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1. MEDICAL ABBREVIATIONS & TERMINOLOGY DICTIONARY

Term/Abbrev.

Definition

Acidity

Having a pH (chemistry symbol for the potential of Hydrogen, which is a measure of the acidity or alkalinity of a solution) that is lower than 7.0

Acupuncture

Practice of inserting needles into the skin at points (Meridians) of the body to help relieve pain and treat illness

Addiction

Psychological, emotional, physical need for a drug, associated with cravings and inappropriate efforts to obtain the drug

AFGI

Abbreviation for "Aspiration &Fibrin Glue Injection" (This abbreviation is not a standardized medical abbreviation, but one that patients have used to abbreviate; it has also been called FGI, but that abbreviation is too abbreviated in that it eliminates the first part of the procedure, the aspiration of the spinal fluid, before fibrin glue is injected.) The procedure is used for treatment of Tarlov cysts by first aspirating the cerebrospinal fluid (CSF) from the Tarlov cyst(s) and then injecting fibrin glue as a sealant to occlude the neck of the cyst and prevent CSF from further refilling the cyst. This procedure is performed by an Interventional Neuroradiologist, and sometimes with the assistance of a Neurosurgeon to guide the Neuroradiologist via CT guided fluoroscopy.

Alkalinity

Having a pH(chemistry symbol for the potential of Hydrogen, which is a measure of the acidity of alkalinity of a solution) that is higher than 7.0

Analgesic

A drug or medicine given to reduce pain without resulting in loss of consciousness. Analgesics are sometimes referred to as painkiller medications. There are many different types of analgesic medications available in both prescription and over the counter types. For further information, you might wish to go to the pain dictionary in the website library.

Anterior

Before or in front of; the opposite of posterior. Anterior approach in spine surgery refers to an approach through the front of the neck or through the abdomen.

Antidepressant

A drug used to prevent or treat depression. Some anti-depressant medications are known to act also as analgesics (pain reliever meds), especially for some forms of neuralgia (nerve pain)

The available antidepressant drugs include the SSRIs or selective serotonin reuptake inhibitors, MAOIs or monoamine oxidase inhibitors, tricyclic antidepressants, tetracyclic antidepressants, and others.

The SSRIs (selective serotonin reuptake inhibitors) include:

· citalopram (Celexa, Cipramil)

· escitalopram oxalate (Cipralex, Lexapro)

· fluvoxamine maleate (Luvox)

· paroxetine (Paxil, Seroxat, Aropax)

· fluoxetine (Prozac)

· sertraline (Zoloft, Lustral)

The MAOIs (monoamine oxidase inhibitors) include:

· phenelzine (Nardil)

· tranylcypromine (Parnate)

The tricyclic antidepressants include:

· amitriptyline (Elavil, Endep)

· clomipramine (Anafranil)

· desipramine (Norpramin, Pertofrane)

· doxepin (Adapin, Sinequan)

· imipramine (Tofranil)

· nortryptyline (Pamelor)

· protriptyline (Vivactil)

· trimipramine (Surmontil)

The tetracyclic antidepressant is maprotiline (Ludiomil).

Other antidepressant drugs include:

· bupropion (Wellbutrin)

· buspirone (Buspar)

· duloxetine (Cymbalta)

· mirtazapine (Remeron, Zispin, Avanza, Norset, Remergil)

· nefazodone (Serzone)

· reboxetine (Edronax, Vestra)

· trazodone (Desyrel)

· venlafaxine (Effexor)

Antiseizure

A classification of medications that helps to prevent seizures; they also have potential benefit in treating nerve pain. Two of the most common medications used for the treatment of nerve pain are gabapentin (Neurontin) and pregabalin (Lyrica)

Antiseizure medications by chemical and brand name:

Carbamazepine, aka Tegretol

Clonazepam, Klonopin

Clorazepate, aka Tranxene

Divalproex, aka Depakote

Gabapentin, aka Neurontin

Levetiracetam, Keppra

Lamotrigine, aka Lamictal

Oxcarbazepine, Trileptal

Pregabalin, aka Lyrica

Tiagabine, aka Gabitril

Topiramate, aka Topamax

Valproate Sodium, aka Depacon

Zonisamide, aka Zonegran

Arachnoid

Middle layer of the 3 membranes (meninges) that cover the brain and spinal cord

Arachnoiditis

Arachnoiditis is a debilitating condition characterized by severe stinging and burning pain and neurologic problems. It is caused by an inflammation of the arachnoid lining - one of the 3 linings that surround the brain and spinal cord. This inflammation causes constant irritation, scarring, and binding of nerve roots and blood vessels. The predominant symptom of arachnoiditis is chronic and persistent pain in the lower back, lower limbs or, in severe cases, throughout the entire body. Other symptoms may include:

Tingling, numbness, or weakness in the legs,bladder dysfunction,severe shooting pain (which some compare to an electric shock sensation). Most people with arachnoiditis are unable to work and have significant disability. This disorder can be very debilitating, as the pain is constant and intractable.

Aspiration

Removal of fluid and cells through a needle.

Asymptomatic

Without symptoms (the prefix "a" means in the absence of or without)

Autoimmune

A misdirected immune response that occurs when the immune system goes awry and attacks the body itself. Autoimmune diseases occur when there is a progression of this process. Some autoimmune diseases are lupus, Ehler's Danlos, scleroderma, Sjogren's, Marfan syndrome.

Biofeedback

Biofeedback is an electronic means of measuring and controlling certain on-going body functions such as muscle tension, skin temperature, and heart rate, which were once thought to be "involuntary" or not under an individual's control. The development of techniques such as biofeedback makes it possible, without drugs, to gain control over these physiological functions, many of which change dramatically under stressful conditions.

Bladder

A membranous sac or receptacle for a secretion, as in the urinary bladder

Blood Patch

An epidural blood patch is a relatively simple procedure in which blood drawn from an intravenous line in the arm is injected into the epidural space in the spine. This procedure is commonly done to treat spinal headaches, usually resulting from a loss of CSF following a lumbar puncture or myelogram. This type of headache is positional in nature, usually worsened by sitting or standing and relieved by lying down. Placement of the blood forms a barrier within the epidural space to seal off the leak.

The injection is done with the patient lying on his or her abdomen. Fluoroscopy (live x-ray) is used to aid the radiologist in guiding the needle directly into the epidural space. Once the needle has reached the epidural space, a small amount of contrast dye is injected into the area to ensure proper needle placement and then the blood is injected.

Following the procedure, the patient is expected to lie flat for approximately an hour, after which time the patient is discharged with instructions to rest at home.

Bone scan

A bone scan is a test that detects areas of increased or decreased bone metabolism. The test is performed to identify abnormal processes involving the bone such as tumor, infection, or fracture. A radiotracer (a bone-seeking radioactive material) is injected into a vein, so it travels through the bloodstream. As the material wears away, it gives off radiation. This radiation is detected by a camera that slowly scans your body. The camera takes pictures of how much radiotracer collects in the bones. If a bone scan is done to see if you have a bone infection, images will be taken shortly after the radioactive material is injected, as well as 3 to 4 hours later, when it has collected in the bones. This is called a 3-phase bone scan.

Catheterize

Passage of a small catheter (tube) into a body cavity for the purpose of drainage as in catheterization or drainage of the urinary bladder, or for insertion of a contrast medium for a diagnostic test

CAT scan or CT

Computerized Axial Tomography (CAT) or CT scanning uses special X-ray technology to obtain image data from different angles around the body and then uses computer processing of the information to show a cross section of body tissues and organs. Radiologists interpreting the images can then view the organs in cross section.

Cauda equina

Cauda equina (horse's tail) is so-called because of its appearance. It is found at the lower end of the spinal cord. The spinal cord is shorter than the spinal (vertebral) canal in which it runs, ending at the approximate level of the first or second lumbar vertebra (this may vary in different people). The cauda equina contains the nerve roots from L1-5 and S1-5. Nerve roots L4-S4 join in the sacral plexus which gives rise to the largest nerve in the body, the sciatic nerve. The sacral plexus is also involved in sensory and motor nerves to and from the anal and genital regions. The nerve roots emerge in pairs from the relevant vertebral foramen (hole)

Cervical

The upper spine (neck) area of the vertebral column. This section consists of seven vertebra, and are referred to as C1-C7. These vertebrae are smaller in size when compared to other spinal vertebrae. The purpose of the cervical spine is to contain and protect the spinal cord, support the skull, and enable diverse head movement ( rotate side to side, bend forward and backward).
 
 

Spinal Cord and Cervical Nerve Roots
Nerve impulses travel to and from the brain through the spinal cord to a specific location by way of the peripheral nervous system (PNS). The PNS is the complex system of nerves that branch off from the spinal nerve roots. These nerves travel outside of the spinal canal or spinal cord into the organs, arms, legs, fingers - throughout the entire body.

Injury or mild trauma to the cervical spine can cause a serious or life-threatening medical emergency Pain, numbness, weakness, and tingling are symptoms that may develop when one or more spinal nerves are injured, irritated, or stretched. The cervical nerves control many bodily functions and sensory activities.

C1: Head and neck
C2: Head and neck
C3: Diaphragm
C4: Upper body muscles (e.g. Deltoids, Biceps)
C5: Wrist extensors
C6: Wrist extensors
C7: Triceps
C8: Hands

Chiari Malformation

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward and protrude through the foramen magnum (the opening at the base of the skull through which the spinal cord passes). The resulting pressure on the cerebellum and the spinal cord can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, hoarseness, numbness, vision problems, headache, and problems with balance and coordination.

Clinical Trials
 

Organized studies that test the value of various treatments, such as drugs or surgery, in human beings. They are only conducted on a limited basis and with the approval of IRB (Internal Review Boards), which are committees that approve, monitor, and regulate the activities of the trials, as well as report the results. All patients involved are informed and sign permits to be involved in the clinical trials.

Coccydynia

Pain in the coccyx (tailbone) or end of the spinal column

Coccyx

Small bone at the base of the spinal column formed by four fused vertebrae; also referred to as the "tailbone"

Congenital

Present at birth

Connective tissue disorders

A disease (autoimmune or otherwise) ,such as Lupus, Ehler's-Danlos, or Marfan's that attacks the collagen or other components of connective tissue (the material between the cells of the body that gives tissues form and strength).

Contralateral

Originating in or affecting the opposite side of the body; for example, a Tarlov cyst may be present on the right side, but the patient's symptoms such as pain and paresthesias are on the left side

Contrast media

A dye or radiopaque substance used during an x-ray study to provide a contrast in density (thickness) between the tissue or organ being filmed and the media.The contrast media improves visualization of specific tissues and organs.
Conus medullaris The conus medullaris is the terminal end of the spinal cord. It occurs near lumbar vertebral levels 1 (L1) and 2 (L2). After the spinal cord tapers out, the spinal nerves continue as dangling nerve roots called cauda equina. This terminal nerve root tail is referred to as the filum terminale. The upper end of the conus medullaris is usually not well defined

Cortisone

A hormone that is sometimes used as an anti-inflammatory agent

Craniosacral therapy

A treatment in alternative medicine that identifies and reduces restrictions in movement of the dural sheath and in the flow of cerebrospinal fluid as a means of restoring well-being.Biodynamic Craniosacral Therapy takes a whole-person approach to healing and the inter-connections of mind, body and spirit are deeply acknowledged. It is an effective form of treatment for a wide range of illnesses helping to create the optimal conditions for health, encouraging vitality and facilitating a sense of well-being. It is suitable for people of all ages including babies, children and the elderly, and can be effective in acute or chronic cases.

CSF

Cerebrospinal Fluid. The clear fluid that surrounds the brain and spinal cord, and acts as a shock absorber to prevent injury to them. CSF is manufactured in the ventricles of the brain. The CSF contains nutrients and proteins necessary for the nourishment and normal function of the brain; it also carries away waste products from surrounding tissues. The CSF flows between the cranium (skull) and spine to compensate for changes in intracranial blood volume. The balance between the production and absorption of CSF is critically important. The abnormal accumulation of fluid is due to a disturbance in the production or absorption of CSF, or to a blocked flow of CSF.

Cyst

Abnormal closed sac-like structure within a tissue that contains a liquid, gas, or semi-solid substance. Cysts can occur anywhere in the body and can vary in size. The outer portion of a cyst is termed the cyst wall.

Cystitis

An infection of the bladder. It causes burning sensations during urination and a frequent need to urinate. It is caused by bacteria settling in the bladder due to several reasons, including the inability to completely empty the bladder when urinating. This is called urinary retention.

DDD

Degenerative disc disease is a misnomer. A large part of many patients' confusion is that the term "degenerative disc disease" sounds like a progressive, very threatening condition. However, this condition is not strictly degenerative and is not really a disease. Part of the confusion probably comes from the term "degenerative", which implies to most people that the symptoms will get worse with age. The term applies to the disc degenerating, but does not apply to the symptoms. While it is true that the disc degeneration is likely to progress over time, the low back pain from degenerative disc disease usually does not get worse. Another source of confusion is probably created by the term "disease", which is a misnomer. Degenerative disc disease is not really a disease at all, but rather a degenerative condition that at times can produce pain from a damaged disc.

Disc degeneration is a natural part of aging and over time all people will exhibit changes in their discs consistent with a greater or lesser degree of degeneration. However, not all people will develop symptoms. In fact, degenerative disc disease is quite variable in its nature and severity.

Dependency

The situation where a patient may come to feel the absolute need for a drug (psychological dependency) or will experience withdrawal symptoms if the drug is taken away (physical dependency).

Dermatome

An area of skin supplied by fibers of a single nerve root
 
DEXA scan Dexa stands for ‘Dual Energy X-ray Absorptiometry’. It is most often referred to as a Bone Density test. It is the most commonly used test for measuring bone mineral density. It is one of the most accurate ways to diagnosis Osteopenia or Osteoporosis.

Dilation or dilatation

The process of enlargement, stretching, or expansion.
 

Disc/Disk

A flat round platelike structure. Discs separate the bones that make up the spinal column. They are fibrous structures filled with a pulpy, gelatinous matter(nucleus pulposus). They function as shock absorbers for the spine. Disc-related injuries to the back can be associated with deformation of the discs, including bulging and rupturing of the discs.

Discography

A diagnostic tool to determine if a disc is causing pain. Discography is usually performed in a procedure room that has equipment for X-ray imaging of the discs as the test is performed. You will be asked to lay on one side and may be rolled slightly forward on a table. Pillows can be used to help you achieve the desired position. Your skin will be wiped at the site of the injection with a cleansing antiseptic agent. Typically, the lowest two or three lumbar disc levels are injected. The health care provider may inject an anesthetic into the skin to reduce the pain of the needles passing through tissue. In some cases, antibiotics are given intravenously before and after the procedure. A needle is inserted through the skin and muscle and comes to rest on the outer layer of the disc. During the process of placing the needles, imaging studies called fluoroscopy (similar to X-ray) are used to help the health care provider see where the needles are located along the path to the disc. A second needle is passed through the first one and into the center of the disc. This process is repeated at each level that is to be injected. In some cases, the health care provider may decide to inject an additional level and will place needles at that location after the initial injections. Contrast (a liquid that shows up on X-ray), is injected into the center of each disc. If the disc is normal, the contrast remains in the center of the disc. If the disc is abnormal, the contrast spreads through the tears in the disc. As each disc is injected, you may be asked to rate the intensity of the pain that the injection causes, if any. You may also be asked if the pain is similar to your usual symptoms in terms of location and the type of pain you are experiencing. This procedure is repeated for each disc that is injected. The pain provoked by the injection should be temporary. CT scanning is often performed after disc injection. This gives your health care provider more information about the exact pattern of the spread of the contrast through or out of the disc. Widespread disc degeneration is identified by the contrast spreading throughout the disc space.

Dura mater

Literally means "hard mother" in Latin. It is the outermost, toughest, and most fibrous of the three membranes (meninges) covering the brain and spinal cord, and is usually simply referred to as dura.

Dural Ectasia (Ecstasia)

A widening of the spinal canal

Dural sheath

An extension of the dura mater that envelops the roots of spinal nerves

EMG

Electromyogram is a medical test that measures muscle response to electric nerve stimulation to the muscles; EMG is performed using an instrument called an electromyography, to produce a graphic record of the nerve stimulation to muscles. "Myo" is a medical term meaning muscle.

Epidural

Outside the dura, which is the outermost, toughest, and most fibrous of the three membranes (meninges) covering the brain and the spinal cord.

ESI

Epidural Steroid Injection

An epidural steroid injection places a powerful anti-inflammatory medication directly around the spinal nerves. To administer the epidural steroid injection, your doctor will have you lie flat, face down, on an x-ray table. Using the x-ray to visualize the location of the tip of the needle, your doctor will guide the needle to an area very near to the spinal nerves, called the epidural space. Using the x-ray improves the chance the medication will be given in the proper location. The epidural steroid injection lasts about 15 minutes, and light sedation may be used if needed.

Epidural steroid injections may be given by many types of physicians, including anesthesiologists, orthopedic surgeons, neurologists, interventional radiologists, and others trained in this technique. Usually a series of injections, often three, each spaced a week apart, are given. With this schedule, many patients find relief of symptoms within a few weeks. Often this helps control the inflammatory process and may provide long-lasting relief.

Side-effects from epidural steroid injections are rare, but should be discussed. These include:

Infection: Very unusual (less that 0.5%), and usually avoided by using a sterile technique.

Bleeding: Also unusual, and avoided by not performing this procedure on patients with bleeding disorders or those on blood thinning medication.

Dural Tears: Caused by piercing the sac around the spinal nerves with the needle. This usually results in a headache.

Increased Blood Sugar: Diabetics must carefully monitor their blood sugar after this or any other steroid injection.

Other side-effects are possible, and should be discussed prior to injection with the doctor performing this procedure.

Etiology

Cause

Facet

A small smooth area on a bone

Fenestration

A surgical term meaning to make an artificial opening, as in the fenestration/imbrication procedure, to create slices into a Tarlov cyst to drain the spinal fluid before packing with fat and glue (imbrication)

FGI or AFGI

A more accurate acronym is AFGI, to denote aspiration and then fibrin glue injection. Neither acronym is recognized in the standardized, universally recognized medical abbreviations. In this case it is shortened for "Aspiration &Fibrin Glue Injection". The procedure is used for treatment of Tarlov cysts by first aspirating the CSF(cerebrospinal fluid) from the Tarlov cyst(s) and then injecting fibrin glue as a sealant to occlude the neck of the cyst and prevent CSF from further refilling the cyst. This procedure is performed by an Interventional Neuroradiologist, and sometimes with the assistance of a Neurosurgeon to guide the Neuroradiologist via CT guided fluoroscopy.

Fibrin glue

Fibrin sealants are a type of surgical tissue adhesive derived from human and animal blood products. The ingredients in these sealants interact during application to form a stable clot composed of a blood protein called fibrin. Fibrin sealants are also called fibrin glues.

Filum

This is a thin piece of tissue that comes from the end of the spinal cord and goes to the coccyx (tail bone). It is also referred to as "filum terminale". Sometimes there is too much fat in the filum, or the filum is too tight; both of these things can cause a tethered cord.

Foramen

Hole or opening

Foramen magnum

Opening of the occipital bone (at the base of the skull) through which the spinal cord passes from the brain

Fluoroscopy

A type of medical imaging that shows a continuous x-ray image on a monitor, much like an x-ray movie. It is used to diagnose or treat patients by displaying the movement of a body part or of an instrument or dye (contrast agent) through the body.

Herpes Simplex Virus

Herpes simplex virus type 1 (HSV-1) is usually associated with infections of the lips, mouth, and face. It is the most common herpes simplex virus and is usually acquired in childhood. HSV-1 often causes lesions inside the mouth such as cold sores (fever blisters) and is transmitted by contact with infected saliva. By adulthood, up to 90% of individuals will have antibodies to HSV-1. Herpes simplex virus 2 (HSV-2) is sexually transmitted. Symptoms include genital ulcers or sores. In addition to oral and genital lesions, the virus can also lead to complications such as meningoencephalitis (infection of the lining of the brain and the brain itself) or cause infection of the eye -- in particular the conjunctiva, and cornea. However, some people have HSV-2 but do not display symptoms. Up to 30% of U.S. adults have antibodies against HSV-2.

HNP

Herniated Nucleus Pulposus: medical terminology for herniated vertebral disc. The soft, fibro cartilaginous, gel-like central portion of the intervertebral disc that serves as a "shock absorber cushion" in the disc. The discs may herniate, rupture, or move out of place due to injury or strain on the discs.

