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Tarlov Cyst Disease Foundation

Surveys & Research

Research Information
Please read the "News & Events" page for information about the research project and the researcher, Anne Louise Oaklander, M.D., PhD.

The Patient Survey on this page is for individuals who have been diagnosed with symptomatic Tarlov cysts. Please participate in the survey by scrolling down this page to share your information with the Foundation in order to participate in Tarlov cyst research. The Foundation is sharing compiled data from the surveys with the researcher.
Please include a name or pseudonym and please include your state and/or country on the form. Enter all information requested, since it is all significant in providing solutions about Tarlov cyst disease.
 
Thank you!
 
IF YOU HAVE ANY PROBLEMS WITH THE SURVEY, PLEASE NOTIFY US IMMEDIATELY @
patientsurvey@tarlovcystfoundation.org You should receive an e-mail thank you for participating in the survey with a copy of your survey immediately after submitting it. If you do not, please write to retahoneyhiers@tarlovcystfoundation.org and let me know. THANK YOU.

The Foundation's surveys will be utilized to compile a scientific database that will aid researchers in studying Tarlov cysts. They will eventually be combined with surveys from physicians who are treating Tarlov cysts. The analysis of this data will hopefully lead to answers regarding the causes of Tarlov cysts and solutions for improved treatment outcomes for all those with Tarlov cysts.

Your medical information will remain confidential, protecting your identity; however, there needs to be some identifier on each survey, such as a pseudonym/nickname, if you do not wish to use your real name for the surveys. Please, be consistent with the same name from survey to survey.

Thank you for your participation in our surveys and know that your input will assist clinical researchers and physicians in finding solutions and answers that will benefit all those with Tarlov cysts in the future.

Purposes of the Tarlov Cyst Disease Foundation's Research Studies will be to:

  • Identify potential causes of symptomatic Tarlov cysts; identify incidence of cysts in the population geographically, as well as in relation to gender, age, and onset of symptoms

  • Assess symptoms and differentiate parasthesias, bowel and bladder issues, and other affected multiple organ systems, as well as pain patterns associated with symptomatic Tarlov cysts

  • Evaluate the best imaging parameters for improving the diagnosis of symptomatic Tarlov cysts

  • Develop a statistical analysis to evaluate the existing treatments utilized by the primary physicians of Tarlov cyst patients

  • Determine improved treatments and establish protocols with the best possible outcomes for patients with Tarlov cysts


    Note: If you should have difficulty with submitting the form, and this message pops up ("Please enter the passcode exactly as you see it"), please click on Tools at the top of your browser. Then click on Internet Options; an Internet Options window will pop up.
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    Once this is accomplished, you will be able to submit the form.
Tarlov Cyst Disease Foundation Patient Survey
Tarlov Cyst Disease Foundation Patient Survey

I. General Information

A. Name/Pseudonym Email:
B. Address
                  Street address optional ;* state/country required
C. Gender Male Female
D. Current Age <30 30-40 40-50 50-60 >60
E. Age at onset of symptoms <30 30-40 40-50 50-60 >60

II. History

A. Date of onset of symptoms (Year)
B. Significant occurrences at onset of symptoms. Check all that apply.
  1. Fall  
  2. Rear end collision  
  3. Other motor vehicle accident (MVA)  
  4. Lifting heavy object  
  5. Long car trip  
  6. Plane trip  
  7. Other  
  8. No particular significant incident  
C.  Prior to Tarlov cyst diagnosis, had you experienced back pain or back injury with any other diagnosis? Y N
D. If you answered "yes" to B., did you receive surgical treatment? Y N
    (If yes, briefly describe)
E. Non-surgical treatments you received. Check all that apply.
  Massage therapy  
  Physical therapy  
  Acupuncture  
  Ice application  
  Heat application  
  Bed rest  
  Muscle relaxants  
  Other  
F.  Date of first medical visit for Tarlov Cyst symptoms:
G. Who did you FIRST see for diagnosis and treatment?
  Family Practice /GP  
  Orthopedist  
  Neurologist  
  Neurosurgeon  
  Other  
H. Describe your initial Symptoms (Briefly)

