Tarlov Cyst Surgery- Rare Spinal Nerve Disease

https://www.tarlovcystfoundation.org/ 

Hi everyone.. Thank you for taking the time to read my story..

I was diagnosed with 35 Tarlov cysts. Tarlov cyst disease is a rare disorder of the spinal nerves.  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). Those who have progressive and prolonged symptoms run a risk of neurological damage, if the cysts continue to compress nerve structures. The symptoms depend on the particular nerve(s) being compressed.  Some of the symptoms include,  back, sciatic area pain, knee, leg, foot pain.. essentially pain everywhere that nerve controls. Burning sensations, loss of feeling, bladder or bowel incontinence, migraines, visual disturbances, arm pain, numbness, tingling, weakness, difficulty walking, sitting, lying, standing.. on and on...  One can easily be rendered disabled, bed bound, wheelchair bound, or home bound. The pain is horrendous.

My symptoms have progressed as I have not one but 35 Tarlov cysts in every level of my spine. Treatments such as medication management, acupuncture etc. are not effective in stopping the progression of nerve damage and as much as I wanted to avoid surgery, it is necessary.

There are 2 highly  specialized Neurosurgeons in the US that treat this disorder. I do have insurance but the costs associated with copays, travel to either TX or CA, lengthy hotel stay, food, etc. are needed to get me there and back. As with any surgery there can be complications that require hospitalization and/or the need to stay in the area and this is expensive.

Please read the information at the link attached to learn about Tarlov Cyst Disease. There are countless men and women diagnosed and suffering with this rare disorder. There is much to learn and for those who have odd symptoms and/or back pain but the MRI report don't show any  findings, make sure you get a copy of your MRI as Radiologists are taught to overlook Tarlov cysts as incidental findings. They are NOT incidental.. They are life ruining and horrible neurological findings when symptomatic. The Tarlov Cyst Foundation offers a vast amount of information regarding TC's and a tremendous amount of support to those with this diagnosis.

I have been unable to work since 2016 and despite insurance costs for medication, acupuncture, copays etc. are more than budget allows. Asking for donations is hard... so much so I've waited 5 years to do so.

Much love, and light to anyone capable of and who chooses to help me get my life back.. I have a beautiful grandbaby to get back to.. Thank you friends!