Living with Tarlov Cyst Disease
Sometimes people with Tarlov cyst disease feel isolated and invalidated because the disease is relatively rare and many healthcare providers have limited experience with it.
The good news is that the landscape is improving. A range of treatment options exist, from pain management to non-surgical procedures to specialized surgery performed by experienced neurosurgeons. Recent surgical outcomes data is encouraging — a recent study found that nearly 80% of patients reported symptom improvement at two years post-surgery, with no recurrence of treated cysts and a cerebrospinal fluid leak rate of less than 1%.
While the journey can be difficult, many patients go on to live full, active lives following treatment, and resources like the Tarlov Cyst Disease Foundation exist to help connect patients with the information and specialists they need.
Will I be able to work and live normally?
Everyone experiences this journey and diagnosis differently. The ability to work and live normally depends on a number of factors including the size, number, and location of your cyst(s), as well as how badly your symptoms affect daily life. Many people experience relief from symptoms through pain management or non-surgical procedures. And, ultimately, many people choose to pursue surgical treatment.
For people who pursue surgery, many eventually go on to live a normal life and many others are able to do most things they want to do but are careful to not push activities too hard or aggressively. If you decide to have surgery, the ability to work and live normally following your surgery depends on how closely you adhere to post-treatment directions and most importantly, how your nerves are able to heal and respond.
Why do my symptoms come and go, or get worse with certain activities?
Certain physical activities may directly irritate the affected nerves and temporarily worsen your symptoms. Once the nerves settle down, symptoms will often subside.
Why does my doctor seem unfamiliar with this condition?
Most doctors are not well informed about Tarlov cysts. They may not have been exposed to Tarlov cyst disease in medical school or have very limited exposure to patients with Tarlov cyst disease in training. If you want to further educate your doctor, we have a resource you can use.
Who can I turn to for help?
Neurosurgeons, interventional neuroradiologists, and pain management specialists may have training and experience in treating Tarlov cysts. To locate one near you, see Find a Healthcare Professional.
How do I get my family and friends to understand more about this medical condition and how my life has changed living with this diagnosis?
Our founder, Reta Honey Hiers, wrote a letter to friends and family to explain her diagnosis and struggle with Tarlov cyst disease. The letter has been updated, and is available for you to share with your family and friends.