I. Diagnostic Tests you had initially: Check all that apply
  X-ray  
  EMG  
  MRI  
  Myelogram  
  CT  
  Other  
J. Referrals to other Health Care Practitioners?Y N
K. If yes, Check all that apply.
  Neurologist  
  Neurosurgeon  
  Orthopedic Specialist  
  Psychiatrist  
  Physical Therapist  
  Acupuncturist  
  Interventional Neuroradiologist  
  Other  
L. Did a Neuroradiologist read your MRI/CT/Myelogram? Y N
    (If not, who read it?)
M. Who initially diagnosed your Tarlov cyst?
N. What is/are the location of your cyst(s)?
     Size(s)
     Number of cysts
O.  Were there other names used for your cyst other than Tarlov?
Perineural, Sacral, Meningeal, Arachnoid. Other?
P. Did any doctors tell you that:
  1.Tarlov cysts were the cause of your symptoms? Y N
  2. Tarlov cysts were never symptomatic? Y N
  3. They did not know what a Tarlov cyst is? Y N
Q. What treatment options were described for you by your physician or referred physician?


III. Symptoms

Check all that apply
A. Swelling that is visible and palpable(can be felt) over the sacrum
B. Sciatica
C. Numbness in hip or leg
D. Pain in lower back
E. Pain in hip
F. Pain in Thigh
G. Rectal pain
H. Vaginal pain
I. Pain in leg Left Right
J. Headaches
K. Pain in neck
L. Pain in shoulders
M. Tingling, Burning sensation in legs or feet  Left Right
N. Foot Cramps
O. Leg Cramps
P. Difficulty sitting
Q. Sensation that you are sitting on a “rock”
R. Bladder problems:
1. Incontinence
2. Frequency
3. Urgency
4. Residual
5. Inability to urinate and must be catheterized
S. Bowel problems:
1. Constipation
2. Encopresis(cannot control bowel movement)
3. Take stool softeners and/or laxatives
4. Must use enemas
T. Pain in ribs/ midback/chest(Thoracic area)
U. Other

IV.Other Diagnosis/Medical Conditions

Type inside the box below any other medical diagnosis that you have in addition to TCs, such as congenital defects, connective tissue disorders, etc.


V.Other findings on your MRI/CT scan

A. Ruptured/Herniated Discs Location(s)
B. Bulging Discs Location(s)
C. Arachnoiditis Type
D. Osteoarthritis Location
E. Scoliosis
F. Kyphosis
G. Lordosis
H. Spondylolisthesis
I. Other

VI.Treatment outcomes

Type inside the box below any treatments you have had for your Tarlov cysts and a brief comment after each as to improvement, no improvement, worse


VII.Medications

Type inside the box any medications you have taken for Tarlov cysts and if they helped your symptoms or not.


VIII.Activity Level

A. Are you currently employed? Y N
B.  If not currently employed, what was your previous job?
C. Are you unable to work due to Tarlov cyst symptoms? Y N
D. Have you applied for Social Security Disability? Y N
E.  Do you still: (Use the following codes for items below- S (same as usual) O (Occasionally) R (Rarely) N (Never)
  1.Drive  
  2.Travel  
  3.Vacuum  
  4. Cook  
  5. Garden  
  6. Mow lawn  
 
7.  Exercise
If yes, what type?
 
  8. Go to theater, movies?  
  9. Go out for dinner  
F. Do you have problems with the following? (use same codes as in E. above)
  1. Sitting  
  2. Standing  
  3. Lying flat on your back  
  4. Lying on the side of your cyst  
  5. Walking  
  6. Bending at the waist  
G.  What is your preferred position of least discomfort?
H. What is your most uncomfortable position?

IX.Personal Impact of Living with Tarlov cysts

A.What can you no longer do because of your Tarlov cyst symptoms?
B.  What has changed in your life since the TC diagnosis, such as loss of job, social life, etc.


X. List 5 things you would like your family and friends to know about your Tarlov cyst Diagnosis.

1.

2.

3.

4.

5.

XI. List 5 things you would like your physician to know about you and your Tarlov cyst(s)

1.

2.

3.

4.

5.

  DKDS30
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