IBS

Irritable Bowel Syndrome is also known as spastic colon. The signs and symptoms of irritable bowel syndrome can vary widely from person to person and often resemble those of other diseases. Among the most common are: abdominal pain or cramping, a bloated feeling, gas (flatulence), diarrhea or constipation; people with IBS may also experience alternating bouts of constipation, diarrhea, and mucus in the stool. No one knows exactly what causes irritable bowel syndrome. The walls of the intestines are lined with layers of muscle that contract and relax as they move food from your stomach through your intestinal tract to your rectum. Normally, these muscles contract and relax in a coordinated rhythm. But if you have irritable bowel syndrome, the contractions are stronger and last longer than normal. Food is forced through your intestines more quickly; however, sometimes the opposite occurs, the contractions as less strong, food passage slows, and stools become hard and dry .Some researchers believe IBS is caused by changes in the nerves that control sensation or muscle contractions in the bowel. In the case of damaged or irritated sacral nerve roots at S2, S3, this could be a problem in patients with Tarlov cysts.

IC

Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms vary from case to case and even in the same individual. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate (urgency), a frequent need to urinate (frequency), or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties. Women's symptoms often get worse during menstruation.

Imbrication

A surgical term meaning to make overlaps or layers. This procedure is used in the surgical treatment of Tarlov cysts in the process of overlapping layers of fat and glue, after the cysts have been fenestrated(sliced) and drained of spinal fluid.

Incontinence

Inability to retain urine or feces through loss of sphincter control, or because of spinal lesions or spinal nerve damage

Inflammation

A basic way by which the body reacts to infection, irritation, or other injury causing the possible symptoms of pain and swelling

Interventional Neuroradiologist

An accredited medical subspecialty centered on minimally invasive image-based technologies/procedures used to diagnosis and treat diseases of the head, neck, and spine. Abbreviated as INR

Intractable

Difficult to alleviate, remedy, or cure, as in intractable pain

Kegel

Kegel exercises are designed to strengthen the pelvic floor muscles that surround the openings of the urethra, vagina and rectum.

Laminectomy

A surgical procedure to remove a portion of a vertebra, called the lamina, under which one finds the ruptured disk that is pushing on nerves and causing pain and dysfunction. The ruptured disk is then removed. In other instances the lamina is removed because of pressure caused by bony spurs or other pathology.

Lordosis

An abnormal forward or inward curvature of the spine in the lumbar region

LP

Lumbar Puncture. Also referred to as a "spinal tap". This procedure is done for diagnostic purposes to obtain spinal fluid for lab analysis. It is also a procedure done prior to a myelogram, as a mechanism for injecting contrast material (dye) into the spinal fluid, so that anatomical abnormalities can be more clearly seen.

Lumbar

Pertains to the abdominal segment of the torso, between the diaphragm and the sacrum (pelvis) The five vertebrae in the lumbar region of the back are the largest and strongest in the spinal column.

Marfan Syndrome

Marfan syndrome is an inherited disorder of the connective tissue that causes abnormalities of the patient's eyes, cardiovascular system, and musculoskeletal system. Marfan syndrome is sometimes called arachnodactyly, which means "spider-like fingers", since one of the characteristic signs of the disease is disproportionately long fingers and toes. It is estimated that one person in every 3000-5000 has Marfan syndrome, or about 50,000 people in the United States. Marfan syndrome is one of the more common inheritable disorders.

Marfan syndrome affects three major organ systems of the body: the heart and circulatory system, the bones and muscles, and the eyes. The genetic mutation responsible for Marfan syndrome was discovered in 1991. It affects the body's production of fibrillin, which is a protein that is an important part of connective tissue. Fibrillin is the primary component that allow tissues to stretch repeatedly without weakening. Because the patient's fibrillin is abnormal, his or her connective tissues are looser than usual, which weakens or damages the support structures of the entire body.

The most common external signs associated with Marfan syndrome include excessively long arms and legs, with the patient's arm span being greater than his or her height. The fingers and toes may be long and slender, with loose joints that can be bent beyond their normal limits. This unusual flexibility is called hypermobility. The patient's face may also be long and narrow, and he or she may have a noticeable curvature of the spine. It is important to note, however, that Marfan patients vary widely in the external signs of their disorder and in their severity; even two patients from the same family may look quite different. Most of the external features of Marfan syndrome become more pronounced as the patient gets older, so that diagnosis of the disorder is often easier in adults than in children. In many cases, the patient may have few or very minor outward signs of the disorder and the diagnosis may be missed until the patient develops vision problems or cardiac symptoms.

Massage

Systematic, scientific manipulations of body tissues with the hands to relieve pain and reduce swelling, relax muscles, and speed healing after strains and sprains. It has been used for more than 3,000 years by the Chinese. Early in the 19th century, the Swedish physician Per Henrik Ling (1776 – 1839) devised a massage system for joint and muscle ailments, which were later, extended to relieve deformities of arthritis and re-educate muscles following paralysis. Manipulations include light or hard stroking, compression (kneading, squeezing, and friction), and percussion (striking with the edges of the hands in rapid alternation).

Massage for the patient with Tarlov cysts should be a gentle massage and particularly around the sacral area.

Meninges

The three layered membranes (pia mater, arachnoid mater, and dura mater) that surround the brain and spinal cord

Diagram of Vertebra, Meninges and Spinal cord

Meningocele

A protrusion of the meninges through an opening in the vertebral column. A meningocele contains only cerebrospinal fluid and no neural tissue.

MRI

Magnetic Resonance Imaging. MRI is a diagnostic imaging tool that produces detailed images of the human body without ionizing radiation or X-rays. These images are created using a large magnet, radio waves and computers.

MRN

Magnetic Resonance Neurography is the imaging of nerves through the use of magnetic resonance equipment. But MR neurography is more than just placing a person underneath an MR machine and taking a picture; it is a patented process that requires specific MR equipment and patented configurations, skilled personnel to perform the imaging, computer-aided visual enhancements, and trained neuroradiologists and neurosurgeons to "read" (or knowledgeably interpret) the scans to properly identify issues and provide diagnoses and recommended courses of action.

Myelogram

A myelogram is a special x-ray examination to study the spinal canal, spinal cord and the area surrounding it, which is called the subarachnoid space. The procedure involves the injection of contrast material or dye into the spinal canal. A myelogram can identify abnormalities of the spinal cord, the spinal canal within which it sits, and the spinal nerve roots connected to it. Myelography is often performed when other exams such as computerized tomography (CT) scans or magnetic resonance imaging (MRI) have not provided enough information for an accurate diagnosis to be made.

Narcotic

An addictive drug, such as opium, that reduces pain, alters mood and behavior, and usually induces sleep or stupor. Natural and synthetic narcotics are used in medicine to control pain.

NCV

Nerve conduction velocity (NCV) is a test that determines the speed of conduction of impulses through a nerve. The nerve is stimulated, usually with surface electrodes, which are patch-like electrodes placed on the skin over the nerve at various locations. One electrode stimulates the nerve with a very mild electrical impulse. The resulting electrical activity is recorded by the other electrodes. The distance between electrodes and the time it takes for electrical impulses to travel between electrodes are used to calculate the nerve conduction velocity.

Nerve Blocks

The injection of a nerve numbing substance around a group of nerves (plexus or ganglion) that cause pain to a specific organ or body region. There are different types of nerve blocks used for different purposes: "Therapeutic" nerve blocks are used to treat painful conditions. They contain local anesthetic that can be used to control acute pain. "Diagnostic" nerve blocks are used to determine sources of pain; these blocks typically contain an anesthetic with a known duration of relief. "Prognostic" nerve blocks predict the outcomes of given treatments. For example, a nerve block may be performed to determine if more permanent treatments (such as surgery) to block the activity of a nerve would be successful in treating pain. The medications that are injected include local anesthetics, steroids, and opioids.

Nerve root

The start of the nerve as it leaves the spinal cord and passes through the left and right foramen to serve an area of the body. Diagram shows the Sacral nerves at S2, S3, and S4 that effect the intestines, bladder, and reproductive organs.

Neuralgia

Nerve Pain

Neuritis

Inflammation of a nerve

Neurogenic

Originating from nerve tissue

Neuropathy

The name given to a group of disorders involving nerves. Symptoms range from a tingling sensation or numbness in the toes and fingers to paralysis.

Neuropathic pain

Pain initiated or caused by a primary lesion or dysfunction in the nervous system. It is characterized by spontaneous pain described as burning, cramping, constant

NR

Neuroradiologist - A physician who specializes in the branch of radiology that deals with the nervous system

NS

Neurosurgeon. A physician who has specialized in surgical procedures involving brain, spinal cord and nervous system.

NSAID

Non Steroidal Anti-Inflammatory Drug - There are 2 types of prescription and OTC (over the counter) NSAIDs

Traditional NSAIDs include the following:

Diclofenac (brand names: Cataflam, Voltaren)

Etodolac (brand name: Lodine)

Fenoprofen (brand name: Nalfon)

Flurbiprofen (brand name: Ansaid)

Ibuprofen ( brand names: Advil, Motrin)

Indomethacin (brand name: Indocin)

Ketoprofen (brand names: Orudis, Oruvail)

Meclofenamate

Meloxicam (brand name: Mobic)

Nabumetone (brand name: Relafen)

Naproxen (brand names: Anaprox, Naprelan, Naprosyn)

Oxaprozin (brand name: Daypro)

Piroxicam (brand name: Feldene)

Sulindac (brand name: Clinoril)

Tolmetin (brand name: Tolectin)

COX-2 inhibitors include celecoxib (brand name: Celebrex)

NTD

Neural tube defect; defects in the spinal cord ranging from conditions such as spina bifida, tethered cord, myelomeningocele

Opiate

Any drug containing or derived from opium

Osteoporosis

A decrease in bone mass and bone density and an increased risk and/or incidence of fracture

Pain

A sensation in which a person experiences discomfort, distress, or suffering due to provocation of sensory nerves. Chronic pain is defined as pain that lasts longer than 3 months.

Pain management
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Pain management  is the discipline concerned with the relief of pain.

Acute pain, such as that which occurs with trauma, often has a reversible cause and may require only transient measures and correction of the underlying problem. In contrast, chronic pain results from conditions that are difficult to diagnose and treat, and that may take a long time to reverse. Some examples include cancer, neuropathy and referred pain. Pathways are set up to continue to transmit the sensation of pain even though the underlying condition or injury that originally caused pain has been healed. In such situations, the pain itself is frequently managed separately from the underlying condition of which it is a symptom, or goal of treatment is to manage the pain with no treatment of any underlying condition , if the underlying condition has resolved or if no identifiable source of the pain can be found.

Pain management generally benefits from a multidisciplinary approach that includes pharmacologic measures (analgesics such as narcotics or NSAIDs and modifiers,such as tricyclic antidepressants or anticonvulsants), non-pharmacologic measures (such as interventional procedures, physical therapy and physical exercise, application of ice and/or heat), and psychological measures (such as biofeedback and cognitive therapy).

Pain management practitioners come from all fields of medicine. Most often, pain fellowship trained physicians are anesthesiologists, neurologists, physiatrists or psychiatrists. Some practitioners focus more on the pharmacologic management of the patient, while others are very proficient at the interventional management of pain. Interventional procedures typically used for chronic back pain  include: epidural steroid injections, facet joint injections, neurolytic blocks, Spinal Cord Stimulators (SCS) and intrathecal drug delivery system implants, etc. Over the last several years the number of interventional procedures done for pain has grown to a very large number 
   
Papilledema

Swelling of the optic disc, visible on ophthalmoscopic examination of the fundus of the eye, caused by increase in intracranial pressure. The meningeal sheaths that surround the optic nerves from the optic disc are continuous with the meninges of the brain; therefore increased intracranial pressure is transmitted forward from the brain to the optic disc in the eye to cause swelling.

Paresthesia

An abnormal sensation, such as numbness, tingling, prickling, burning, or creeping on the skin that has no objective cause. Paresthesia is the usual American spelling and paraesthesia the preferred English spelling. Pronounced par·es·the·sia. From the Greek para (abnormal) + esthesis (feeling) = an abnormal feeling.

Pathology

The scientific study of the nature of disease and its causes, processes, development, and consequences

Perineural

Around a nerve or group of nerves

Peritoneal

Having to do with the peritoneum (the tissue that lines the abdominal wall and covers most of the organs in the abdomen)

pH

A chemistry symbol for the potential of Hydrogen, which is a measure of the acidity or alkalinity of a solution. Solutions with a pH less than seven are considered acidic, while those with a pH greater than seven are considered basic (alkaline).

PHN

Post Herpetic Neuralgia – Medical term for an eruption of the herpes zoster virus that has been lying dormant in the nervous system. It is more commonly referred to as "shingles". The lesions of shingles usually appear around the lower trunk/waistline and can be very painful.

Pia mater

The delicate and highly vascular innermost layer of the three meninges (membranes covering the brain and spinal cord) It is a translation from latin meaning "tender mother".

Piriformis (muscle and syndrome)

The piriformis muscle is flat, pyramid-shaped, and oblique (slanted). This muscle originates to the anterior of the S2-S4 vertebrae, the sacrotuberous ligament, and the upper margin of the greater sciatic foramen. This muscle passes through the greater sciatic notch and inserts on the superior surface of the greater trochanter(bony bump) of the femur(large bone in the upper leg). With the hip extended, the piriformis muscle is the primary external rotator; however, with the hip flexed, the piriformis muscle itself becomes a hip abductor (Muscle which when activated, normally moves an extremity or limb away from the body). Piriformis syndrome is pain in the hip, buttocks, or thigh. It is caused by pressure on the piriformis muscle in the hip. The pain is a deep ache and gets worse with exercise or sitting for long periods. In 10% of the population the sciatic nerve passes through the piriformis instead of under it as normal. Conditions which cause the muscle to become short and contracted increase the nerve compression. Not all cases are due to the nerve passing through the muscle.

Posterior

Toward the rear or back; opposite to anterior

Prognosis

The probable outcome of a disease

Radiculopathy

The irritation of a nerve root; radiculopathies can cause pain and/or neurologic deficits

Resection

A partial excision or cutting off of a part surgically

Residual

That which is left, as in "residual urine" This can occur with inability to empty the bladder due to nerve damage; it increases the incidence of cystitis (bladder infection).

Retention

Holding back…as in the inability to urinate or empty the bladder, requiring catheterization; one cause is involvement of damaged or irritated nerve pathways to the bladder.

Sacral Nerve Root

Refers to the 5 pair of nerve roots which branch off of the sacrum. The spinal cord can be divided into segments according to the nerve roots that branch off of it. Nerves along the spinal cord consists of 8 cervical, 12 thoracic, 5 lumbar, 5 sacral, and 1 coccygeal. The nerve roots run through the bony canal, and at each level a pair of nerve roots exit from the spine on the left and right side. These nerve roots are the most prevalent areas for the Tarlov cysts to form. The spinal canal extends into the sacrum and the sacral nerves exit the canal through bony foramina, ending in a bundle resembling a horse's tail and called "Cauda equina".

Sacrum

The sacral spine or sacrum refers to the large irregular and inverted triangular shaped bone made up of the five fused vertebrae below the lumbar region.

Sciatica

Low back pain and leg pain that usually travels along the path of the large sciatic nerve, from the lower back down the back of the leg. This pain can be felt when a nerve root in the lower spine that helps to form the sciatic nerve is pinched or irritated. One or more of the following sensations may occur as a result of sciatica:

· Pain in the buttock or leg that is worse when sitting

· Burning or tingling down the leg

· Weakness, numbness or difficulty moving the leg or foot

· A constant pain on one side of the buttock

· A shooting pain that makes it difficult to stand up

Scoliosis

A curving of the spine in which the spine curves to the side and away from the midline.

SCS

Spinal Cord Stimulator- In this therapy, electrical impulses are used to block pain from being perceived in the brain. Instead of pain, the patient feels a mild tingling sensation. A small wire (called a lead) connected to a power source is surgically implanted under the skin. Low-level electrical signals are then transmitted through the lead to the spinal cord or to specific nerves to block pain signals from reaching the brain. Using a magnetic remote control, you can turn the current on and off, or adjust the intensity. The sensations derived from the stimulator are different for everyone; however, most patients describe it as a pleasant tingling feeling.

Shingles

An acute infection caused by the herpes zoster virus, which is the same virus that causes chickenpox. The virus remains dormant in nerve roots for many years following chickenpox, and can reactivate causing tremendous pain along the nerve roots, primarily those around the waistline and lower trunk of the body. Shingles are also referred to as post herpetic neuralgia (PHN).

Shunt

A cerebrospinal fluid shunt is a system of valved tubes/catheters. It diverts cerebrospinal fluid from the subarachnoid space into another part of the body to drain it and prevent damage to the brain. In the case of Tarlov cysts, the shunt is to divert CSF away from the cyst and to prevent CSF pressure from increasing. The upper end of the shunt is placed in the subarachnoid space in the lumbar part of the spinal column; the lower end drains fluid into the peritoneum (the membrane that lines the walls of the abdominal cavity). This shunt is called a lumboperitoneal shunt.

Spina Bifida

A congenital defect with failure of closure of one or more of the vertebral arches, which may be associated with malformations of the spinal cord, nerve roots, lipomas, and congenital cysts. These malformations range from mild to severe, including complete failure of neural tube and spinal cord fusion, resulting in exposure of the spinal cord at the surface of the skin. The open form is called "Spina Bifida Cystica" and the closed form is "Spinal Bifida Occulta".

Spina Bifida Occulta

The closed form of malformation of the spinal cord; a congenital defect of the neural tube due to failure of the vertebral arch to close

Spinal cord

A large bundle of nerve fibers located in the back that extends from the base of the brain to the lower back, the spinal cord carries messages to and from the brain and the rest of the body.

Spinal nerves

Any of the nerves that arise in pairs from the spinal cord. There are 31 pairs of spinal nerves in the human body.

Subarachnoid

The space between the arachnoid and the pia mater (2 of the 3 meninges) covering the spinal cord

Symptomatic

With symptoms or concerning symptoms that cause changes in body function or process

Symptomatology

The combined symptoms of a disease

Syringomyelia

Syringomyelia (sear-IN-go-my-EEL-ya) is a disorder by which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord. Since the spinal cord connects the brain to nerves in the extremities, this damage results in pain, weakness, and stiffness in the back, shoulders, arms, or legs. Other symptoms may include headaches and a loss of the ability to feel extremes of hot or cold, especially in the hands. Each patient experiences a different combination of symptoms. Magnetic resonance imaging (MRI) has significantly increased the number of syringomyelia cases that are diagnosed in the beginning stages of the disorder. Signs of the disorder tend to develop slowly, although sudden onset may occur with coughing or straining. If not treated surgically, syringomyelia often leads to progressive weakness in the arms and legs, loss of hand sensation, and chronic, severe pain. In most cases, the disorder is related to a congenital abnormality of the brain called a Chiari I malformation. This malformation occurs during the development of the fetus and causes the lower part of the cerebellum to protrude from its normal location in the back of the head into the cervical or neck portion of the spinal canal. Syringomyelia may occur as a complication of trauma, meningitis, hemorrhage, a tumor, or arachnoiditis. Symptoms may appear months or even years after the initial injury, starting with pain, weakness, and sensory impairment originating at the site of trauma. Some cases of syringomyelia are familial, although this is rare.

Tarlov cyst

Tarlov cysts are also known as perineural/perineurial, or sacral nerve root cysts. They are dilations of the nerve root sheaths and are abnormal sacs filled with cerebrospinal fluid that can cause a progressively painful radiculopathy (nerve pain). They are located most prevalently at the S2, S3 level of the sacrum and less commonly at S1. The sacrum is a fused triangle-shaped bone comprised of the 5 sacral vertebrae forming the base of the spine. The 5 lumbar vertebrae are located just above the sacrum, and the 4 coccygeal vertebrae are just below the sacrum forming the coccyx or tailbone.

The TCs appear on MRI to be dilated or ballooned areas of the sheaths that cover nerve roots exiting from the sacral region of the spinal column. The cysts are created by the dilated sheaths of the nerve roots directly connected to the subarachnoid area of the spinal column, through which the cerebrospinal fluid flows. Many people have TCs visible on a MRI, but have experienced no relevant symptoms. The cysts are perhaps identified, but are not acknowledged as significant by the radiologist reading the films or by the physician who ordered them. If the patient has no symptoms that might be suggestive of symptomatic TCs, and sometimes even if they do have symptoms, the patient might not be told about the finding on the MRI. It is not unusual if the cyst has been present for a number of years to see evidence of erosion and remodeling of the sacral bone. When conditions cause these cysts to fill with spinal fluid and to expand in size, they begin to compress important surrounding nerve fibers, or the cysts may contain nerve fibers, resulting in a variety of symptoms including chronic pain.

