Spinal Cord Tarlov Cyst Surgery in Texas

My name is Tamara and three years ago I was diagnosed with Tarlov cyst disease.

Firstly, one of my goals is not only to ask for financial assistance but also to create awareness of this disease and to give so many people who suffer daily, a voice, a voice that has been denied by our doctors and health care system, a voice that is dismissed, and for the voices that has been silenced.

I was told that I was most likely born with this disease but didn’t start showing signs until I was 25. It was around this time I was in a car accident and I assumed the pain I was feeling was from that. Little did I know my spine had already started to deteriorate.

Over the last few years, the size of the cyst has increased to 6.1 craniocaudal by 5.1 anteroposterior by 5.8 transverse which is increasing my symptoms and is now causing nerve damage. The nerve pain can be debilitating at times and sitting, standing, walking and bending are all painful, I have extreme difficulties going up stairs or any form of incline and the only position that provides relief is laying down. Initially, my symptoms would flare and then subside only to be told there was nothing they could do and to keep adjusting my lifestyle and medications as my symptoms progressed.

Now my symptoms are becoming chronic and increasingly worse, and include: (1) Severe to moderate pain in the area of the nerves affected by my cyst, (2) Muscle weakness, (3) Difficulty sitting or standing for prolonged periods, (4) Loss of sensation on the skin, and (5) Loss of reflexes with heaviness in my legs and feet. These are some of my symptoms, but not all of them. If nothing is done, then I risk permanent neurological damage and potentially the use of my legs as the cyst is wrapped around my spinal cord and now starting to deteriorate the surrounding pelvic area. With Tarlov cyst Disease some days you feel ok, and I try to always take advantage as you don’t know how long it will last. More recently I struggle to manage daily activities and limited to what I do without consequences. I consider all details even if it means a longer car ride or standing without places to rest. I am now 40 yrs old, and a proud step mom of 4 but sadly this condition has prevented me from bearing any children of my own due to its risks. With it being a progressive disease, unfortunately, once you are showing signs and become symptomatic, you will continually worsen.

This year alone, I have had two spinal surgeries, but those surgeries did not address this problem. My spine is bolted and screwed together with hardware giving me some stability for now. All the surgeons in my network will not perform this specialized and complex Tarlov cyst surgery. I have consulted face to face with Dr. Frank Feigenbaum in Dallas Texas who is one of only a few surgeons in the world with the experience and proven good outcomes for Tarlov cysts.

Dr. Feigenbaum has developed and refined a Tarlov cyst surgical treatment that has been shown to improve the lives of his patients. This surgery is survivable without permanent paralysis, barring any complications.

My surgery will be this upcoming January but unfortunately it’s difficult coming up with the financial costs of travel, out of pocket surgery cost and for the extended stay in Texas which include an easily accessible and comfortable place to recovery after released from the lengthy hospital stay, flights, and round the clock care until I am cleared to travel home. My family and I are asking for any financial support to help with my out of state surgery. Every little bit helps.

I will end with this…. For years and so many times throughout this process, I would question why this is happening to me, and it wasn’t until recently I realized, that it wasn’t happening to me, but rather through me, and I’m here to tell my journey and share my struggles, and to also help so many others out there going through the same thing and remind you that its not TO YOU….. it’s THROUGH YOU.

For anyone struggling, whether it’s with your health, your family, or your faith…. Keep treading that water, keep fighting for your voice to be heard, and above all do not give up hope.

"But I will restore you to health and heal your wounds,’ declares the LORD" ~ Jeremiah 30:17

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”– Haruki Murakami