Brellin needs Specialized Spinal Surgery urgently

Brellin Ross is organizing this fundraiser.

Donation protected

Hello I'm Brellin. I am 54 years young and desperately asking for help to pay for specialized spinal surgery, time is of the essence to prevent irreversible damage and permanent disability.

I have Tarlov Cyst Disease in my spine. Tarlov cysts are fluid filled sacs that expand in the roots of the nerves that grow out of the spinal cord. I have 6 of these cysts throughout my spine. Three in my cervical spine (neck) at C7 /C8, one in thoracic spine at T7, one in lumbar spine at L3 and then one in sacrum (lower back) at S1. This last one is the size of a marble.

Because of the compression of nerves in these areas I suffer from radiating nerve pain from my lower back to my feet, upper back into my arms, numbness across my lower back down to my buttocks. leg spasms and cramps. Sciatica and burning feet. Bowel and bladder issues. Walking and standing are painful. Sittting is worse, imagine every time you sit, you are sitting on a jagged rock.

I can't travel further than to the local shops, I really struggle if there is a queue at the till. Half an hour shopping and I am home in a cold sweat, exhausted and in pain for the rest of the day.

The ballooning of the cysts also cause csf (cerebrospinal fluid) pressure fluctuations which in turn causes headaches, nausea, tinnitus, fatigue and brain fog.
Over time, Tarlov Cysts in the lumbar and sacral spine cause chronic Cauda Equina Syndrome which in itself is a debilitating and devastating condition. CES is a better known condition for the severity of its saddle area symptoms and leg pain/weakness.

I am becoming more disabled week by week as my nerve roots are being damaged. If surgery to drain the cysts and repair the nerve sheaths is not undertaken soon, then irreversible damage is certain.

Tarlov Cyst Disease is a rare disease. There are very few surgeons in the World who will even consider surgery. This surgery is not available in Scotland.

After 3 years of struggling with neurology appointments and getting nowhere, I paid for private MRI's myself. Armed with my scans and reading as much medical literature that was relevant, I self diagnosed that I had this rare disease. Because of a lack of knowledge in the medical profession, I was diagnosed as having a Functional Neurological Disorder and was offered a psychiatric appointment.

Enough is enough.....

This is real pain and so I reached out to the Worlds foremost Tarlov Cyst Neurosurgeon. Dr Frank Feigenbaum. I sent my MRI's through to his office and a day later they contacted me to complete a symptom form.

I have been offered this rare surgery at the end of August this year in Cyprus where Dr Feigenbaum can help me try and get my life back. Recovery will be slow, the nerves take time to heal. But if i take the surgery now, there is a good chance of recovery.

I have ran my Bikers B&B in Conon Bridge successfully for 7 years now and was always out on my motorbike. I sold the bike recently, too sad seeing it sitting in the shed gathering dust. Because of the Covid situation, my business has also suffered and my husband and I are unable to raise loans. If I go ahead with surgery I will have to close the B&B from end of August until April 2022.

The offer of surgery is not just a validation of my self diagnosis of Tarlov Cyst Disease but a real offer of hope from Dr Feigenbaum who I respect as the best.

Finally as a proud and somewhat private person I cannot begin to convey just how difficult it was for me to go public on this matter and to appeal for help. However as I previously outlined time is not on my side and at this crucial juncture pride is a luxury I can ill afford thus my appeal for financial assistance.

Thank you for taking your time to read this and may I also proffer my eternal gratitude and heartfelt thanks for any and all donations regardless of their source or scale.

Brellin Ross