Below: 4 Intraoperative Tarlov cyst surgery slides

A: Intraoperative view of a large Tarlov cyst. B: Intraoperative view of the muscle flap, divided in the middle, used for the obliteration of the cystic space. C: Intraoperative view after cyst wall resection showing sacral spinalis muscle flap rotated into position in the presacral space to obliterate the cyst cavity. D: Photograph obtained immediately after closure, demonstrating a U-shaped incision over the lumbosacral area, with a lumbar subarachnoid drain placed for postoperative CSF diversion. To view the entire article click on this link

http://www.medscape.com/viewarticle/461107_1

TC

Tarlov cyst. This abbreviation is used by patients with Tarlov cysts, and is not a standardized medical abbreviation.

TENS

Transcutaneous Electrical Nerve Stimulation- These devices deliver electrical impulses to the brain through the skin and nerves to control pain

Tethered cord

Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. The course of the disorder is progressive. Tethering may develop after spinal cord injury and scar tissue can block the flow of fluids around the spinal cord. Increased spinal fluid pressure may cause cysts to form in the spinal cord, a condition called syringomyelia. This can lead to additional loss of movement, feeling or the onset of pain or autonomic symptoms. In adults, surgery to free (detether) the spinal cord can reduce the size and further development of cysts in the cord and may restore some function or alleviate other symptoms.

Thecal sac

A protective membrane that covers the spinal cord and cauda equina; it is a sac containing the spinal cord and spinal fluid.

Thoracic

Pertaining to the chest area of the body. The thoracic region of the vertebral column consists of 12 vertebrae referred to as T1-T12. It is the longest section of the vertebral column and is between the cervical area above it and the lumbar area below it.

Trigger point

An area in muscle or connective tissue that is hypersensitive to touch or pressure

Urodynamics

Urodynamics refers to a group of procedures that are performed to examine voiding (urinating) disorders. Any procedure designed to provide information about a bladder problem can be called a urodynamic test. Most urodynamic testing focuses on the bladder's ability to empty steadily and completely. It also can show whether or not the bladder is having abnormal contractions, which cause leakage. Your doctor will want to know whether you have difficulty starting a urine stream, how hard you have to strain to maintain it, whether the stream is interrupted, and whether any urine is left in your bladder when you are done. The urodynamic test is a precise measurement using sophisticated instruments.

UTI

Urinary Tract Infection- It is a bacterial infection that affects any part of the urinary tract. Although urine contains a variety of fluids. salts, and waste products, it normally does not have bacteria in it. When bacteria get into the bladder and multiply in the urine, it causes a UTI. The most common type of UTI is a bladder infection, which is also often called cystitis. Cystitis means an inflammation of the bladder. UTIs are caused by bacteria, usually by the bacteria that are found in the intestines and sometimes on the skin around the rectal and vaginal areas. There are a number of symptoms associated with UTIs. Bladder infections are characterized by an urgent desire to empty the bladder. Symptoms include frequent urination, burning or pain during urination (dysuria), bladder spasms and the feeling of having to urinate even though little or no urine actually comes out. In some cases, you may have cloudy, bloody or foul-smelling urine, and maybe a mild fever. You should see your physician as soon as possible when you have these symptoms and the infection can be confirmed by urinalysis. Antibiotics will be given to kill the bacteria causing the infection. You should also increase your intake of water during the urinary infection. Patients with Tarlov cysts who have trouble emptying their bladder are more prone to frequent urinary tract infections.

Ventricles

Small cavities of the brain where spinal fluid is produced

Vertebrae

Vertebrae (singular: vertebra) are the individual irregular bones that make up the vertebral column (aka spine) — a flexuous and flexible column. There are normally thirty three (33) vertebrae in humans, including the 5 that are fused to form the sacrum (the others are separated by intervertebral discs) and the 4 coccygeal bones which form the tailbone. The upper three regions comprise the remaining 24, and are grouped under the names cervical (7 vertebrae), thoracic (12 vertebrae) and lumbar (5 vertebrae), according to the regions they occupy.

*******

2.  LETTER TO FAMILY &
FRIENDS
 (originally written in 2000; edited in 2007, 2011, 2013)

Dear Family and Friends,

This letter was written in hopes of improved understanding of
those who live with symptomatic Tarlov cysts and the chronic pain, nerve
damage, and life altering changes they cause.

Having cysts on my spinal nerve roots and the resulting nerve
damage causes chronic pain and means many things in my life change, and a lot
of them are invisible. Most people do not understand about relentless, intractable
pain and its effects, and of those that think they know, many are actually
misinformed. In the spirit of informing those who wish to understand, these are
the things that I would like you to understand about me and my medical
diagnosis, Tarlov cysts.
 
Please understand that living with this medical condition doesn't mean that I am not still trying to live a "normal" life. However, I spend most of my days and nights in
considerable pain and exhaustion; sometimes I probably don't seem like much fun
to be with, but I'm still me…….. just sometimes stuck inside this changed body.
There are things that I can no longer do, and I have had to accept that. I
focus on what I CAN do, not what I can't!


I worry about how the changes in me are affecting you. I care very much about my family and my friends, and I'd still like to hear you talk about your life, your family, and your activities. I like to talk about things other than me and my medical
condition and pain. I still have the same interests I have always had; there
are just some of them I can no longer actively pursue. I am grateful, by the
way, for the things I can still do, my faith in God, and the blessing of your
support, love and friendship.

Please understand the difference between "happy" and
"healthy". When you have the flu, you probably feel miserable with
it, but in a week or two you are back to normal. I've been living with this
diagnosis and its symptoms for years; I can't be miserable all the time. In
fact, I work hard at not being miserable. So, if you're talking to me and I
sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in
pain, or not extremely fatigued, or that I'm "getting better". Please
don't say, "Oh, you're sounding good!" or "But, you look so
good", as if nothing could possibly be wrong. When I am around you and
others, I try to smile, laugh, and enjoy being with you. I am merely coping. I
am happy to be with my friends and family and trying to look normal and act
normal; it does not mean that I am not in pain or that I have had a miraculous
recovery.

Please understand that being able to sit, stand , walk, or be
sociable for 15 minutes doesn't necessarily mean that I can sit, stand , walk,
or be sociable for thirty minutes, or an hour. Just because I managed to sit,
stand , walk for thirty minutes at a time yesterday doesn't mean that I can do
the same today. With this medical condition, it gets more confusing every day.
It can be like a yo-yo. I never know from day to day, how I am going to feel
when I wake up, and how painful the day will become; in most cases, I never
know from hour to hour. That is one of the hardest and most frustrating
components of living with Tarlov cysts and chronic pain. It sure makes planning
ahead difficult, and it means I have had to adapt to an altered life style.

Please understand that chronic pain is variable. It's quite
possible that one day I am able to take a walk, go out to lunch with you, go shopping,
or to church, although when I get home or the next day I'll have trouble walking
to the next room. Please don't be confused by saying or thinking, "But,
you did it before!" or "Oh, come on, I know you can do this!" If
you want me to do something, then ask if I can. I may need to cancel a previous
commitment at the last minute. If this happens, please do not take it
personally. If you are able, please try to remember how very lucky you are to
be physically able to do the things that you can do. I have to re-prioritize my
plans and activities constantly, because of the pain and other symptoms that
persist. I am still learning each day to cope with what I can no longer do, and
to remain very thankful for what I can do.

Please understand that "getting out and doing things" does not always or necessarily make me feel better, and can often make my symptoms worse. I cherish the times I can be more sociable and active. I really try to be as active and involved in activities as I possibly can, as far as the pain and symptoms allow. If I was capable of doing something that would take it away all of the time, don't you know that I would? You know me and know how my life was before these Tarlov cysts and resulting symptoms began and have continued. Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more symptoms and an increase in physical pain. The recovery time from doing something I should not do, or longer than I should do it, is significant. I call it ODI (overdoing it) and I
pay for it dearly .You can't always read the pain on my face or in my body
language. The pain is not caused by depression. The sadness and sometimes
irritability that you might hear in my voice (even though I try hard to hide
it) is from the pain and adjustments I have had to make in my life to go on,
and it is due to the changes such as the loss of my job/career, my inability to
jump in the car whenever I want to run errands, see a movie, go to a
restaurant, visit friends, shop, clean my house, work in my garden, etc. as I
did previously.

Please understand that if I say I have to sit down or lie down
now, that probably means that I have to do it right now; it can't be put off or
forgotten just because I'm somewhere else, or am in the middle of doing
something. I have had to lie down in the floor in my doctor's office when I had
to wait too long, and could no longer sit or stand. Chronic pain does not
forgive, nor does it wait for anyone.

You may have wondered why I don't just take something stronger
for the pain. I have tried many different medications, and unfortunately a lot
of side effects. I also had
surgery which did not result in significant improvement for me, although
it has for many patients. I have developed many more cysts since my surgery in
cervical, thoracic, lumbar and sacral spine. I am not a good surgical
candidate, due to several CSF leaks requiring blood patches over the years, as
well as developing arachnoiditis, tethered cord, and Chiari. I have not made a
final decision on potential surgery in the future, but that would require
multiple surgeries due to perineural cysts at multiple locations. 

These symptomatic cysts on the spinal cord nerves are rare, and
are not related to more commonly understood problems, such as herniated or
ruptured discs. Currently, there are only a handful of courageous Neurosurgeons
and Interventional Neuroradiologists in the world who are seeing the majority
of patients with this rare disorder and are willing to attempt treatment.
Currently, the treatment outcomes are indicating a higher percentage of
improvement and many patients are much improved.

If I seem irritable or distant occasionally, it ¡s probably
because I am experiencing an increase in my symptoms. It's not how I try to be.
As a matter of fact, I try very hard to look and act normal. I hope you will
try to understand. I have been, and am still, going through a lot of change.
Chronic pain is hard to understand unless you have had it. It wreaks havoc on
the body and the mind. It is exhausting and exasperating. Almost all the time,
I know that I am doing my best to cope with this, and to live my life to the
best of my ability. I ask you to bear with me, and accept me as I am, though
changed from the way you knew me before TCs. I know that you cannot literally
understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
 

In many ways I depend on you. I need you to call or visit me
when I cannot go out. If you live with me, sometimes I need you to help me with
the shopping, cooking, cleaning, gardening. You know me well enough to know it
is very difficult for me to ask for help. You are my link to the normalcy of
life. You can help me to keep in touch with the parts of life that I miss so
much. I know that I have asked for a lot of “understanding” from you, and I do
thank you for listening to my innermost thoughts on paper. It really does mean
a lot to me that you care. My head and heart are still the same; it is my body
that has changed, and my life as I knew it before Tarlov cysts has changed. One
of my most heartbreaking moments was when my 9 month old grandson, with a big
smile on his face, reached his arms out to me to pick him up and hold him, and
I could not lift him. My grandson is now a teenager and my granddaughter is
school age; I am concerned that they will never know their grandmother as
the energetic and strong woman I once was, although I so enjoy spending time
with them. These may seem like little things, but it is sometimes those little
things that make you aware of the changes Tarlov cysts have caused. Thank you
for trying to understand what I myself do not completely understand. I
appreciate your love, concern and prayers. This new journey of learning to live
with this medical condition has blessed me in many ways. I have met many new
friends along the way and find myself surrounded by God's blessings in my life
each day.

My career was spent as a nurse and medical educator. I plan to
contribute my time and energy to the best of my ability with God's new
direction for me in my life. I have been and will continue to focus on the
future growth and operations of a Foundation, whose purpose is to promote and
fund research, improve education for the medical community and the public, advocacy for Tarlov cyst patients and for improved understanding and treatment for
Tarlov cysts. The Tarlov Cyst Disease Foundation's vision is of a future in
which Tarlov Cyst Disease is well understood, accurately diagnosed, and easily
treated, so that those afflicted should not suffer needlessly. We hope to make
the path a little easier for others with this rare diagnosis; we hope our
efforts will bring about a cure in the future.

 

God bless you for caring,
 
Reta

Reta Honey Hiers,R.N.,C., President/Executive Director

Tarlov Cyst Disease Foundation

http://www.tarlovcystfoundation.org/

retahoneyhiers@tarlovcystfoundation.org

P.S. If you are a TC patient, please feel free to print this letter and share it as is, or
edit it to make it your own to share with those you wish to better understand.


 

 

 

Back to Our Library Directory

*******

3. RESOURCES

The Foundation's Resources Directory includes sections of reading materials from medical journals that will help you to more easily access information, be better informed, and become an advocate for your own healthcare. There are abstracts, articles, and bibliography links to articles that the Foundation hopes you find useful in learning more about Tarlov cysts and related topics.

Additionally, the Foundation has provided a section titled Community Services to help you to find resources in your own community with which you may not be familiar, that offer services for assistance with basic human need resources, physical and mental health resources, crisis intervention services, support groups, counseling, financial assistance, transportation assistance and many other needs.

The hyperlinks list is a resource for locating more information in specific categories that will provide more educational resources to you .If you find some of these resources that were particularly helpful to you, please let us know about them

If there are some of the resources that do not prove helpful to you, we appreciate knowing about those too, since we will be constantly updating the Foundation's resources list. The Foundation exists to share information with you and hopes that you will share other resources that have proven beneficial to you, so that we can add them to our list, in order to benefit other site visitors.

Thank you.

  • ABSTRACTS

  • Spine:
    POST ACCEPTANCE, 7 January 2011
    doi: 10.1097/BRS.0b013e31820e4720
    Clinical Case Series: PDF Only

    Association between symptomatic giant sacral meningeal diverticulum and spinal cord tethering with thickened lipomatous filum

    Feigenbaum, Frank MD; Hale, Susan NP

    Published Ahead-of-Print
    Collapse Box

    Abstract

    Study Design. A review of cases where symptomatic sacral meningeal diverticulua, a.k.a. sacral meningoceles, where treated.

    Objective. To determine whether there is an association between symptomatic sacral meningeal diverticulum and spinal cord tethering with a thickened fatty filum.

    Summary of Background Data. In 2008 researchers reported on the unusual case of a giant sacral meningeal diverticulum containing a tethering fatty filum. This led the author to be alert to the presence of spinal cord tethering in future cases involving symptomatic meningeal diverticula. Since the time of the initial report, 49 patients with meningeal diverticula have subsequently undergone surgical treatment and not infrequently spinal cord tethering was also found. The opportunity therefore presented itself to determine to what degree the two pathologies were associated.

    Methods. We reviewed the intra-operative findings, pre-operative imaging, and basic epidemiologic data from 50 consecutively treated patients with symptomatic sacral meningeal diverticula.

    Results. Of the 50 patients, 14 (28%) were found to have associated spinal cord tethering with a thickened fatty filum. All 14 had a thickened fatty filum identifiable at surgery. Of these, 14 had evidence of spinal cord tethering on pre-operative imaging studies, including 11 with the conus at the level of L2 or below, and 13 with a fatty filum seen on MRI.

    Conclusion. The association between symptomatic sacral meningeal diverticula is more than incidental and is probably reflective of a common congenital etiology. Treatment of symptomatic meningeal diverticula should include a careful search for evidence of spinal cord tethering with a thickened fatty filum.

    (C) 2011 Lippincott Williams & Wilkins, Inc.

  • Abdominal pain secondary to a sacral peri neural cyst.

    Slipman CW,

    Bhat AL,

    Bhagia SM,

    Issac Z,

    Gilchrist RV,

    Lenrow DA.

    Penn Spine Center Research Group, Department of Rehabilitation Medicine, Hospital of University of Pennsylvania, Philadelphia, PA 19104, USA. slipman@mail.med.upenn.edu

    BACKGROUND CONTEXT: Perineural cysts are commonly found in the sacral region and are incidently discovered on imaging studies performed for the evaluation of low back and/or leg pain. PURPOSE: To report on a patient presenting with abdominal pain secondary to a large sacral perineural cyst. STUDY DESIGN/SETTING: Case report. METHODS/PATIENT SAMPLE: A 47-year-old woman was referred to a specialized multidisciplinary spine center with complaints of left lower quadrant abdominal pain and left leg pain. Of significant note was the presence of constipation and urinary frequency over the preceding 8 months. Physical examination was normal. Magnetic resonance imaging of the lumbosacral spine revealed large perineural cysts eroding the sacrum and extending to the pelvis. The presence of abdominal symptoms prompted a neurosurgical consultation. However, after considering the possible risks associated with the surgical procedure, the patient opted to follow the nonsurgical route. RESULT AND CONCLUSIONS: Although commonly visualized, sacral perineural cysts are rarely symptomatic. When symptomatic, it may be secondary to its size and location. Presence of abdominal pain in a patient with back and/or leg pain should prompt the evaluation of the lumbosacral spine.

    PMID: 14589193 [PubMed - indexed for MEDLINE]

    MRI of symptomatic sacral perineural cyst.

    Araki Y, Tsukaguchi I, Ishida T, Ootani M, Yamamoto T, Tomoda K, Mitomo M.
    Department of Radiology, Osaka Rosai Hospital, Sakai-shi, Japan.

    Sacral perineural cyst is a relatively rare condition. To our knowledge, reports of MR findings associated with sacral perineural cyst have been limited to only six cases. We present for the first time high field MR findings in a case of sacral perineural cyst. The cyst appeared as a cystic lesion in the sacral spinal canal and had intermediate signal intensity on T1W images and high signal intensity on T2*W images compared with CSF. Slight erosion remodeling of the sacrum was also seen anteriorly. Our case was symptomatic and present with radiculopathy (sciatic pain). Surgical treatment was done to result in dramatic improvement of the sciatic pain.

  • ARTICLES

    (Click on the article you wish to read)

    1. Advances in Neuropathic Pain

    2. Anatomy of the Sacrum

    3. A Word: Types of Arachnoiditis

    4. Cauda Equina Syndrome caused by Tarlov cysts

    5. Nerve Blocks 101

    6. Spinal Cord Stimulator Questions to Ask

    7. Study finds nerve damage can affect opposite side of body

    8. Surgical Management of Arachnoid Cysts with Autogenous Fat Grafts

    9. Understanding Sciatica

    10. Tethered Cords

    11. Urodynamics

    12. What Happens in Spinal Cord Injury?

    13. What is an Epidural Steroid Injection?

    14. What is a Myelogram?

    15. Two-Needle Technique for the Treatment of Symptomatic Tarlov Cysts

    ***************

    * Advances in Neuropathic Pain CME/CE

    Philippe Vaillancourt, MD Rollin M. Gallagher, MD, MPH

    Introduction

    At the 25th Annual Scientific Meeting of the American Pain Society held in San Antonio, Texas (from May 3 to 6), 36 oral papers and 400 posters were presented covering pathophysiology, genetics, pain assessment, pharmacology and therapeutics, and interventional pain management as well as psychological, ethical, and legal issues pertaining to pain medicine. The meeting gathered physicians, psychologists, basic scientists, nurses, and other professionals interested in these issues. This review covers selected topics pertaining to neuropathic pain that were presented and discussed.

    Sensitization Secondary to Spinal Cord Injury

    S. Carlton,[1] of the University of Texas Medical Branch, Galveston, Texas, presented data on sensitization secondary to spinal cord injury. Using an injury model wherein a rat's spinal cord is contused at T10, she showed that dorsal horn nuclei develop enhanced responses to peripheral stimulation not only at the thoracic level but also at the cervical level above. She recorded dorsal root reflexes in A delta and C fibers being stimulated in the dorsal horn by afferent nociceptors. Such stimulation results in antidromic volleys down sensory afferents causing neurogenic inflammation at the site of injury. This sensitization was blocked by intrathecal injection of the GABA antagonist bicuculline.

    Carlton postulated that a reverberating central-peripheral nervous system loop is established following spinal cord injury. Following such injury, a "glutamate surge" is initiated, causing central sensitization of dorsal horn nuclei and the generation of dorsal root reflexes. This results in the peripheral release of neuropeptides and inflammatory mediators, which cause neurogenic inflammation and peripheral sensitization, and in turn cause central sensitization. These findings imply that mechanisms giving rise to central neuropathic pain are not exclusively central. In fact, peripheral nociceptors contribute to pain following a central injury. Peripheral targets or interventions may therefore be appropriate for treating chronic pain in that reduction of nociceptor activity reduces central and peripheral sensitization. This may help explain the conundrum of regionalization of central pain.

    Gabapentin

    Gabapentin exhibits variable absorption, a short half-life, and a ceiling of attainable blood levels. Backonja and colleagues,[2] in a randomized, double-blind, placebo-controlled study sponsored by the manufacturer, compared the gabapentin prodrug XP-13512 (XP) with regular gabapentin (Neurontin, Pfizer Inc., New York, NY) in 101 patients with postherpetic neuralgia. XP at two thirds the equivalent dose resulted in a 17% increase in the average plasma concentration of gabapentin compared with Neurontin. In the 36% of patients who had an increase in gabapentin average concentration greater than 30%, mean pain scores were significantly reduced compared with patients in the Neurontin group. Backonja and colleagues[2] concluded that improved gabapentin exposure afforded by XP may reduce pain in postherpetic neuralgia patients compared with Neurontin.

