Help Vera Get Surgery for a Rare Spine Disease

Hi, my name is Vera.

I am a Social Worker and I am facing the very real possibility of life-long disability, and permanent neurological damage.

I was diagnosed with Tarlov Cyst Disease a couple of years ago. I started to feel that something was very wrong after I was rear-ended in a car accident. I experienced pain, and difficulties walking which has gradually worsened with time. It has progressed to excruciating nerve pain combined with bone-on-bone grinding pain and crushing sacral pain that is debilitating anytime I’m sitting, standing, walking and/or bending.

With CT and MRI scans, I learned that I have several very large Tarlov cysts, large masses that have grown inside my spine. These cysts have significantly ground down my pelvic bone, and are pushing against my nerves. In the beginning, I would get flare ups of pain that would then reduce back to a baseline of pain that never went away. This was actually better than what I have now - excruciating pain with sitting/standing/walking even for short periods of time, muscle weakness, loss of sensation, numbness in one hand and burning in the other, regular headaches, exhaustion and brain fog. These are just some of the symptoms that I endure on a daily basis. There are unfortunately a lot more consequences that I feel is best to keep private. If I do not get surgical treatment, I risk permanent neurological damage and the loss of the use of my legs.

I am a social worker and mental health counsellor and I have spent my entire career devoted to the clients and patients I have the privilege of working with. Unfortunately, with Tarlov Cyst Disease being a progressive disease, working has become almost unbearable. In my work, I am required to sit for 60 minutes at a time with clients. This may not sound like much but 10 minutes of sitting leaves me with pain that make every movement excruciating. In order to feel any sense of relief, I would need to lie down on my side to rest and recover from the pain of sitting. I am, of course, unable to do this at work so I would force myself to get through the work day and spend my evenings resting. There are times, however, when pushing through stops working and I would be forced to find an empty room or a table in the office to lie down for brief moments just so that I can try to pull my body back to my clients.

When I am not working, I must lie down and rest. This has now become my life. Due to my limitations, I am seldom able to go out with friends or enjoy a sunny day outside as simple things like driving or sitting at a restaurant or cafe has become impossible to endure. Going out means more pain, pain that I would have to recover from so that I am able to return to work the next day. I do not want to give up the work that I love, to serve the people in my community as a social worker and counsellor. I do not want this disease to stop me from pursuing this life work that I know I am meant to do. I do not want to be on disability.

Symptomatic Tarlov Cyst Disease is a rare disease as only 5-9% of the population have cysts but only 1% of that 5-9% experience symptoms. There are unfortunately only a handful of specialists in the world who are able to properly treat Tarlov Cyst Disease. I live in B.C. Canada, where there is very little understanding of this disease and therefore, my experiences and pains are often dismissed. Not only that, there are no specialists where I live who have the expertise to treat this disease in a manner that improves the condition. In fact, the treatments offered in Canada have often resulted in worsening pain and even more difficulties with mobility. This is not a treatment plan but a game of roulette with my body.

I have had the fortune of speaking with Dr. Feiganbaum of Dallas, Texas, one of the world’s leading experts in treating Tarlov Cyst Disease. Dr. Feiganbaum has developed and refined a surgical treatment that has shown to improve the lives of his patients. For his international patients, he performs this surgery in Cyprus, Europe. I have done extensive research into his treatments and it is the most promising option out there for me.

I am not used to sharing my story. I have spent my career listening to the stories of others. It is difficult for me to ask for help as I am used to being the helper. But I have had to face the hard truth that I need help too, especially if I want to be able to continue being there for others.

This is where you come in.

I am humbly asking for financial assistance to fund my flight, stay and surgery in Cyprus with Dr. Feiganbaum, as well as financial support during my recovery when I will not be able to work to support myself and my family.

It’s a big ask. I know. If you are able to help financially, please know that every dollar counts. If you are unable to help financially, please share my story.

Please help me to get back even a little bit of my life.

Please help me so that I may be able to keep helping people.

Thank you for taking the time to read my story. If you would like to learn more about Tarlov Cyst Disease, please take a look at the following links:

https://rarediseases.org/rare-diseases/tarlov-cysts/

https://www.tarlovcystfoundation.org/