    Fosphenytoin

    Sang and colleagues,[3] from Brigham and Women's Hospital in Boston, Massachusetts, evaluated the analgesic efficacy of fosphenytoin, a sodium channel blocker anticonvulsant, in patients with central neuropathic pain following spinal cord injury. They conducted a randomized, double-blind, placebo-controlled, crossover trial comparing a single 15-minute intravenous (IV) infusion of fosphenytoin 12-mg phenytoin equivalents (PE)/kg (the dose unit for fosphenytoin is expressed as a milligram equivalent of the phenytoin dose or "PE/kg"), fosphenytoin 4 mg PE/kg, lidocaine 2 mg/kg, and saline. Using a 21-point log-linear Gracely scale, they looked at the percentage of change from baseline in overall pain intensity. In the 12-mg PE/kg group, peak reduction in mean pain intensity was 50% at 45 minutes following the start of the infusion with a significant reduction compared with placebo over the entire 4-hour testing period. Trends were present but not statistically significant for the fosphenytoin 4-mg PE/kg and lidocaine 2-mg/kg groups. Fosphenytoin was well tolerated. It may well be that other sodium channel blockers in doses high enough to achieve significant serum levels may be effective in treating central neuropathic pain resulting from spinal cord injury.

    Tapentadol

    In a series of reports, Tzschentke and colleagues[4] and Terlinden and colleagues,[5] from Aachen, Germany, presented data on tapentadol, a new centrally acting analgesic with a dual mode of action: mu-opioid receptor agonism and inhibition of norepinephrine reuptake. The studies were all supported by the manufacturer Grunenthal GmbH. The drug was effective in a series of pain models in the rat, which included a sciatic nerve ligature model for neuropathic pain. Its potency was between that of morphine and tramadol. The drug achieved satisfactory serum levels after both IV and oral administration. It was generally well tolerated. The most common adverse effects associated with increasing IV tapentadol were sleepiness, vertigo, dry mouth, and nausea. Phase 3 clinical trials are planned for the near future in the United States. Tapentadol's mu agonism and inhibition of norepinephrine reuptake make it similar to tramadol. However, tramadol consists of a racemic mixture of negative and positive enantiomers. The drug's mu agonism depends on transformation of the positive enantiomer into an active "M-1" metabolite. The norepinephrine reuptake inhibition is mediated by the negative enantiomer. Tapentadol, on the other hand, requires no metabolism to be pharmacologically active. Both its mu-receptor agonism and norepinephrine reuptake inhibition are mediated by the same molecule. This may explain why its potency is higher than tramadol.

    Lacosamide

    Lacosamide is a drug under clinical development for the treatment of epilepsy and neuropathic pain by Schwarz BioSciences. In a multicenter, randomized, double-blind, placebo-controlled parallel group trial sponsored by the manufacturer, Kenney and colleagues[6] studied the effects of lacosamide at 200, 400, and 600 mg/day compared with placebo in a group of 469 subjects with painful distal diabetic neuropathy. In total, 33.6% to 68.2% of subjects across the groups completed the study, with the highest dropout rate occurring in the lacosamide 600-mg/day group. The incidence of side effects was also highest in this group. The primary variable was change in average daily pain score from baseline to the last 4 weeks of the maintenance phase on the basis of a 0-10 pain Likert scale. Secondary variables included assessment of pain at each visit with a 100-mm Visual Analog Scale, assessment of pain interference with sleep and activity, quality of life, and global impression of change in pain.

    The change from baseline to the last 4 weeks of the maintenance phase in the Likert pain score (primary variable) was statistically significant in the lacosamide 400-mg group compared with placebo. Lacosamide 400 and 600 mg/day significantly reduced pain scores in patients with diabetic neuropathy during the entire titration and maintenance period as well as for the entire 18-week treatment period. Overall, 24.3% of patients dropped out of the trial on account of adverse effects. Lacosamide 400 mg was better tolerated than the 600-mg/day dose. Adverse effects appearing to possibly be dose-related included blurred vision (0% in the placebo group, 2.4% in the 400-mg group, and 5.1% in the 600-mg group), nausea (6.2%, 7.2%, and 18.2%, respectively), dizziness (4.6%, 21.6%, and 28.6%, respectively), tremor (0%, 9.6%, and 14.6%, respectively), somnolence (0%, 8%, and 8.8%, respectively), and imbalance (0%, 4.8%, and 9.5%, respectively).

    Bicifadine

    Bicifadine, a balanced inhibitor of norepinephrine and serotonin reuptake, was studied in 2 rat models of neuropathic pain by Basile and colleagues[7] in experiments supported by the manufacturer. Oral bicifadine suppressed both thermal and mechanical hyperalgesia in the Chung model of spinal nerve ligation-induced neuropathic pain with a duration of action of at least 4 hours. Mechanical allodynia in the Chung model was reduced with a maximum action at 40 mg/kg, an effect comparable to gabapentin 300 mg/kg. Mechanical hyperalgesia as measured in the streptozotocin-treated rat model of diabetic painful neuropathy was significantly inhibited by bicifadine. The drug is currently in phase 3 clinical development for the treatment of chronic low back pain with and without neuropathic symptoms.

    Complex Regional Pain Syndrome

    An interesting report of a patient with complex regional pain syndrome (CRPS) of both lower extremities treated with botulinum toxin was presented by Prager and Zerovich,[8] from UCLA. The patient was a 36-year-old woman who presented with the spontaneous onset of symptoms that were suggestive of CRPS in both legs. She responded for a finite period to antiepileptic drugs and tricyclic antidepressants. She then responded to lumbar sympathetic blockade at the L2 level with bupivicaine and triamcinolone, or bupivicaine and fentanyl for 1-3 weeks. A sympathetic block with 0.25% bupivicaine 15 mL and botulinum toxin type B 5000 units bilaterally resulted in 3 months of symptom relief. The blocks were repeated with botulinum toxin type A 50 units and bupivicaine 2.5 mL bilaterally at the L2 and L3 levels with similar results. In a personal communication, one investigator of this study reported similar results in a patient with CRPS of the upper extremity blocked with botulinum toxin combined with bupivicaine at the superior stellate ganglion. The presumed mechanism of action may be inhibition of acetylcholine exocytosis at the sympathetic ganglionic synapse. If these results can be replicated, sympathetic blockade with botulinum toxin may represent a significant improvement over a conventional block with anesthetic alone for the treatment of this often recalcitrant problem.

    Conclusion

    Neuropathic pain results from an affliction anywhere along the neuraxis from cortical neurons down to neurons in the anterior horn cell or in ganglia of the peripheral nervous system. Its causes include structural damage by disease, trauma, metabolic disturbance, and infection. It is often admixed with pain generated through stimulation of the peripheral pain receptors (nociceptive pain). It is frequently amplified by disordered mood. Increased understanding of its mechanisms, new drugs in the pipeline, new ways of using drugs that are already available, and novel interventional techniques, such as those described in this review, all contribute to the therapeutic armamentarium and allow us to chip away at the formidable nature of the problem.

    References

    • Carlton S, Willis W, Jasmin L. Peripheral sensitization and inflammation: sensory nerves are a two way street. Program and abstracts of the 25th Annual Scientific Meeting of the American Pain Society; May 3-6, 2006; San Antonio, Texas. Oral Session 304.

    • Backonja M, Cundy K, Canfax D. Gabapentin exposure and pain reduction in patients with post herpetic neuralgia: analysis of a phase 2a randomized, double blind, placebo controlled study of Neurontin and XP13512. Program and abstracts of the 25th Annual Scientific Meeting of the American Pain Society; May 3-6, 2006; San Antonio, Texas. Poster 745.

    • Sang C, Jenkins K, Wang K, Sarin A, Coccoli S. Fosphenytoin relieves neuropathic pain following spinal cord injury. Program and abstracts of the 25th Annual Scientific Meeting of the American Pain Society; May 3-6, 2006; San Antonio, Texas. Poster 692.

    • Tzchentke TM, De Vry J, Christoph T, et al. Tapentadol HCl: analgesic profile of a novel centrally active analgesic with dual mode of action in animal models of nociception, inflammatory and neuropathic pain Program and abstracts of the 25th Annual Scientific Meeting of the American Pain Society; May 3-6, 2006; San Antonio, Texas. Poster 687.

    • Terlinden R, Ossig J, Fliegert F, Gohler K. Pharmacokinetics, excretion and metabolism of tapentadol HCl, a novel centrally acting analgesic in healthy subjects. Program and abstracts of the 25th Annual Scientific Meeting of the American Pain Society; May 3-6, 2006; San Antonio, Texas. Poster 689.

    • Kenney P, Simpson J, Koch B. SP768 study group. A multi-center randomized double blind placebo controlled trial to assess the efficacy and safety of lacoamide (200, 400 and 600 mg/day) in subjects with painful distal diabetic neuropathy. Program and abstracts of the 25th Annual Scientific Meeting of the American Pain Society; May 3-6, 2006; San Antonio, Texas. Poster 774.

    • Basile AS, Koustova E, Lippa A, Skolnick P. Bicifidine is an efficacious analgesic in animal models of neuropathic pain. Program and abstracts of the 25th Annual Scientific Meeting of the American Pain Society; May 3-6, 2006; San Antonio, Texas. Poster 667.

    • Prager J, Zirovich MD. Case report: use of botulinum toxin for sustained sympathetic blockade. Program and abstracts of the 25th Annual Scientific Meeting of the American Pain Society; May 3-6, 2006; San Antonio, Texas. Poster 791.

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    * Anatomy of the Sacrum

    \

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    * A Word: Types of Arachnoiditis

Types of Arachnoiditis

Friday, 18 March 2005

The National Organisation for Rare Disorders (NORD) divides the condition thus:

  • Disorder Subdivisions

  • Adhesive Arachnoiditis

  • Arachnoiditis Ossificans

  • Neoplastic Arachnoiditis

  • Optochiasmatic Arachnoiditis

  • Postmyelographic Arachnoiditis

  • Rhinosinusogenic Cerebral Arachnoiditis

  • Spinal Ossifying Arachnoiditis

Under the International Classification of Diseases (ICD-9-CM) the following classification is used for arachnoiditis:

  • 320 bacterial meningitis

  • 321 meningitis due to other organisms

  • 322 meningitis of unspecified cause

Arachnoiditis may be present in anyone who has had spinal injury, surgery or introduction of foreign substances, but in its most common form, arachnoid adhesions, tiny areas of scar material, it causes no clinically significant problems in the majority of patients.

The second type is local arachnoiditis, which generally results from some local insult to the subarachnoid space, such as injury or surgery.

This involves a larger, but still localised area of adhesions, which, again, may not cause symptoms.

However, this may constitute an undetected 'time bomb' which lurks for years and then precipitates symptoms suddenly apparently out of the blue after a seemingly innocuous event such as a fall or minor car accident.

The exact reason for the sudden sustained exacerbation of symptoms and sometimes decline is not known, although it may be due to bleeding into the CSF, with subsequent inflammation and proliferation of scar tissue, to the extent that nerve roots become sufficiently compromised to precipitate overt clinical symptoms and signs.

The most severe type, which is more likely to cause symptoms, is adhesive arachnoiditis.

This can be mild, moderate or severe, and either focal (localised) or diffuse. The latter type tends to result from insults involving introduction of foreign substances into the subarachnoid space.

It may rarely be progressive. In adhesive arachnoiditis arising due to injections into the spinal fluid, (chemically-induced adhesive arachnoiditis), the more widespread damage may also be associated with systemic symptoms.

Spinal adhesive arachnoiditis may be localized: at one vertebral level segmental: in two or more levels within a spinal region e.g. lumbar contiguous: in two or more adjacent vertebral levels diffuse: if spread over more than one spinal region e.g. lumbar and thoracic.

In the 1999 Global survey, I found the following levels of lesions:

  1. Lumbar: 87%

  2. Thoracic: 23%

  3. Cervical: 34%

  4. Cranial: 14% of which brainstem 1 case

Widespread (more than 1 level): 91 cases of which 23 had cranial involvement;

45% of respondents who had undergone an oil-based myelogram had widespread arachnoiditis; compared with 21% of those who had had a water-based myelogram, 27% of those who had unspecified dye, and 8% of those who had had an epidural injection of some kind.

Pachymeningitis

Aldrete ([i]) contends that pachymeningitis is "probably one of the most severe advanced anatomopathological phases" of arachnoiditis, being characterised by proliferation of scar tissue to the extent of encasing the spinal cord and nerve roots.

Pachymeningitis affects the dural layer of the meninges.

Wilson ([ii]) suggested that the subdural space reacts to the insult of an irritant by producing a well-organised, laminar (layered) fibrosis that resembles a healing subdural haematoma.

This level of severity confers serious clinical consequences such as hemiparesis, dysphasia, blurred vision etc.

Arachnoiditis in the cauda equina can cause a chronic cauda equina syndrome.

This involves pain and sensory disturbance and weakness in the lower limbs, with saddle anaesthesia and bladder, bowel and sexual dysfunction.

A rat study ([iii]) demonstrated the deleterious effects that cauda equina adhesions have upon supply of nutrients to the nerve roots: in complete cauda equina adhesion, the glucose transport to the cauda equina from the cerebrospinal fluid was reduced by 72% compared with the normal cauda equina.

The authors concluded:

"Considering the greater nutritional importance of the cerebrospinal fluid in the cauda equina, it is most likely that the impairment of nutritional supply to adhered cauda equina may lead to eventual neural degeneration."

If the spinal cord is affected, there may be areas of ischaemic damage, myelomalacia (softening of the tissue) and formation of cysts.


[i] Aldrete JA Arachnoiditis: The Silent Epidemic, 2000 JGH Editores.

[ii] Wilson SAK Pachymeningitis spinalis hypertrophica In AN Bruce (ed.) Neurology Vol. 1; Baltimore, Wilkins & Wilkins, 1940 pp.9-11

[iii] Miaki K, Matsui H, Nakano M, Tsuji H. Eur Spine J 1999;8(4):310-6 Nutritional supply to the cauda equina in lumbar adhesive arachnoiditis in rats.

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* Cauda equina syndrome caused by Tarlov cysts

Case report
[Original Article in Polish ,Translated to English]

_Nicpon KW_
(http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&itool=PubMed_
Abstract&term="Nicpon+KW"[Author]
) ,

_Lasek W_
(http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&itool=PubMed_
Abstract&term="Lasek+W"[Author]
) ,

_Chyczewska A_
(http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&itool=PubMed_
Abstract&term="Chyczewska+A"[Author]
) .

Oddzialu Neurologiczno-Rehabilitacyjnego Szpitala Miejskiego w Bydgoszczy.
nicpon@byd.top.pl

Perineural Tarlov cysts located on lumbo-sacral roots can be a cause of cauda equina syndrome.

OBJECTIVES:
1) To draw attention to the fact that multiple Tarlov lumbo-sacral perineural cysts can produce serious movement disturbances.
2) To document the usefulness of the magnetic resonance imaging in noninvasive diagnosis of perineural cysts.

CASE DESCRIPTION: A male patient, 80 years of age, suffered from progressive weakness of lower limbs, which caused an increasing drop of the feet. The disease began in August 2000, following a long journey by train. The patient additionally complained of urinary incontinence as result of sneezing, coughing or fast walking. The urologist did not find prostatic gland hypertrophy. An examination by the internist revealed atheromatous myocardiopathy in circulation failure stage. Magnetic resonance imaging showed multiple perineural cysts up to 15 mm in diameter on lumbo-sacral roots. This clinical picture, supported by the magnetic resonance imaging allowed to recognize cauda equina syndrome caused by Tarlov lumbo-sacral perineural cysts.

DISCUSSION: This case is a reminder, that part of perineural cysts, particularly multiple, can be a cause of nerve roots injury, and their lumbo-sacral location can produce cauda equina syndrome. As reported by Zarski and Leo, Tarlov cysts were cause of 7.3% of pain syndrome cases 2 patients in the study group showed lower limb claudication. Magnetic resonance imaging of patients with back pain, performed by Paulsen, Call and Murtagh, revealed that Tarlov cysts occurred in 4.6% of patients, but only 1% had the symptoms connected with the presence of those cysts. In available Polish literature no report has been found referring to fixed cauda equina syndrome which was caused by multiple cysts revealed through the magnetic resonance imaging of spinal canal. Only Zarski and Leo, discussing the correlation between the clinical and radicographic picture, described transient cauda equina syndrome in two patients who, beside Tarlov cysts, were also found to have intervertebral lumbosacral disc herniation. Tarlov was the first to describe well documented cauda equina syndromes caused by cysts on the lumbo-sacral roots. It is necessary to emphasize the established role of magnetic resonance of spinal canal in the diagnosis of perineural cysts on the lumbo-sacral roots as well as other anatomical anomalies of cerebrospinal fluid spaces. Despite the fact that cauda equina syndrome in the case reported here was a serious complication of multiple Tarlov cysts in the lumbo-sacral region, a surgical treatment was not undertaken; in such cases this treatment should be the chosen procedure.

CONCLUSION: Multiple perineural Tarlov cysts in lumbo-sacral region, without disc herniation or other cause of vertebral canal stenosis, can produce cauda equine syndrome.

Publication Types:
* _Case Reports_ (javascript:AL_get(this, 'ptyp', 'Case Reports');)
PMID: 12053609 [PubMed - indexed for MEDLINE]

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* NERVE BLOCKS 101

What are blocks?

Blocks are injections of medication onto or near nerves. The medications that are injected include local anesthetics, steroids, and opioids. In some cases of severe pain it is even necessary to destroy a nerve with injections of phenol, pure ethanol, or by using needles that freeze or heat the nerves. Injections into joints are also referred to as blocks. Although not technically correct, such "shorthand" is commonly used.

1. Blocks with local anesthetic can be used to control acute pain. (Hence, the shot at the dentist or the epidural block for a surgery or a delivery.)

2. Pain and injury often makes nerves more sensitive, so that they signal pain with less provocation. Think about lightly brushing against your skin when you have a sunburn. Blocks can provide periods of dramatic pain relief, which promotes the desensitization of sensory pathways.

3. Steroids can help reduce nerve and joint inflammation and can reduce the abnormal triggering of signals from injured nerves.

4. Blocks often provide diagnostic information, helping to determine the source of the pain.

Remember, blocks are not the best treatment for all pain problems.

Spinal Injections:

The most common spinal injection is the lumbar epidural steroid injection. This is particularly useful for pain that radiates from the lower back into a leg, and is caused by disc herniation or spinal stenosis (narrowing around the nerves) which triggers nerve root irritation. Similar injections can be very useful in the cervical spine, where the symptoms will extend into the arms. Thoracic epidural steroid injections are most commonly used to reduce the pain associated with herpes zoster (shingles). Such blocks may reduce the risk of developing persistent postherpetic neuralgia (i.e., pain which persists long after the skin eruption has healed).

The facet joints of the spine can also cause pain. Injections into the facet joints or blocks of the nerves that go to the facets can often be very helpful with these pains. This problem is more common in the lumbar spine, but also occurs in the neck.

Discograms (intradiscal injections of contrast under fluoroscopy or CT imaging) can determine if and which disc is the source of the pain. This can help a surgeon determine which levels of the spine require surgery. If the patient is found to have a painful disc, they may be a candidate for a new and promising technique, intradiscal electrothermoplasty (IDET). In a procedure similar to a discogram, a wire is temporarily inserted into the disc and used to heat the disc. This destroys the invading sensory nerves and causes the proteins of the disc wall to reshape and slowly strengthen (over 3-6 months). The procedure cannot be done if the disc has already severely degenerated.

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* Spinal Cord Stimulator Questions to Ask

If your chronic pain has not responded to a progressive plan of pain management (the chronic pain treatment steps), spinal cord stimulation (SCS) may be an option. An open and honest talk with your physician will help to determine if you are a good candidate for this treatment option.

You may want to ask the following questions:

Is spinal cord stimulation a treatment option for my chronic pain condition?

Spinal cord stimulation works best for unresolved neuropathic pain in the trunk and/or limbs. It is unlikely that spinal cord stimulation will relieve nociceptive pain. Ask your physician if the cause, type, and location of your pain make you a candidate for spinal cord stimulation.

Remember, in the context of the chronic pain treatment steps, spinal cord stimulation is an advanced pain treatment. This means that spinal cord stimulation is generally not considered a treatment option until other pain therapies including analgesics, NSAIDs, nerve blocks, and perhaps even surgery have been tried and have failed to control your pain.


What is your experience with spinal cord stimulation?

Ask about your physician's clinical experience with spinal cord stimulation. Has he or she prescribed spinal cord stimulation for other patients? What kind of pain conditions did they have and what type of system did he or she prescribe for them? Did spinal cord stimulation provide good outcomes for these patients? If yes, what made spinal cord stimulation therapy successful? If no, was there a common factor that contributed to the therapy's lack of success? Are there patients I can talk to who had similar pain complaints and have undergone SCS therapy? Does the physician have an SCS patient I can talk to?

Some physicians may be familiar with spinal cord stimulation but do not have direct experience with it. If this is the case and you are a potential candidate for spinal cord stimulation therapy, your physician may refer you to a pain specialist for treatment and evaluation, or your health plan may permit you to visit other physicians without a referral.


Are you recommending an implantable pulse generator (IPG), rechargeable IPG, or a radio-frequency (RF) spinal cord stimulator?

Each type of system has advantages and disadvantages. The decision should be based on the pattern and complexity of your pain, your lifestyle, and how much electrical energy will be required to give you adequate pain relief.

If an IPG system is being recommended, ask

  • How likely is it that my pain will worsen or spread over time?

  • If my pain pattern were to spread or worsen over time, would the IPG still be capable of providing sufficient coverage?

  • Is the IPG's power capacity and programming capabilities sufficient to provide complete stimulation coverage of all painful areas?

  • How often will the IPG need to be replaced?

  • What does the procedure for IPG replacement entail?

If a rechargeable IPG system is being recommended, ask

  • Will the system ever need to be replaced?

  • Based on my power requirements, how often will I need to recharge the system?

  • How long does it take to recharge the system?

  • How long does it take to recharge the system?

  • Are there any safety issues related to recharging?

  • Can the system die if not recharged regularly?

  • What is the procedure for replacing a rechargeable IPG system?

If an RF system is being recommended, ask

  • If my pain changes or spreads, what are my options?

  • Is the RF system's power capacity and programming capabilities sufficient to provide complete stimulation coverage of all painful areas?

  • How do patients with RF systems incorporate the transmitter into their daily attire?

  • Can I see the RF system components? Seeing the antenna and transmitter may help you make your decision.


During the trial period, will I be able to test the IPG, rechargeable IPG, and RF programs?

A trial implantation is one of the most important ways to determine if spinal cord stimulation therapy will give you enough pain relief.

A multi-program trial takes this degree one step further. A multi-program trial not only allows you to test if spinal cord stimulation is effective, but it also allows you to see which type of system IPG, rechargeable IPG, or RF might be best for your situation.

A multi-program trial involves placing several stimulation programs into a trial spinal cord stimulator. These programs can recreate the stimulation provided by an IPG, rechargeable IPG, or RF system. By recreating these systems, you can try the features of each to see which one provides the greatest pain relief. It also gives you an idea of which system is more appropriate in terms of the power requirements you need to attain sufficient pain relief.

A multi-program trial is an important advantage when considering stimulation systems. It can help ensure that you receive a stimulator capable of the providing you with the greatest level of pain relief, both now and over time.

When you talk with your physician about the trial, ask

  • How do you determine if an IPG, rechargeable IPG, or RF system is best?

  • Will you conduct a multi-program trial that allows me to test the IPG, Rechargeable IPG, and RF systems?

  • What type of lead and how many electrodes will you implant during the trial? Do you use extra electrodes in order to cope with pain or leads that move?

  • How long does the trial last? Under what circumstances would you extend or shorten the trial?

  • If the stimulation is not very effective in providing pain relief, will you reprogram the system and extend the trial or choose to remove the system?

  • If the trial is successful, how soon will the permanent system be implanted?

  • Will you involve me in the decision about which permanent system will be implanted?


What are the programming features of the system that will be implanted?

Programmability is one of the most important features of a spinal cord stimulator. The greater the programmability, the greater the likelihood that the system can provide you with enough pain relief. A spinal cord stimulator with extra programming features is more adaptable if your pain relief needs change over time.

Your physician should want to implant the system that offers the greatest chance for success. You can better discuss this with your physician by knowing about the features and capabilities of the IPG, rechargeable IPG, and RF systems that are currently available.

When discussing the systems, ask your physician

  • Which type and model of stimulator do you recommend and why?

  • If an IPG is being considered, can you estimate the amount of energy required to achieve enough pain relief for my pain condition and how long the battery will last?

  • If a rechargeable IPG is being considered, how often will the system need to be recharged? How long does this recharging usually take? How much time will pass before I need to recharge again?

  • What type of lead and how many electrodes will you implant? Will you place more electrodes than what might be currently necessary in case my pain pattern or the location of my pain changes in the future?

  • Are there any safety issues with certain systems?

  • What is the system's capability for electronically repositioning the lead(s) using the external programmer/transmitter?

  • How many of your patients with this type of system have had another surgery to reposition their leads?

  • How many and what type of stimulation programs does the system offer? If only one or two, is this enough to cover my pain pattern?

  • Does a system that offers more stimulation programs offer greater control over my pain therapy and increase my chances for success over the long-term?

  • Will I be able to manually select stimulation programs stored in the system, or does changing programs require an office visit?

  • Can I help choose the system to be implanted?


What can I do to improve my chances for success with spinal cord stimulation?

It takes a team effort to get a good outcome with spinal cord stimulation (defined as a decrease in pain of 50 percent or more). Your physician and/or his or her staff or a representative will program your spinal cord stimulator and teach you how to use it. But from that point on, success depends on your willingness to participate fully in your therapy.

You can start by asking your physician

  • What can I do to improve my chances for success?

  • How long will it take me to heal after the implantation surgery?

  • Do I have to restrict physical activities? For how long?

  • How often will I return for follow-up visits?

  • When can I get back to interests and activities?

  • What have other patients done during and after their recovery that made a difference in their outcomes?

Taking charge of your therapy is the first step to recovery and a world of new possibilities for a better quality of life.

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* Study finds nerve damage can affect opposite side of body
MGH report suggests previously unknown communication between nerve cells

BOSTON - April 2, 2004 - Researchers from Massachusetts General Hospital (MGH) have found physical evidence of a previously unknown communication between nerves on opposite sides of the body. In the May 2004 issue of Annals of Neurology, the scientists describe how cutting a major nerve in one paw of a group of rats resulted in a significant decrease in skin nerve endings in the corresponding area of the opposite limb. The study, released on the journal's website, may have major implications for the care of patients with nerve damage and also calls into question the common practice of using tissues on the opposite side of the body as controls in scientific experiments.

"Patients with pain syndromes related to nerve damage sometimes report symptoms on the side opposite their injury as well, but those reports are usually discounted because there has been no biological framework for the phenomenon," says Anne Louise Oaklander, MD, PhD, director of the MGH Nerve Injury Unit, the report's principal author. "Our evidence means that these reports can no longer be ignored and gives us a new direction for research."

It has been known for more than 100 years that, when a nerve is cut, skin nerve endings in the area supplied by that nerve quickly disappear. This is because nerve cell bodies are actually located near the spinal cord, and nerve fibers called axons extend into the limbs. When axons are severed, downstream nerve endings are cut off from the cell body and die.

Reports of opposite-side sensory effects of injury date back to the American Civil War. However, no connections are known to exist between nerve cells supplying corresponding areas on the left and right sides. In previous research Oaklander and her colleagues examined nerve endings in patients with post-herpetic neuralgia - persistent pain in an area of skin previously affected by shingles, also called herpes zoster. Along with an almost total loss of nerve endings at the site of the shingles outbreak, they also found that almost half the nerve endings on the opposite side skin had been lost, even though patients did not report pain on that side. But since shingles is caused by the varicella zoster virus, which also causes chicken pox, there was a possibility that the damage had been caused by viral spread through the spinal cord.

In the current study, Oaklander and her co-author Jennifer Brown describe their experiment in three groups of rats - an experimental group in which the tibial branch of the sciatic nerve was cut in one hind paw and two control groups, one which had sham surgery and the other had no procedures. Within one week of injury, rats in the experimental group lost almost all skin nerve endings in the part of the paw supplied by the tibial nerve. Surprisingly, they also lost 54 percent of nerve endings in the corresponding area in the opposite paw. No changes were seen in either control group. The researchers also examined the opposite-limb-area supplied by the uncut nearby sural branch of the sciatic nerve and found no change in nerve endings.

"This loss of nerve fibers in the contralateral limb is so precise - being confined to areas innervated by the matching nerve - that the communication is likely to involve nerve cells or the supporting glial cells," says Oaklander, an assistant professor of Anesthesia and Neurology at Harvard Medical School. "We need to look into what regulates this communication and how it may be altered to help treat nerve injury and pain patients."

This study was supported by grants from the National Institutes of Health and a Paul Beeson Award from the American Federation for Aging Research.

Massachusetts General Hospital, established in 1811, is the original and largest teaching hospital of Harvard Medical School. The MGH conducts the largest hospital-based research program in the United States, with an annual research budget of more than $400 million and major research centers in AIDS, cardiovascular research, cancer, cutaneous biology, medical imaging, neurodegenerative disorders, transplantation biology and photomedicine. In 1994, MGH and Brigham and Women's Hospital joined to form Partners HealthCare System, an integrated health care delivery system comprising the two academic medical centers, specialty and community hospitals, a network of physician groups, and nonacute and home health services.

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Surgical Management of Arachnoid Cysts
with Autogenous Fat Grafts

This is the book cover of the classic 1971 publication by neurosurgeon Isadore Tarlov on the subject of sacral nerve root cysts. Initially Tarlov thought that these cysts were always benign but it soon became known by clinicians that, in some cases, these cysts were capable of becoming another important cause of the "Sciatic or Cauda Equina Syndrome".
When sacral nerve root cysts increase in size and internal tension to the point where they actually erode adjacent bone they require surgical intervention. Present options for treatment vary. A recent neurosurgical paper advocated shunting these cysts to the abdomen. With respect to William of Occam's Razor the Editor is pleased to present a series of examples of sacral nerve root (Tarlov) cysts treated effectively by other means.
In order to fully appreciate the series of cases being presented one needs to recognize the fact that a typical "Tarlov Nerve Root Cyst" is only an interesting finding on an MRI scan, having no clinical significance . An example of this is shown (incidental finding) on a routine MRI scan. The red dot identifies the cyst.

Since Tarlov's pioneering work it has been recognized that the sometimes tenuous communication of these congenital cysts to the subarachnoid space (and the cerebrospinal fluid) can become partially or completely occluded. When partially occluded (usually due to the obstruction produced by proteinaceous material) a "ball valve" phenomenon can occur where fluid can enter and not leave. In such events the tension within the cysts gradually increases producing erosion of surrounding bone and compression of local nerves.

These images show the case of a 48 year old female who was progressively incapacitated by leg pain and numbness. In addition to a large sacral cyst eroding the sacrum the nerve roots (shown with a green dot) were clumped together from local adhesive arachnoiditis. The surgical view shows the opened cyst. Autogenous, soft, fat grafts, were used to fill the defect. Following decompression the patient experienced immediate relief of all symptoms. The image to the left shows a post-operative CT scan with a label over the fat graft.

Immediately above is another case of a large sacral cyst (red dot) extending from L5-S3 and eroding bone. The surgical view of the opened cyst reveals nerve roots adherent to the dura demonstrating adhesive arachnoiditis. This patient was also successfully treated with an autogenous fat graft.

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The following series of cases show progressively more severe cases of clinically significant arachnoidal cysts. In the case to the left erosion of the sacrum has just begun.
Here a prominent cyst complex is evident. In the saggital view it the cyst has extended itself through the anterior sacrum into the retroperitoneal space.

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In this example the bone destruction has been so great that the stability of the sacrum itself has become a matter of concern.

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The Burton Experience, over the years, in treating clinically significant sacral nerve root cyst problems, over the years, has conformed that appropriate fat grafting techniques are the most effective in dealing with these entities. Other treatment modalities often create more problems than they solve.

An example of this is the case shown to the left where a fibrin glue was injected into the cyst (red dot). This glue is now adherent to the nerve roots and any attempted surgical dissection runs the high risk of associated nerve injury.

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* UNDERSTANDING SCIATICA

Low back pain and/or leg pain that usually travels down the large sciatic nerve, from the lower back down the back of each leg, is generally referred to as sciatica and is fairly common. This pain can be caused when a nerve root in the lower spine that helps form the sciatic nerve is pinched or irritated.

Sciatica is usually caused by pressure on the sciatic nerve from a herniated disc (also referred to as a ruptured disc, pinched nerve, slipped disk, etc.) in the lumbar spine. The problem is often diagnosed as a "radiculopathy", meaning that a disc has protruded from its normal position in the vertebral column and is putting pressure on the radicular nerve (nerve root) in the lower back, which forms part of the sciatic nerve.

Sciatica occurs most frequently in people between 30 and 50 years of age. Often a particular event or injury does not cause sciatica, but rather it may develop as a result of general wear and tear on the structures of the lower spine. The vast majority of people who experience sciatica get better with time (usually a few weeks or months) and find pain relief with non-surgical treatments.

Practical point:
Symptoms of sciatica pain can vary greatly but usually decreases after a few weeks or months with non-surgical treatment.

Understanding sciatica pain
For some people, the pain from sciatica can be severe and debilitating. For others, the pain might be infrequent and irritating, but has the potential to get worse. Usually, sciatica only affects one side of the lower body, and the pain often radiates from the lower back all the way through the back of the thigh and down through the leg. Depending on where the sciatic nerve is affected, the pain may also radiate to the foot or toes.

One or more of the following sensations may occur as a result of sciatica:

  • Pain in the rear or leg that is worse when sitting

  • Burning or tingling down the leg

  • Weakness, numbness or difficulty moving the leg or foot

  • A constant pain on one side of the rear

  • A shooting pain that makes it difficult to stand up

  • Low back pain may be present along with the leg pain, but usually the low back pain is less severe than the leg pain

While sciatica can be very painful, it is rare that permanent nerve damage (tissue damage) will result. Most sciatica pain syndromes result from inflammation and will get better within two weeks to a few months. Also, because the spinal cord is not present in the lower (lumbar) spine, a herniated disc in this area of the anatomy does not present a danger of paralysis.

Symptoms that may constitute a medical emergency include progressive weakness in the leg or bladder/bowel incontinence. Patients with these symptoms may have cauda equina syndrome and should seek immediate medical attention. In general, patients with complicating factors should contact their doctor if sciatica occurs, including people who: have been diagnosed with cancer; take steroid medication; abuse drugs; have unexplained, significant weight low; or have HIV.

Any condition that causes irritation or impingement on the sciatic nerve can cause the pain associated with sciatica. The most common cause is a lumbar herniated disc. Other common causes of sciatica include lumbar spinal stenosis, degenerative disc disease, or isthmic spondylolisthesis.

Sciatica medical definition
To clarify medical terminology, the term sciatica (often misspelled as ciatica or siatica) is often used very broadly to describe any form of pain that radiates into the leg. However, this is not technically correct. True sciatica occurs when the sciatic nerve is pinched or irritated and the pain along the sciatic nerve is caused by this nerve (radicular pain). When the pain is referred to the leg from a joint problem (called referred pain), using the term sciatica is not technically correct. This type of referred pain (e.g. from arthritis or other joint problems) is quite common.

Sciatica treatments
Sciatica nerve pain is caused by a combination of pressure and inflammation on the nerve root, and treatment is centered on relieving both of these factors. Typical sciatica treatments include:

  • Non-surgical sciatica treatments, which may include one or a combination of medical treatments and alternative (non-medical) treatments, and almost always includes some form of exercise and stretching. The goals of non-surgical treatments should include both relief of sciatica pain and prevention of future sciatica problems.

  • Sciatica surgery, such as microdiscectomy or lumbar laminectomy and discectomy, to remove the portion of the disc that is irritating the nerve root. this surgery is designed to help relieve both the pressure and inflammation and may be warranted if the sciatic nerve pain is severe and has not been relieved with appropriate manual or medical treatments.

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* Tethered Cords
 

Tight Filum Terminale Diastematomyelia
Dermal Sinus Tracts Lipomyelomeningocele

 

Tethered cord syndrome

This term describes a range of signs and symptoms consequent to the tethering of a spinal cord at any level. It is often associated with spina bifida occulta and spinal dysraphism. It is diagnosed after an investigation of the embryology, pathophysiology and clinical symptoms using diagnostic neuro-imaging, and examination and observation of the patient. It is "classically defined as having the tip of the [spinal] cord below the L2 vertebra instead of at the L1-L2 disc space level" [Selcuki and Coskun, 1998]. Tethered spinal cords are non-life-threatening congenital conditions, but the consequences of not recognising, not monitoring, and in most cases not correcting, them can be deformed feet and legs, progressive neurological impairment, and, at worst, paralysis and incontinence, depending on the severity and type of cord tethering.

Normal spinal cordThe normal spinal cord begins at the junction of the skull with the cervical (neck) spine, and the cord continues down the spinal column until the mid-back region, the lumbar area. Beyond this point nerves continue down the spinal canal (as the cauda equina) and the spinal cord ends with the non-functioning tissue known as the filum terminale, which usually has the elasticity similar to a rubber band. The cord and the spinal bones (vertebrae) initially start out the same length but as the foetus and child grows, the vertebrae grow faster than the cord and therefore the cord effectively "ascends" within the spinal column. In people with no tethered cord the spinal cord ends up hanging freely within the vertebrae, protected by cerebrospinal fluid and, as there is no obstruction to its movement, it is able to flex and move freely with everyday activities.

I had reservations about including all the following details in this section, but it may help to explain the embryology and creation of tethered cords.
(Source of information: http://www.yoursurgery.com/ ).

A tethered spinal cord is characterised by an abnormal attachment of the distal spinal cord to the surrounding tissues. The lower end of a normal spinal cord is found in the upper lumbar spinal canal. The attachment to the spinal canal or bones usually causes the spinal cord to end lower in the lumbar or sacral spinal canal. In the majority of cases, it is congenital (the patient is born with it).

Developmental Anatomy

  • In the developing foetus the spinal cord is formed by a complex process. It forms from the same layer of cells that later forms the skin (called the ectoderm)

  • Beginning around the 18th day of development and extending to the 22nd day, the spinal cord is formed by a process called neurulation

1. The ectodermal layer thickens in the midline of the back forming neuroectoderm that first forms a groove and then a tube that drops below the surface to be later protected by bone and muscle

2. As the tube drops below the surface, skin closes over the tube

3. The tube begins to close first in the thoracic (chest) region and the closure spreads toward the head (to eventually form the brain) and towards the upper lumbar region

  • The lowest part of the spinal cord is formed by a different process called canalization and caudal regression during the 28-48th day of development

1. A group of ectodermal cells lying beneath the skin's surface at the primitive "tail" begins to break down in its centre to form a neural tube (canalization)

2. This tube then fuses with the neural tube formed by neurulation

3. This distal spinal cord degenerates to form the filum terminale

4. This process is less precise and therefore more liable to defects than neurulation. Failure of degeneration creates the entity of tight filum terminale

  • Beginning about the 45th day, a third process called regression occurs and extends into the first year of life

1. The lower neural tube then forms into the lowest part of the spinal cord (conus medullaris), the nerve roots that go to form the nerves to the legs (cauda equinae) and a fibrous cord from the conus medullaris (filum terminale)

2. By the process of regression and a greater growth of the bony spine than the spinal cord, the conus medullaris eventually ends up at the level of the second lumbar vertebrae.

Pathology

  • Any event which interferes with the development of the spinal cord and cauda equinae can lead to the ingrowth of other tissues like fat and skin, which creates an abnormal attachment, or tethering of the spinal cord

  • Tethering of the spinal cord interferes with the normal regression process causing damage to the spinal cord as it is stretched and placed under abnormal tension

  • The tension injures the spinal cord and may cause symptoms

  • Other entities can be associated with tethering including tumours, cysts, tracts and spinal cord malformations. There are several distinct entities forming a spectrum of diseases, some of which are listed below. The skin over the tether is intact and usually the surrounding bone of the spine is incomplete (spina bifida occulta). This is also called an occult spinal dysraphism (OSD)

  1. Dermal sinus: A tract lined by skin cells that leads from the skin to anywhere along the back of the spine

  2. Lipoma or lipomyelomeningocele: malformations in which a fatty tumour under the skin is fused to the back of the lower spinal cord

  3. Epidermoid or dermoid cyst: similar in formation to a dermal sinus, but a benign tumour is formed somewhere along the tract

  4. Diastematomyelia (split cord malformation): usually involves the upper portion of the cord. The spinal cord is split in two by a bony spur

  5. Tight filum terminale syndrome: a thickened filum over 2mm in diameter, a low lying conus medullaris and no other cause of tethering

  6. Neurenteric cyst: a cyst lined by tissue similar to the gut or airway. It has a connection to the spinal cord, vertebrae or both. The spinal tumour may connect via a stalk to the gut

  7. Myelocystocele: a complex malformation in which the end of the spinal cord is ballooned into a cyst and is associated with syringomyelia

  8. Syringomyelia: dilatation of the central portion of the spinal cord.

  9. Retether following myelomeningocele repair: after a SB repair, the spinal cord may become tethered by scarring to the area of repair

Tethered spinal cord

The embryonic spinal bones fuse together at different rates in a zip-like fashion proceeding in both directions. However, the bones at the caudal (tail) end form by coalescing in a disorganised way, and if the spinal cord becomes trapped in this area of rapidly amassing material, it becomes "tethered". Due to tethering, as the child grows there is no free movement of the cord and it is not able to ascend the spinal column. The lower part of the cord is therefore stretched and progressive neurological damage occurs as more tension is placed on the nerves emanating from the end of the cord. Blood circulation to the cord and the lower extremities may be reduced and in most cases the nerve impulses may be weak, distorted or absent.

Schneider et al (in Tethered Cord Syndrome, edited by Shokei Yamada, published by the American Association of Neurosurgeons Publications Committee, 1996) showed that blood flow was lowered during tethering but was significantly increased after detethering.

Neuronal (nerve) dysfunction due to tethering is subsequent to, firstly, metabolic derangement or hypoxia (the reduction of oxygen supply to tissues below physiological levels, despite adequate passage of blood through the tissue), and, secondly, the electrophysiology of the cord is impaired due to the distortion of neuronal membranes. Effectively, hypoxia means that the cord is deprived of oxygen and therefore electrical impulses are depressed. Physically this causes the nerves to reduce or stop sending impulses, both for sensory and motor functions, thereby creating and exacerbating progressive neurological deterioration.

At birth, there may be few external signs that the cord is tethered and as the spinal cord and its tissues are generally not fully exposed, there is rarely cause to operate immediately, except perhaps in the case of connecting dermal sinus tracts (skin-to-cord). A lipomyelomeningocele is most obviously visible as a skin-covered fatty mass in the lumbosacral region.

It used to be thought that most of the nerve stretching occurs at a time of rapid growth at puberty, but foot deformities and scoliosis can be apparent by the age of two as the cord stretching has effectively been going on since ~ 6 weeks post-conception. Once damaged, neurological function may not necessarily be recovered or improved. As indicated in the sections on spinal dysraphism, both children and adults can experience worsening symptoms of tethered spinal cords. In children the deterioration is caused by stretching of the cord with natural childhood growth. However in adults "without appropriate intervention most deteriorations in tethered cords are gradual, insidious over years. Rarely it can be very sudden, as can occur if one is put in the lithotomy position. Irreversability also occurs slowly and insidiously". [Ian Pople, 2002]. Also see this article by Shokei Yamada, which is very informative: "Pathophysiology of Tethered Cord Syndrome: Correlation with Symptomatology", Neurosurgical Focus, 16(2), 2004, Article 6

Adults with prior stable symptoms of a tethered cord can experience worsening of their symptoms due to general physical wear and tear on the cord and spinal nerves, and subsequent hypoxia and ischaemia of the spinal cord. These symptoms may be increased pain, decreased function, mobility and sensation, and further deformation of already poor feet. They may be fully accustomed to their condition, but any new symptoms that are out of the ordinary should be investigated by neurosurgical consultants who have a special interest in the area of spina bifida and spinal cord tethering. Surgery may be recommended in order to arrest further neurological damage and the deterioration of the function and sensation of the limbs, bladder and bowel.

In Journal of Neurosurgery, April 2001, 94(2 Suppl), the authors R. van Leeuwen, N.C. Notermans and W.P. Vandertop addressed the issue of "Surgery in Adults with Tethered Cord Syndrome: An Outcome Study with Independent Clinical Review". The abstract is below:

"Object: The authors conducted a study to evaluate the risks and short-term benefits of surgical treatment for tethered cord syndrome (TCS) in patients older than 18 years of age.

Methods: The authors studied a series of 57 consecutive adult patients with TCS of varying origins. Patients were examined by the same neurologist in a standard fashion before and after surgery, and most were followed for at least 2 years post-operatively. The patients' ages ranged from 19 to 75 years. The mean age at onset of symptoms and diagnosis was 30 years and 37 years respectively. Muscle strength improved (15 cases) or showed no change post-operatively (38 cases) in a large majority of patients (93%). In four patients a minor decrease in muscle strength was demonstrated, and there was a significant deterioration in two (3.5%). In the two latter patients a rapid decline in motor function was present pre-operatively. Subjective assessment of pain, gait, sensory function, and bladder/bowel function at 4 weeks, 6 months and 2 years post-surgery revealed improvement in a substantial percentage of patients. No major surgery-related complications occurred.

Conclusions: This is the largest series to date in which adult patients with TCS comprise the report. Untethering procedures in these patients were safe and effective, at least in the short term. Patients with rapid loss of motor function, lipomyelomeningocele, or split cord malformation seem to be at a higher risk of post-surgery deterioration. A follow-up period of many more years will be necessary to determine whether aggressive surgery is beneficial in the long term."

Click here for a very informative medical site on tethered cords. It includes images (not too gory!) and text describing symptoms and causes of tethered cords, and is easy to read and understand.

There are four main forms of tethered spinal cord in the spina bifida occulta range.

Tight filum terminale
Dermal Sinus Tracts
Diastematomyelia
Lipomyelomeningocele

Tight filum terminale (also known as fatty filum or thickened filum)

The following definition of the filum terminale is a wonderfully clear one, provided by a friend of mine, Nancy Van Luven, a member of http://www.tetheredcord.com/:

"The filum terminale is like a thin elastic band, about 8 inches long. At the top, it is formed from one of the layers of tissue surrounding your spinal cord, and extends from the bottom of your spinal cord to the tip of your tail bone. The outside of the "elastic band" has a few nerve fibres sticking to it.

The filum terminale works as an anchor for the spinal cord. For people with normal anatomy, the filum stretches when they bend over to allow the spinal cord to move up in the spinal column and then goes back to normal length when the person straightens up and gently pulls the spinal cord back to its normal position.

When the filum is fat-filled, fibrous and tight, it will not allow the spinal cord to move up and down within the spinal column, and so the spinal cord and the nerves end up being stretched instead of the filum. In most people this causes nerve damage".

Everybody has a filum terminale; it is a threadlike piece of tissue that connects the end of the spinal cord to the sacral end of the spinal canal in the pelvic area. In patients with a thickened filum (defined as more than 2 mm in diameter) [Yundt, 1997], the filum is shorter or lower-lying than normal and is thickened with fatty or fibrous tissue. This abnormality causes the filum to become relatively inelastic (a bit like a rope or cord, rather than an elastic band) and the spinal cord becomes tethered at an abnormally low level, thereby giving rise to the recognised signs and symptoms of a tethered spinal cord.

The usual cutaneous marker in 50% of patients is a deep, skin-covered dimple (closed dermal sinus tract) in the spinal midline, very low down on the back around the coccyx area. However thickened filums "may not always be attached to a sinus" [Ian Pople, 2002] and therefore any changes in the development of an apparently normal child's feet, legs, back, bladder and bowel control should be investigated for an underlying thickened filum. The earlier a diagnosis is made may possibly prevent further irreversible neurological damage. "However, it is inevitable that in most children some deformity occurs even after an early detethering, except in those cases with purely a thickened filum presenting with pain, where the neurological outcome is generally better [Ian Pople, 2004].

A diagnosis of a deterioration in the condition of a spinal cord due to a thickened filum terminale is usually made after an MRI (3D scan) as well as taking account of painful physical symptoms. The symptoms of deterioration can include any of the following:

  • progressive scoliosis

  • muscle stiffness, weakness, or atrophy

  • intermittent on-again-off-again pain in the back of one or both legs and in the lower back

  • abnormal lower extremity reflexes (such as absent ankle jerks)

  • bladder problems

  • increased abnormal sensations in the feet (numbness, tingling, pins and needles, "burning" sensations)

  • the "classic feet and legs" (pes cavus, high arches, claw toes, and tiny toenails)

  • gradual tightening of already deformed feet

  • sensory loss in a root distribution

  • pain in a radicular distribution, elicited by a straight leg raising test which places further traction on the cord.

The operation to release the thickened filum is the simplest and least risky of untethering procedures as the filum has no neurological function and the surgery hold a 1-2% risk of causing neurological deterioration or damage. It involves a laminectomy at one or two levels in the lumbar or sacral spine to expose the site of the tether, and a division of the tight filum is made. The patient usually has to lie flat in hospital for about five days to prevent CSF leakage or damage to the incision site. S/he can take graduated gentle exercise as the wound heals and physical strength returns. The sciatica-like leg pain and severe spinal pain, characteristic of this type of tethered cord, usually reduces or disappears in most patients. Some of the post-operative pain can be attributed to being "a feature of released sensory tissue beginning to work after many years of being shut off by the tethering" [Ian Pople, 2002], and some patients continue to suffer chronic pain, varying in types and levels of intensity.

The success of the surgery can be measured when the cord can move in a normal manner, as the tension on it will have been released. A successful detethering will also halt further deterioration of the nerves affecting the lower extremities and of the bladder and bowel. Prior to surgery, the nerves of the cauda equina are stretched vertically like an elastic band. After a successful detethering these nerves are relaxed and lie, as they should do, at right angles to the filum and spinal cord.

I had this type of tethered cord, and I have undergone detethering surgery. Please go to my home page to follow my experiences and progress

Retethering

"A patient with a simple tight terminal filum usually experiences an uneventful postoperative course, and there is little chance of retethering" (M.R. Proctor and R.M. Scott, "Long Term Outcome for Patients with Split Cord Malformation", Neurosurgery Focus, 10(1), Article 5, 2000. Two other articles were particularly informative about retethering of spinal cords post-surgery.

Souweidane, M.M. and J.M. Drake, "Retethering of Sectioned Fibrolipomatous Filum Terminales: Report of Two Cases", Neurosurgery, 42(6) (June 1998): 1390[-]93.

"Objective and Importance: The release of a tethered spinal cord by sectioning a thickened filum terminale is a straightforward surgical procedure that can prevent, arrest, or ameliorate neurological deficits. We recently recognized progressive neurological deterioration cause by filum retethering in two patients years after this procedure was performed. This sequela of a recurrent tethered cord after the sectioning of a filum terminale has not previously been described.

Clinical Presentation: Two female patients, each 13 years of age at presentation, had been previously operated on for tethered spinal cords secondary to fibrolipomatous (fatty) fila terminale. Both presented with bladder dysfunction and one with progressive paraparesis. MRIs revealed a low-lying conus medullaris and a sectioned filum with the proximal stump adherent to the posterior dura.

Intervention: Each patient underwent neurosurgical exploration of the previous site of sectioning, with the recognition of the retethered proximal stump of the filum terminale. After re-release of the fatty filum, the patient with only bladder dysfunction stabilized and a motor examination revealed normal results for the patient with progressive paraparesis.

Conclusion: Retethering of the spinal cord is a rare sequela (consequence of) [after] the sectioning of a tight filum terminale. The clinical presentation is typical for recurrent cord tethering and the radiographic findings are subtle. Careful surgical exploration should be offered for spinal cord untethering. Awareness of this rare and hitherto undescribed sequela is necessary for appropriate long-term management of tethered spinal cords cause by fatty filum terminale."

Phuong, L.K., K.A. Schoeberl, and C. Raffel, "Natural History of Tethered Cord in Patients with Meningomyelocele", Neurosurgery, 50 (2002): 989[-]995

"Objective: The purpose of this study was to describe the natural history of tethered cord in patients who have undergone meningomyelocele repair.

Methods: We performed a retrospective review of 45 patients with a history of neonatal meningomyelocele repair who consequently developed symptoms of tethered cord. Symptoms of tethered cord in this cohort consisted of the development of bladder spasticity or orthopedic foot deformity. None of these patients were treated with cord untethering; instead they were treated symptomatically.

Results: On follow-up, 40 (88.9%) of these patients subsequently required additional orthopedic or urological procedures because of further symptoms of tethered cord. The incidence of progression of tethered cord syndrome is 27.5, 40, and 60% at 1, 2, and 5 years respectively.

Conclusion: Although this study does not address the question whether cord untethering will prevent further symptom development, these results do provide a strong rationale for consideration of an untethering procedure in patients with repaired meningomyelocele at the time of the onset of symptoms of tethered cord."

In another study, it was noted that "~10-16% of children with spina bifida are at risk of a secondary tethering where 87% of these are diagnosed by neuro-urological surveillance, and a further 4 out of 191 children were diagnosed with a secondary rethering because they developed a peripheral neurological deterioration in the lower extremities as detected by routine neurological examination" (Ilker, Y. et al) (see Information Pages)

At present there appears to be no guaranteed way to prevent retethering, although various methods are being used. Aliredjo et al [1999] support the use of a Gore-Tex membrane to prevent adhesions after cord detethering but other surgeons are experimenting with an anti-adhesion gel .

The risk of retethering can vary according to the patient's age, the type, and the severity of the entire condition. In children the risk of cord retethering is approximately 20% "because the spinal canal in the baby is shallow and therefore postoperatively the neural contents are in direct contact with the posterior dura (back covering of the spinal cord) [Zide et al., 1995]. In adults who have been detethered, there may be a ~5-10% risk of the cord retethering.

Journal and research paper extracts

Below are some extracts of research papers from journals, relating to thickened filum terminale.

"The best results [of a cord detethering surgery] were obtained in patients in whom the cord tethering resulted from an anomalous filum terminale. Results were significantly worse in patients suffering long standing symptomology and showing surgically mixed mechanisms of cord tethering" [Guyotat et al., 1998].

"The most common tethering lesions [in adults exhibiting symptoms of a tethered cord] were intradural lipoma and a short thickened filum terminale ... the surgical outcome was gratifying in relation to pain and sensory-motor deficits but disappointing in the resolution of sphincter disorders" [Caruso et al, 1996].

In studies of patients with "tight filum terminale, split cord malformation and lipomyelomeningocele ... long term surgical improvement was reported ... 79% called the operation a long-term success; 75% believed they had significant postoperative improvement (and not just stabilization) in pain and/or neurological function" [Iskandar et al., 1998].

"The patients presenting with low back pain and sciatica responded to surgery better than those with sphincter problems" [Akay et al., 2000].

Urological aspects of tethered cords

"Adults with the tethered cord syndrome are less likely to have urodynamic or bladder function improvement after cord release and most often present with irreversible findings which rarely become worse after surgery. These patients need to have careful and continuous follow-up, including urodynamic studies, due to possible re-tethering with time" [Giddens et al., 1999].

In a group of patients with primary cord tethering "the most common preoperative urodynamic finding was hyperreflexia, which improved or resolved after untethering in 62.5% of the patients. Four adults also reported improved bladder sensation or decreased urgency". In a second group of patients who had undergone a second detethering surgery "only 14% had improved symptoms of urinary control but 28% had improved lower extremity function". The conclusion was that "urological symptoms and urodynamic patterns may be improved by early surgical intervention in patients with occult spinal dysraphism. However, untethering did not consistently benefit patients with secondary spinal cord tethering" [Fone et al., 1997].

In children with lower urinary tract dysfunctions "significant improvements can be achieved with a judiciously timed division of the tethered spinal cord" [Balkan et al., 2001].

"Changes in bladder-sphincter function after untethering are usually transient and often the result of partial denervation [mostly in patients with myelomeningocele and lipomyelomeningocele] ... however the individual outcome cannot be predicted [Boemers et al., 1995].

Dermal sinus tract

This condition manifests itself as a small skin-lined tube (a fistula) found along the midline of the back, usually in the lumbar or sacral part of the spine, which extends through two (possibly damaged) laminae, through spinal cord coverings, and deep into the end of the spinal canal. The dermal sinus is usually attached to the spinal cord, thus causing tethering of the cord. It is caused when the neural tube fails to separate fully from the overlying ectoderm during weeks 3-5 of pregnancy. See Yamada (pp. 6-20) for detailed explanations of these processes.

Cutaneous markers may be any of the following:

  • collections of blood vessels just under the skin

  • abnormally placed tufts of hair

  • deep skin dimples

  • skin discoloration around a variously-sized skin opening

  • on examination, the existence of a fistula.

Surgery to correct this condition is generally required, due to the risk of spinal cord abscesses, the entry of bacteria through the tract with the increased risk of meningitis and the potential damage due to the tethering of the spinal cord. The surgery generally involves removing any portions of the sinus tract that connect with the spinal cord and covering the tract to reduce infection.

Diastematomyelia (also called split cord malformation).

This type of tethered cord occurs when the spinal cord is split in two longitudinally by a spur of bone or cartilage and is formed at approximately days 16/17 post-conception. Each half usually possesses its own dorsal and ventral nerve roots and is enclosed within its own dural sheath (cord covering). The two cords may reunite above and below the dividing structure. Diastematomyelia may be associated with bone abnormalities such as split or fused vertebrae, may also be seen with a short filum terminale, a tumour, or the tethering of nerve roots around the diastematomyelia. It is commonly located at the lower thoracic or upper lumbar areas of the back. It acts as a tethering process as it slows the normal growth of the spinal cord by preventing the upward migration of the cord.

Cutaneous features may include any of the following, depending on the level of tethering and the inclusion of other tethering factors:

  • Hypertrichosis, which is a patch of long silky hairs with a triangular outline, peculiar to 50-70% of cases of this condition

  • Dimples, dermal sinus tracts, nevi (collections of blood vessels), lipomae under the skin

  • Progressive back or leg pain and weakness, pes cavus foot deformity, scoliosis

  • Neurological changes such as weakness, atrophy of muscles, gait changes, sensory changes or loss in legs and feet, and bowel and bladder disturbances

Some cases of diastematomyelia are initially asymptomatic and require careful monitoring. However, in many cases neurological deterioration occurs and therefore surgery is indicated. The standard surgery, which is described by Proctor and Scott is "the removal of the fibrous or bone septum, resection of any other local spinal cord attachments causing tethering, and exploration for associated tethering-related anomalies such as dorsal tethering bands or thick filum, which can be seen in the majority of SCM patients. Following the detethering procedure, the dura was closed posteriorly with or without placement of a patch graft ... the patients were kept flat postoperatively for an average period of 72 hours, and were then allowed to progressively advance to full activity levels". This releases the tethering of the cord and modest neurological improvement is reported.

Lipomyelomeningocele

This is the most severe form of tethered cord that is covered by skin, and accounts for 84% of occult spinal cord malformations. Adipose tissue collects in a defect of the spinal column, and the spinal cord, functioning nerve roots, conus and filum terminale become embedded in this pad of fat thereby tethering the spinal cord. This situation can compress the cord leading to possibly irreversible neurological damage and deterioration.

The cutaneous marker is obvious upon examination in the form of a non-symptomatic lump under the unbroken skin. The placement of this lipoma is usually in the lumbosacral region of the back.

Clinical features secondary to the lipoma may include

  • motor and sensory deficits

  • reflex changes

  • gait and stance abnormalities

  • bowel and bladder problems

  • musculo-skeletal problems.

These symptoms can cause progressive problems in adulthood after a possibly relatively symptom-free childhood, and surgery is usually required to prevent further neurological deterioration.

The operation to correct this condition consists of removing the fatty lipoma and thus detethering the spinal cord and its nerves. Some literature (found at http://nyneurosurgery.org/) indicates that surgeons detether this type of cord by using a laser to vaporise the water content in the fat, thus "melting" the lipoma and enabling its removal without injury to the neural structures around it.

One journal paper was very informative - "Recurrent Tethering: A Common Long-Term Problem after Lipomyelomeningocele Repair", by A. Colak, I.F. Pollack, and A.L. Albright, Pediatric Neurosurgery, 29(4): October 1998.

They wanted to "determine the incidence and time course of symptomatic retethering in a control group of 94 patients ... 20% of patients (19 people) reviewed required 28 subsequent operations for retethering. The median time between the initial procedure and reoperation for retethering was 52 months. The primary complaint of 12 patients was intractable low-back or leg pain, ... progressive bowel and/or bladder dysfunction, deterioration of motor function and foot deformities ... people with lipomas had a higher frequency of retethering rather than those with dorsal lesions ... none of a variety of types of dural graft materials appeared to entirely prevent retethering. Following reoperation pain complaints resolved and many of the other symptoms improved partially or resolved completely".

The researchers concluded that "symptomatic retethering is a common problem in children with lipomyelomeningoceles even after an adequate initial operation. To date, no type of graft material has been shown to entirely prevent this problem".

Before surgical techniques were developed to detether lipomyelomeningoceles safely and effectively, patients with the condition often experienced considerable difficulties as both children and older adults. The following story illustrates how the condition can progress without childhood surgery. It also shows that lipomyelomeningocele can be improved by surgery, but that there is a greater risk that detethering surgery may have to be experienced more than once.

"In 1945 when I was born, little was known about spina bifida and tethered cord had never been heard of. There were also no shunts to prevent hydrocephalus. Surgeons simply closed the back and hoped for the best. My parents were told I was best left alone, as my back was covered by normal skin and I did learn to walk after a fashion. I grew up dealing with lack of enervation to my calf muscles, no sensation in the buttocks area and down the back of my legs, and increasingly deformed feet with hammer toes. I had no sensation to tell me my bladder was full, and I learned to use abdominal muscles to control both bladder and bowel. I fell often and couldn't run, even burned the back of my leg sitting on a hot radiator. I wore corrective shoes which I did under protest and usually worked out how best to do something. If I fell or was hit on the lipoma I had tingling down my legs and more trouble walking.

By the time I was 40-ish I began to have severe pains in my hip and knees, but I was not referred to a neurologist as my doctor thought I had arthritis due to my compensated gait. After losing all bladder control I demanded a referral to a neuro-specialist and I finally found out about my condition. The MRI showed that the lipoma clearly entered the spinal column at L4, L5 and S1 and these vertebrae had no back to them at all. The lipoma was firmly attached to the end of the spinal cord.

Surgery to detether the cord took place when I was 52 and most of the lipoma was removed. My pain was instantly better. The following year, however, the symptoms gradually returned and now I have to use a wheelchair or motorised scooter to get around. My feet are also continuing to contract and so I may be facing a second detethering surgery to stabilise the condition."

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* Urodynamics

Urodynamics refers to a group of procedures that are performed to examine voiding (urinating) disorders. The goal of the diagnosis and treatment of these disorders is to both protect the kidneys and keep the patient dry. Any procedure designed to provide information about a bladder problem can be called a urodynamic test. The type of test you take depends on your problem.

Most urodynamic testing focuses on the bladder's ability to empty steadily and completely. It also can show whether or not the bladder is having abnormal contractions, which cause leakage. Your doctor will want to know whether you have difficulty starting a urine stream, how hard you have to strain to maintain it, whether the stream is interrupted, and whether any urine is left in your bladder when you are done. The urodynamic test is a precise measurement using sophisticated instruments.

Before the Test

You will need to take the antibiotic that has been provided. You will need to have a urine culture to make sure you do not have a urinary tract infection.

The test includes:

Uroflowmetry

A uroflowmeter automatically measures the amount of urine and the flow rate (how fast the urine comes out). This creates a graph that shows changes in flow rate from second to second so the doctor or nurse can see the peak flow rate and how many seconds it took to get there. This test will be abnormal if the bladder muscle is weak or urine flow is obstructed.

The volume of urine is divided by the time to see what your average flow rate is. For example, 330 ml of urine in 30 seconds mean that your average flow rate is 11 ml per second.

Postvoid residual

After you've finished urinating, you may still have some urine, usually only an ounce or two, remaining in your bladder. To measure this urine, called a post-void residual, the nurse may insert a catheter into your bladder, drain the urine and measure it. A post-void residual of more than 200 ml (about half a pint) is a clear sign of a problem. Even 100 ml, about half a cup, may require further testing.

Cystometry (cystometrogram - CMG)

A cystometrogram (CMG) measures how much your bladder can hold, how much pressure builds up inside your bladder as it stores urine, and how full it is when you feel the urge to urinate. The nurse will use a catheter to empty your bladder completely. Then a special smaller catheter with a pressure-measuring tube called a cystometer will be used to fill your bladder slowly with normal saline. Another catheter will be placed in the rectum to record pressure there as well. You will be asked how your bladder feels and when you feel the need to urinate. The volume of water and the bladder pressure will be recorded. You will be asked to cough or strain during this procedure. Involuntary bladder contractions can be identified.

Measurement of leak point pressure

While your bladder is being filled for the CMG, it suddenly may contract and squeeze some water out without warning. The cystometer will record the pressure at the time of the leak. This reading tells the doctor about the kind of bladder problem you have. You also may be asked to exhale while holding your nose and mouth closed to apply abdominal pressure to the bladder, or cough or shift positions. These actions help the doctor or nurse evaluate your sphincter muscles.

Pressure flow study

After the CMG, you will be asked to empty your bladder so that the catheter can measure the pressures required to urinate. This pressure flow study helps to identify bladder outlet obstruction that men may experience with prostate problems. Bladder outlet obstruction is less common in women but can occur with a fallen bladder or rarely after a surgical procedure for urinary incontinence. Some catheters can be used for both CMG and pressure flow studies.

Electromyography (measurement of nerve impulses)

During the urodynamics test, an electromyograph will be performed to measure nerve impulses. This test measures the muscle activity in the urethral sphincter using sensors placed on the skin near the urethra and rectum. Sometimes the sensors are on the urethral or rectal catheter. Muscle activity is recorded on a machine. The patterns of these impulses will show whether the messages sent to the bladder and urethra are coordinated correctly.

Afterward

You might have mild discomfort for a few hours after these tests. Drinking two 8-ounce glasses of water each hour for 2 hours should help. Ask your doctor whether or not you can take a warm bath. If not, you may be able to hold a warm, damp washcloth over the urethral opening to relieve the discomfort.

Your doctor may give you an antibiotic to take for 1 to 2 days to prevent an infection. If you have signs of infection, fever, chills or pain, call your doctor.

Results

For some of the more simple tests, you may get answers as the test is being done or right after it's done. For others, it will take a few days. Your doctor will contact you with the answers.

Courtesy of National Kidney and Urologic Diseases Information Clearinghouse

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* What Happens In Human Spinal Cord Injuries?

Although the spinal cord is protected by the bony vertebrae of the spinal column, it can still be injured ...with disastrous consequences. According to statistics gathered in 1996 by the National Institutes of Health, more than 10,000 Americans experience spinal cord injuries each year and more than 200,000 are living with permanent paralysis in their arms or legs.

People with spinal cord injuries can also lose sensation and -- depending where along the spinal cord the injury occurs -- control over critical body functions, including the ability to breathe. And because two-thirds of spinal cord injuries occur in people who are 30 years old or younger, the resulting disabilities can affect their entire adult lives.

Usually, injuries to the spinal cord injuries do not result in a cut through the cord; instead, they crush the thin, fibrous extensions of nerve cells that are surrounded by the vertebrae. These extensions are called axons, the long, thin strings of nerve cell cytoplasm that carry electrical signals up and down the spinal cord. The axons of nerve cells with similar functions run in groups or pathways. Some carry sensory information upward to the brain; others run downward from the brain to control the body's movements. An injury to the spinal cord can damage a few or many of these pathways. Nevertheless, a person can often recover some functions that were lost because of the initial injury.

The damage that occurs to spinal cord axons within the first few hours after injury is complex and it occurs in stages. The normal blood flow is disrupted, which causes oxygen deprivation to some of the tissues of the spinal cord. Bleeding into the injured area leads to swelling, which can further compress and damage spinal cord axons. The chemical environment becomes destructive, due primarily to the release of highly reactive molecules known as free radicals. These negatively charged ions can break up cell membranes, thus killing cells that were not injured initially. Blood cells called macrophages that invade the site of injury to clean up debris may also damage uninjured tissue. Non-neuronal cells including astrocytes may divide too often, forming a scar that impedes the regrowth of injured nerve cell axons.
 

Micrograph of the spinal cord of an adult rat. As in the human patient, a central cavern (dark) replaces the damaged tissue. A group of descending fibers (white matter) that normally control voluntary movement -- called the corticospinal tract -- ends at the wall of the cavern, indicating that the cavern and its associated scar tissue act as a barrier to regeneration.

A magnetic resonance image (MRI) of the cervical spinal cord of a paraplegic patient showing a cavern (dark area) that has formed at the site of injury. The spinal cord is crushed, not severed, as seen by the continuity of the white matter.

The early events that follow a spinal cord injury can lead to other kinds of damage later on. Within weeks or months, cysts often form at the site of injury and fill with cerebrospinal fluid, the clear, watery fluid that surrounds the brain and spinal cord. Typically, scar tissue develops around the cysts, creating permanent cavities that can elongate and further damage nerve cells. Also, nerve cell axons that were not damaged initially often lose their myelin, a white, fatty sheath that normally surrounds groups of axons and enhances the speed of nerve impulses.

Over time, these and other events can contribute to more tissue degeneration and a greater loss of function. Scientists are trying to understand how this complex series of disruptive events occurs so they can find ways to prevent and treat it. They are also trying to identify treatments that will enhance some of the normal -- but often limited -- kinds of recovery that can occur after a spinal cord injury.

Another complication in spinal cord injury stems from the variety of nerve fibers and cell types that make up the tissue. In the spinal cord, axons run in bundles or pathways up and down the cord. The downward or descending pathways from the brain to the spinal cord carry nerve signals that control voluntary movements. The upward or ascending pathways carry sensory information -- about touch, temperature, pain, and body position -- from the entire body to the brain. Researchers believe that the ascending and descending pathways, as well as different groups of nerve cells (also called neurons) that lie entirely within the spinal cord, may require individualized treatments to regenerate and regain their functions.

"Do the descending motor pathways from the brain into the spinal cord need the same things [for recovery] as sensory fibers that go from the spinal cord to the brain?" asks Barbara Bregman, a neuroscientist in the department of anatomy and cell biology at Georgetown University in Washington, D.C. "It is important to know what the cells need and when they need it."

For example, if scientists are going to be able to devise ways to repair damaged spinal cord tissue, they may need to use special combinations of nourishing proteins -- called neurotrophic factors -- to help damaged axons to regrow and regain some function. The damaged cells may also require a specific environment in which to recover. So researchers study the chemical composition of the non-cellular material -- the extracellular matrix -- that surrounds healthy neurons in the spinal cord and in the peripheral nervous system that serves the rest of the body. Additionally, damaged spinal cord neurons may require the presence -- or even the absence -- of different kinds of non-neuronal cells for regrowth and functional recovery.

Although scientists are beginning to understand the cellular and molecular events that occur after spinal cord injury, one question continues to dominate the research: Why don't the brain and spinal cord repair themselves?

Additional reading:

1. M. E. Schwab and D. Bartholdi. "Degeneration and regeneration of axons in the lesioned spinal cord." Physiol. Rev. 76 (2): 319-370 (1996).

2. M.E. Schwab. "Bridging the gap in spinal cord regeneration." Nature Med. 2 (9): 976-977. 1996.

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* What is an Epidural Steroid Injection?

Epidural Steroid Injection is an injection of long lasting steroid (cortisone) in the Epidural space - that is the area surrounding the spinal cord and the nerves coming out of it.

What is the purpose of it?

The steroid injected reduces the inflammation and/or swelling of nerves in the Epidural space. This may in turn reduce pain, tingling & numbness and other symptoms caused by nerve inflammation / irritation or swelling.

How long does the injection take?

The actual injection takes only a few minutes.

What is actually injected?

The injection consists of a mixture of local anesthetic (like lidocaine or bupivacaine) and the steroid medication (triamcinolone - Aristocort® or methylprednisolone - Depo-medrol®, Celestone-Soluspan).

Will the injection hurt?

The procedure involves inserting a needle through skin and deeper tissues (like a "tetanus shot"). So, there is some discomfort involved. However, we numb the skin and deeper tissues with a local anesthetic using a very thin needle prior to inserting the Epidural needle. Also, the tissues in the midline have less nerve supply, so usually you feel strong pressure and not much pain. Most of the patients also receive intravenous sedation and analgesia, which makes the procedure easy to tolerate.

Will I be "put out" for this procedure?

No. This procedure is done under local anesthesia. Most of the patients also receive intravenous sedation and analgesia, which makes the procedure easy to tolerate. The amount of sedation given generally depends upon the patient tolerance.

How is the injection performed?

It is done either with the patient sitting up or on the side, or on your stomach. The patients are monitored with EKG, blood pressure cuff and blood oxygen monitoring device. The skin in the back is cleaned with antiseptic solution and then the injection is carried out. After the injection, you are placed on your back or on your side.

What should I expect after the injection?

Immediately after the injection, you may feel your legs slightly heavy and may be numb. Also, you may notice that your pain may be gone or quite less. This is due to the local anesthetic injected. This will last only for a few hours. Your pain will return and you may have a "sore back" for a day or two. This is due to the mechanical process of needle insertion as well as initial irritation form the steroid itself. You should start noticing pain relief starting the 3rd day or so.

What should I do after the procedure?

You should have a ride home. We advise the patients to take it easy for a day or so after the procedure. Perform the activities as tolerated by you.

Can I go back to work the next day?

You should be able to unless the procedure was complicated. Usually you will feel some back pain or have a "sore back" only.

How long does the effect of the medication last?

The immediate effect is usually from the local anesthetic injected. This wears off in a few hours. The cortisone starts working in about 3 to 5 days and its effect can last for several days to a few months.

How many injections do I need to have?

If the first injection does not relieve your symptoms in about a week to two weeks, you may be recommended to have one more injection. Similarly If the second injection does not relieve your symptoms in about a week to two weeks, you may be recommended to have a third injection.

Can I have more than three injections?

In a six month period, we generally do not perform more than three injections. This is because the medication injected lasts for about six months. If three injections have not helped you much, it is very unlikely that you will get nay further benefit from more injections. Also, giving more injections will increase the likelihood of side effects from cortisone.

Will the Epidural Steroid Injection help me?

It is very difficult to predict if the injection will indeed help you or not. Generally speaking, the patients who have "radicular symptoms" (like sciatica) respond better to the injections than the patients who have only back pain. Similarly, the patients with a recent onset of pain may respond much better than the ones with a long standing pain. Also, the patients with back pain mainly due to bony abnormality may not respond adequately.

What are the risks and side effects?

Generally speaking, this procedure is safe. However, with any procedure there are risks, side effects, and possibility of complications. The most common side effect is pain - which is temporary. The other risk involve spinal puncture with headaches, infection, bleeding inside the Epidural space with nerve damage, worsening of symptoms etc. The other risks are related to the side effects of cortisone: These include weight gain, increase in blood sugar (mainly in diabetics), water retention, suppression of body's own natural production of cortisone etc.

Who should not have this injection?

If you are allergic to any of the medications to be injected, if you are on a blood thinning medication (e.g. Coumadin, Plavix), or if you have an active infection going on, you should not have the injection.

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* What is a Myelogram?

A myelogram is a special x-ray examination to study your spinal canal, spinal cord and the area surrounding it called the subarachnoid space. The procedure involves the injection of contrast material or dye into your spinal canal. This contrast material is an iodinated contrast medium similar to what is injected for a study of the kidneys called an intravenous pyelogram (IVP), and is often injected for CT scans, cardiac catheterizations and angiograms for enhanced visualization.

Note: If you have had a previous allergic reaction to iodinated contrast material, please notify your physician so that the proper steroid preparation can be ordered before your scheduled myelogram.

A myelogram can identify abnormalities of the spinal cord, the spinal canal within which it sits, and the spinal nerve roots connected to it. Myelography is often performed when other exams such as computerized tomography (CT) scans or magnetic resonance imaging (MRI) have not provided enough information for an accurate diagnosis to be made.

How Do I Prepare for a Myelogram?

No food should be eaten two (2) hours prior to your myelogram, but fluids are permitted.

Please let your physicians know about any allergies to food or medications in advance. Also, please notify your physician if you are taking any blood thinning medications such as:

  • Aspirin

  • Coumadin

  • Heparin

  • Plavix

  • Lovenox

In most cases, such medications will need to be discontinued for a period of time before your procedure according to your physician's instructions.

If you are taking any major tranquilizers, please inform your physician, as some of them may need to be discontinued two days prior to the procedure and restarted one day after the procedure.

Although myelograms are performed on an outpatient basis, we ask that you do NOT drive yourself to the Clinic on the day of your myelogram appointment. Arrangements must be made for someone to drive you TO and FROM your myelogram appointment. Your procedure may be canceled if transportation arrangements are not made in advance.

If you have had MRI or CT films of the spine at another facility, please bring them with you on the day of the myelogram procedure.

What Can I Expect During the Procedure?

When you arrive in the Diagnostic Radiology Department you will be asked to change into a hospital gown, with the opening at the back. At this time you should urinate so you will be comfortable during your myelographic study. Please notify the technologist if you have a history of allergies or seizure disorder. Women in their childbearing years will also be asked about the possibility of pregnancy. If there is any possibility that you may be pregnant, please inform your doctor or the technologist prior to the examination. If you have a fever, call first as it may be necessary to postpone the procedure.

When the examination begins, you will likely be positioned face down on a special x-ray table for the myelographic procedure. This table will be tilted up or down as necessary during the procedure. At different times during the procedure you may be asked to lie on your side or back as well.

Depending on the area to be studied, either your back or neck will be washed with a soapy iodine solution. That area will then be covered by a sterile drape. After injecting a numbing medication (xylocaine) into your neck or back, the radiologist will place a needle into your spinal canal using x-ray guidance, inject the contrast material, and take a series of X-rays of the area in question.

The myelogram procedure takes approximately thirty to sixty minutes to complete, but you can expect to remain in the recovery area for a period of time after your study is finished.

What Can I Expect After my Procedure?

When your myelographic study is complete you will be put on a stretcher in either a semi-upright or flat position. Usually a CT scan will be performed after the myelogram. You will be sent to a recovery area for approximately two (2) hours where a nurse will monitor your progress. You may get up to use the bathroom, but otherwise you should stay in bed and remain on your back for the full two (2) hours. You will be given something to eat and encouraged to drink fluids. Drinking fluids helps eliminate the possibility of side effects, such as headaches, nausea and vomiting. If a headache, backache, or nausea should occur while you are in the recovery area, let the nurse know immediately. Medications are available to help make you more comfortable
 
Two-Needle Technique for the Treatment of Symptomatic Tarlov Cysts
  J Vasc Interv Radiol 2008

Kieran Murphy, MD, FRCRPC, Gerald Wyse, MB, BAO, Bch, Philippe Gailloud, MD, Graeme F. Woodworth, MD, Daniel M. Sciubba, MD, Mayumi Oka, MD, A. Daniel Sasson, MD, and Donlin Long, MD 

  MENINGEAL or perineural (Tarlov) cysts are meningeal dilations of the posterior spinal nerve root sheath most commonly seen at the sacral level (1). Tarlov cysts can cause progressive radiculopathy, pelvic pain, sphincter dysfunction, and buttock and lower extremity pain. They are most commonly diagnosed with lumbosacral magnetic resonance (MR) imaging and can often be demonstrated at computed tomographic (CT) myelography to communicate with the spinal subarachnoid space. These cysts may be large and expand the spinal canal, 
sometimes causing erosion of the overlying bone. Numerous treatment approaches for symptomatic Tarlov cyst have been described, including surgical cyst fenestration, partial cyst wall resection, and myofascial flap repair and closure (2–11). More recently, a less invasive, percutaneous approach with a single needle aspiration technique has been reported (5,7). In general, this procedure consists of three stages: (a) cyst entry and aspiration, (b) contrast medium injection to ensure there is no wide connection between the cyst and thecal sac, and (c) tissue adhesive injection. 
We have treated numerous patients with a single-needle aspiration technique. A substantial limitation of this approach is the severe intraprocedural pain that develops during aspiration, which is thought to be related to negative pressure retraction on the dura. We therefore developed a two needle technique in which one needle is positioned at the apex of the cyst and a second one is positioned in its lowest portion to allow equilibration of pressure within the cyst during aspiration and obliteration. 
 

  • BIBLIOGRAPHY

    Acosta, Frank L. Jr., M.D. , Quinones-Hinojosa, Alfredo, M.D., Schmidt, Meic H., M.D., and Weinstein, M.D. Diagnosis and Management of Sacral Tarlov cysts: Case Report and Review of the Literature, Department of Neurological Surgery, University of California, San Francisco, California and University of Utah Medical Center, Salt Lake City, Utah, Neurosurgery Focus 15 (2): Article 15, 2003

    ArunKumar MJ, Selvapandian S, Chandy MJ. Sacral nerve root cysts : A review on pathophysiology. Neurol India [serial online] 1999 [cited 2006 Oct 5];47:61-4. Available from: http://www.neurologyindia.com/article.asp?issn=0028-3886;year=1999;volume=47;issue=1;spage=61;epage=4;aulast=ArunKumar

    Mummaneni, P. V, Pitts, L. H., McCormack, B. M., Corroo, J. M., Weinstein,

    P. R, Department of Neurological Surgery, University of California, San Francisco, School of Medicine, Microsurgical Treatment of Symptomatic Sacral Tarlov Cysts. Neurosurgery 2000 July: 47 (1):74-78 (ISSN:0148-396X)

    Patel M.R.,  Rachlin, Louie W., Department of Radiology, Beth Israel Hospital,Harvard Medical School, Boston, MA,  Percutaneous Fibrin Glue Therapy of Meningeal Cysts of the Sacral Spine, American Journal of Roentgenology AJR, 1997, Feb;168 (2): 367-70

    Voyadzis, J.M., Bhargava, P, Henderson Fraser C., Department of Neurosurgery and Pathology, Georgetown University Medical Center, Washington, D.C., Tarlov cysts: A Study of 10 Cases with Review of the Literature. Journal of Neurosurgery 2001 July, 95 (1 Suppl.): 25-32 (ISSN:0022-3085

  • COMMUNITY SERVICES

    In 41 states, District of Columbia, and Puerto Rico there is a service that provides individuals in need with a shortcut through what might be an otherwise bewildering maze of health and human service agencies. By simply dialing 211, those in need of assistance are connected to appropriate agencies and community organization’s services. To learn if 211 services are available in your community and to obtain more information, visit http://www.211.org/

    211 services work a bit like 911. Calls to 211 are routed by the local telephone company to a local or regional calling center. The center’s referral specialist questions callers, and accesses databases of resources available from private and public health and human service agencies and links the caller to an organization that can help.

    Types of Referrals Offered by 211

    • Basic Human Needs Resources - including food and clothing banks, shelters, rent assistance, and utility assistance. 

    • Physical and Mental Health Resources - including health insurance programs, Medicaid and Medicare, maternal health resources, health insurance programs for children, medical information lines, crisis intervention services, support groups, counseling, and drug and alcohol intervention and rehabilitation.

    • Work Support - including financial assistance, job training, transportation assistance and education programs. 

    • Support for Older Americans and Persons with Disabilities - including adult day care, community meals, respite care, home health care, transportation, and homemaker services. 

    • Children, Youth, and Family Support - including child care, after school programs, educational programs for low-income families, family resource centers, summer camps and recreation programs, mentoring, tutoring, and protective services.

    The 211 referral services or other resources in your community might be able to make referrals to agencies which provide help with such needs as:

    • Pro Bono services by local attorneys

    • Assistance with medication payments

    • Local pain management centers

    • Mental health resources and local support groups

    • Assistance with computer resources

    • Local transportation services for doctor appointments and hospital visits

    • Assistance with grocery shopping or grocery deliveries

    • Assistance with medical equipment such as canes, walkers, wheelchairs, cushions

    This site provides information from the U.S. Department of Justice on the Americans with Disabilities Act.  http://www.usdoj.gov/crt/ada/adahom1.htm

    If you are filing for Social Security Disability, this website will provide instructions for the process.  http://www.ssa.gov/

    Since there are frequently no experts in the treatment of Tarlov cysts in your area, you may be required to travel long distances to see a physician . The following airline travel services provide special assistance to those who need help traveling via airlines and require additional help to do so.
     

AIRLINE TRAVEL

TOLL-FREE HOTLINE
800-778-4838 (VOICE)
800-455-9880 (TTY)

AIR CANADA
888-247-2262

AMERICAN AIRLINES
800-433-7300

CONTINENTAL AIRLINES
800-523-3273 - Domestic
800-231-0856 - International

UNITED AIRLINES
800-864-8331 - Domestic
800-538-2929 - International

US AIRWAYS
800-428-4322 - Domestic
800-622-1015 - International

Patient Advocate Foundation

Patient Advocate Foundation seeks to empower patients to take control of their health care. Case managers work with patients to discover local, state, and federal programs that provide assistance for their individual needs. PAF has produced six major publications, several informational brochures, and several special sections devoted to certain health related topics to assist in this goal. Our case managers have also compiled a list of valuable resources that address several topics that you may find beneficial.

If you or someone you know needs assistance with their insurer, employer and/or creditor regarding insurance, job retention and/or debt crisis matters relative to their diagnosis of life threatening or debilitating diseases, please call us at 1-800-532-5274 or email us.

We are constantly adding resources for patients and professionals. If you are unable to find a particular resource or wish to add a resource, please email us.

  

PAF Publications

The National Financial Resources Guidebook
for Patients - a state-by-state directory


Clinical Trials

Disease Specific Information & Support

Employment Related Information

Insurance Information

Medicare Help

Money Matters

Pediatrics Resource Center

Senior Services

http://rarediseases.info.nih.gov/GARD/

 
www.spineuniverse.com (A resource for back pain and spinal cord information)

www.NINDS.com             (National Institute for Neurological Disorders and Strokes)

www.rarediseases.org     (National Organization for Rare Disorders (NORD) website)

www.spinalcord.org         ( National Spinal Cord Injury Association)

www.nlm.nih.gov             (National Library of Medicine/National Institutes of Health)

www.theacpa.org             (American Chronic Pain Association)

www.theaword.org           ( Arachnoiditis website)

www.medicalacupuncture.org (American Academy of Medical Acupuncture)

http://www.ssa.gov/                         (Social Security Administration)

http://oshpd.ca.gov/HID/Products/Hospitals/FairPricing/index.html (CA State laws regarding charity care and discount
                                                                                                       payment programs)
 

http://www.qualitycheck.org/          (The Joint Commission on Accreditation of Healthcare     

                                            Organizations) Quality check for healthcare facilities

http://www.usdoj.gov/crt/ada/adahom1.htm    (American Disabilities Act website)

http://www.patientadvocate.org/resources.php (A website for solving insurance and

                                                                      healthcare access problems)

 

Support Groups/Forums

 

Below is a list of available Tarlov cyst patient forums. The Tarlov Cyst Disease Foundation provides this list as a potential resource for patients . The Foundation has no affiliation with, nor does it endorse any specific one of the groups on this list.


Europe

cistiditarlov@yahoogroups.com       Italy      (in Italian)

quistestarlov@yahoogroups.com      Spain     (in Spanish)

 

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4. PAIN TERMINOLOGY DICTIONARY

Acupuncture

Oriental practice of inserting needles into the skin at points (Meridians) of the body to help relieve pain and treat illness.

Acute Pain

Sharp or intense short-term pain. Typically follows injury or surgery.

Addiction

Psychological or emotional need for a drug. Associated with cravings and inappropriate efforts to obtain the drug.

Algology

The science and study of pain phenomena.

Allodynia

The sensation of pain triggered by a stimulus to the skin that is normally not painful (e.g., lightly touching a sunburn).

Analgesia

Absence or decreased pain response to stimulation that would normally be painful.

Analgesic

Medicine used to relieve pain.

Anesthesia

Absence or partial loss of sensation.

Anesthetic

An agent (or agents) that reversibly produce anesthesia.

Anti-inflammatory

A medicine that reduces inflammation. Usually related to NSAIDs(Non-steroidal anti-inflammatory drugs.

Arthropathy

Disorder or disease of a joint.

Athralgia

Pain in or affecting a joint.

Causalgia

Intense pain and sensitivity usually following injury to a peripheral nerve.

Central Pain

Pain associated with a lesion or dysfunction of the central nervous system.

Chronic Pain

The opposite of acute pain. Persistent, long-term pain.

Deafferentation Pain

Pain due to the loss of normal sensory input into the central nervous system.

Dermatome

An area of skin supplied by fibers of a single nerve root.

Dysesthesia

An abnormal, unpleasant sensation.

Epidural

An injection into the outer layer of the spinal canal (the epidural space).

Hyperalgesia

Increased sensitivity to pain.

Hyperesthesia

Abnormal, acute sensitivity to sensory stimulation of the skin.

Hypoalgesia

Diminished sensitivity to sensory stimulation of the skin.

Narcotic

Usually refers to opioids--pain-relieving drugs that are derivatives of opium.

Nerve Block

An injection of medication directly into or around a nerve or group of nerves to provide regional pain relief.

Neuralgia

Pain in the distribution of a nerve or nerves and caused by nerve damage or dysfunction.

Neuritis

Inflammation of a nerve or nerves.

Neuropathic Pain

Pain originating from the malfunctioning of the nervous system.

Neuropathy

Disturbance of function or pathologic change in one or more nerves.

Nociceptive

Response to a painful stimulus.

Nociceptor

A sensory nerve receptor that responds to pain.

Opiate or Opiod

A pain-killing drug chemically related to opium.

Pain

An unpleasant feeling that may be associated with disease or trauma.

Pain Threshold

The most minimal stimulation that a person recognizes as painful—this varies from individual to individual.

Pain Tolerance Level

The greatest amount of pain a person can tolerate.

Paresthesia

An abnormal sensation such as tingling or ‘pins and needles’ that may be uncomfortable, but not truly painful.

Radiculitis

Inflammation of a nerve root in the spinal canal.

Radiculopathy

Pain and neurologic deficit caused by injury to a nerve root.

Referred Pain

Pain felt in a body part that is distant from the pain origin. The origin and the body part may share a common nerve pathway.

Rhizotomy

Surgical incision of nerve root(s) within the spinal canal.

Somatosensory

Sensory signals from the body usually referring to signals from the limbs rather than internal organs.

Trigger Point

An area in muscle or connective tissue that is hypersensitive to touch or pressure.

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5. DEFINING PAIN, UNDERSTANDING PAIN, COPING WITH PAIN.

Introduction

If you grab the handle of a hot frying pan, the pain alerts you to danger. You yank your hand back and nurse the injury, and the pain soon subsides. This so-called acute pain (that is, sudden pain) is generally "good" pain because it serves a useful purpose; it's part of the body's warning system that helps prevent serious injury and ensures that wounds are soon attended to.

But for people with chronic pain - pain that lasts at least a few months, sometimes years - the pain message is sent and received over and over but often serves no obvious purpose. Although chronic pain can be a profound challenge for those living with this problem, there are reasons to be hopeful.

* Defining Pain

In its broadest definition, pain is any unpleasant sensation. The way the body "feels" pain is complicated. For example, pain may be acute, as with touching the hot pain, or chronic, meaning that it lasts at least two months. In addition, the quality of pain varies depending on which nerve pathways send the pain message. It may be an intense, shooting pain that comes and goes from moment to moment, or it may be a relentless, grinding ache. In addition, pain can be "referred"; that is, it may originate in one area but be felt elsewhere.

Pain experts divide pain - regardless of its duration - into two main types: pain caused by damage to tissues such as skin, muscle or internal organs and pain caused by nerve damage or abnormal nerve function. Pain caused by tissue damage is called nociceptive pain. Pain caused by nerve damage or abnormal nerve function is called neuropathic pain, or neuropathy. This type of pain is responsible for some of the most challenging cases of chronic pain, in that pain occurs even though there is no ongoing tissue damage. Neuropathic pain may involve any part of the nervous system, from the tiniest nerve in a toe to complex nerve centers such as the spinal cord or brain.

* Experiencing Pain

An array of pain sensors, nerve fibers, pathways and chemical messengers work together to produce the conscious experience of pain:

  • Pain sensors (also called nerve receptors or pain receptors) sense different things. Some sense heat or cold, others sense pressure and others respond best to chemical irritation or movement.

  • Nerve fibers carry the messages picked up through these pain sensors. Some nerve fibers carry messages quickly, others relatively slowly.

  • Pathways are the routes that pain signals travel along nerve fibers; for example, a pain message travels from the toe to the brain along a nerve pathway across multiple nerve fibers.

  • Some chemical messengers (called neurotransmitters) increase the intensity of a pain signal, whereas others decrease it.

For example, if you step on a nail, pain sensors in your foot send a high-speed signal to the spinal cord, which instantly sends a signal back to your leg to jerk your foot away from the nail. This occurs just as - or even before - you "feel" the pain consciously. Meanwhile, pain signals also travel along a separate pathway to the brain, letting you know that you have injured your foot.

This is a very different pain signaling system from the one that would kick in if the pain were associated with an injured organ, as in a case of appendicitis. The brain interprets somatic (external) and visceral (internal) pain signals quite differently because somatic pain receptors send pain signals along different nerve pathways than those used by visceral pain receptors. These visceral receptors, because they are located inside your body, can detect poor circulation or stretch (that is, dilation or expansion) in an organ.

So if you step on a nail, somatic (external) pain receptors relay immediate and precise pain information to your brain. But in the early phases of appendicitis, visceral (internal) pain receptors alert your brain to a more vague problem.

In appendicitis - in cases of visceral pain in general - the end result is nausea and widespread, crampy discomfort rather than sharp pain. In fact, you may find it difficult to describe just where the pain is located in its early stages. As appendicitis worsens, inflammation along the lining of the abdomen sends more specific signals indicating trouble in the right lower part of the abdomen. As the pain becomes more defined, it involves different pain sensors and different pain pathways. This explains how the pain associated with appendicitis evolves from cramps all over the abdomen to sharp, localized pain and points out how variable pain recognition and signaling can be.

The role of your brain. The brain has an elaborate system for modifying pain signals. For example, soldiers in the heat of battle have reported not feeling severe wounds until after the smoke has cleared, and athletes may not notice they've been injured until after a game.

One way the brain reduces pain sensation is by secreting natural painkillers, including chemicals known as endorphins. Endorphins act on the brain in ways similar to narcotics, such as morphine. Another pain-modifying system governs the amount of the chemical messenger serotonin in the brain. Drugs that either mimic these naturally occurring painkillers or affect the amount of them circulating in the brain can be potent pain relievers.

On the flip side, some things may increase pain sensation; some people with chronic headaches, for instance, report that stress can make their headaches worse. And anyone who looks away when getting a shot knows that watching the needle go in seems to make it hurt more.

* Coping With Pain

Sometimes it's clear what causes chronic pain. It may be a symptom of cancer or the reminder of an old injury. It may be a symptom of a chronic illness, such as migraine headaches or arthritis. Or it may be a signal that the nerves themselves are injured (neuropathy). But sometimes chronic pain has no clear explanation and will persist unabated for years.

Many people with chronic pain feel anxious and worried about the future. They worry about how their pain might affect their quality of life - their ability to work and play. Many people with chronic pain have seen several health-care providers without finding relief. They may be frustrated, angry or depressed and uncertain where to turn next.

Fortunately, health-care providers know more about chronic pain than it may sometimes seem, and each year they become better at diagnosing and treating it. Old attitudes about pain are shifting, too; for example, health-care providers have long been hesitant to prescribe potentially addictive narcotics, but as understanding of these and newer drugs has advanced, health-care providers are increasingly willing to treat pain with these powerful tools. New drugs, and new ways of using old drugs, are bringing relief. Some types of chronic pain that couldn't be treated a few years ago, such as migraine pain, can now be controlled.

Strategies for living with chronic pain - how you manage physically, how you work with your health-care providers, how you relate to your family and friends, even how you think about the experience - can make your pain easier to endure.

Last updated July 06, 2004
Reviewed by the Faculty of Harvard School of Medicine

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6. TIPS FOR DEALING WITH PEOPLE WITH PAIN

1. People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.

5. Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.

6. Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.

12. We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.

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7. SOCIAL SECURITY DISABILITY INFORMATION

It is recommended that you contact the Social Security Administration (SSA) via the internet at http://www.ssa.gov/ . At their website you will find all the information needed and the answers to your questions about the process. You may decide to check your local phone directory to determine attorneys who specialize in assisting clients with application for disability.

The Social Security disability insurance program pays benefits to you, if you worked long enough and paid Social Security taxes.

Social Security pays benefits to people who cannot work because they have a medical condition that is expected to last at least one year or result in death. Federal law requires this very strict definition of disability. While some programs give money to people with partial disability or short-term disability, Social Security does not.

In general, to get disability benefits, you must meet two different earnings tests:

A "recent work" test based on your age at the time you became disabled; and

A "duration of work" test to show that you worked long enough under Social Security

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8. SPEAK UP

SPEAK UP about your Healthcare!

Speak up if you have questions or concerns, and if you don't understand, ask again. It's your body and you have a right to know.

Pay attention to the care you are receiving. Make sure you're getting the right treatments and medications by the right health care professionals. Don't assume anything.

Educate yourself about your diagnosis, the medical tests you are undergoing, and your treatment plan.

Ask a trusted family member or friend to be your advocate.

Know what medications you take and why you take them. Medication errors are the most common health care errors.

Use a hospital, clinic, surgery center, or other type of health care organization that has undergone a rigorous on-site evaluation against established state-of-the-art quality and safety standards, such as that provided by the Joint Commission.

Participate in all decisions about your treatment. You are the center of the health care team.

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The Joint Commission's New Speak Up™ Program
Urges Patients to 'Know Your Rights'

(OAKBROOK TERRACE, Ill. – June 8, 2007) The Joint Commission has launched a national campaign to help Americans understand their rights when receiving medical care. "Know Your Rights" is part of The Joint Commission's award-winning Speak Up™ program that urges people to take an active role in their own health care.

Patients who ask questions and are aware of their rights have a greater chance of getting the care that they need when they need it. "Know Your Rights" provides tips to help people become more involved in their treatment, thus improving the safety and quality of care received. The campaign advises patients that they have a right to be informed about the care they will receive; get information about care in their preferred language; know the names of their caregivers; receive treatment for pain; receive an up-to-date list of current medications; and expect that they will be heard; and treated with courtesy and respect.

"Knowing your rights regarding treatment and care is the foundation for all interactions with your caregivers at health care facilities. Candid conversations between patients and their caregivers will help facilitate the delivery of safe, high quality care and ultimately, enhance recovery," says Paul Schyve, M.D., senior vice president, The Joint Commission.

Specifically, The Joint Commission advises people to:

  • Think about how family or friends can play a role – Patients should ask how to designate a family member or friend as an advocate who can get information and ask questions. It is also important to understand the decisions an advocate cannot make for you unless they have been legally assigned that responsibility through an advance directive or power of attorney.

  • Understand rights related to information – The law requires health care providers to keep a patient's health information private, so a form must be signed if a patient wants his or her information shared with his or her advocate or others. Patients also have a right to have care providers fully explain treatment options and risks.

  • Ask questions before entering a health care facility – Discuss issues such as infection control, life support, spiritual needs, security, how to handle a problem or complaint, any procedures that cannot be done at the facility for religious reasons, and how to obtain copies of medical records and test results.

  • Ask your doctor questions – It is important to know how often the doctor will visit during a hospital stay, who is responsible for care when the doctor is not available, what happens if life-saving actions are taken, and how care will be handled if a test or procedure shows that another procedure is needed right away

Founded in 1951, The Joint Commission seeks to continuously improve the safety and quality of care provided to the public through the provision of health care accreditation and related services that support performance improvement in health care organizations. The Joint Commission evaluates and accredits nearly 15,000 health care organizations and programs in the United States, including more than 8,000 hospitals and home care organizations, and more than 6,300 other health care organizations that provide long term care, assisted living, behavioral health care, laboratory and ambulatory care services. The Joint Commission also accredits health plans, integrated delivery networks, and other managed care entities. In addition, the Joint Commission provides certification of disease-specific care programs, primary stroke centers, and health care staffing services. An independent, not-for-profit organization, the Joint Commission is the nation's oldest and largest standards-setting and accrediting body in health care. Learn more about the Joint Commission at http://www.jointcommission.org/.

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9. DISCLAIMER

This website provides information about the activities of the Tarlov Cyst Disease Foundation and information about the medical condition, Tarlov cysts, for which it was founded.

The website is designed for educational and informational purposes. None of the information found on this site is intended to be a substitute for informed professional medical care or attention by a qualified medical practitioner. Visitors to the website should not use this information to diagnose or treat any medical problems without consulting a qualified health care provider.

If you have any questions or concerns about a medical condition, or if you are considering a new form of treatment, always discuss this with the appropriate medical professional. The developers of this website are not responsible, directly or indirectly, for any form of damages whatsoever resulting from the use or misuse of information contained in or implied by any documents on this website.

Although every attempt has been made to insure the accuracy and currency of the content, the website developers assume no liability in the event the information may be found to be inaccurate or out of date.

This disclaimer is applicable domestically (throughout the United States of America) and internationally.

*You are authorized to view and download the content available from this website for scholarly , non-commercial informational purposes only. No content of this website may be redistributed, copied, or reproduced for any commercial use for profit or in mass, without the prior written consent of the Board of Directors of the Tarlov Cyst Disease Foundation.

The Tarlov Cyst Disease Foundation is a recognized 501(c) (3) non-profit organization with IRS approved tax-exempt status. U.S. citizens may make donations to the Foundation which are tax exempt to the extent allowed by law. Anyone wishing to obtain a copy of the IRS ruling can do so by contacting the Foundation and requesting it. No officer of the Foundation receives a salary. All donations are used for Foundation research and education and minimal operations expenses. When you donate to the Tarlov Cyst Disease Foundation, you will receive a letter of acknowledgement suitable for tax purposes.

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