Ross-shire woman in agony over condition appeals for help raising £50K for 'race against time' operation
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A ROSS-SHIRE woman who believes a rare spinal nerve condition is to blame for leaving her in constant agony is crowdfunding to secure specialist surgery abroad.
Bed and breakfast owner Brellin Ross (54) has been unable to convince neurologists at Raigmore Hospital in Inverness that she is suffering from little-known Tarlov Cyst Disease.
But she says her self-diagnosis, with scans obtained privately in Aberdeen, has been backed up by one of the world’s leading experts in the field.
If correct, Mrs Ross faces a race against time to undergo surgery and avoid irreversible damage and permanent disability.
Tarlov cysts are fluid filled sacs that expand in the roots of nerves that grow out of the spinal cord, radiating often severe pain throughout the body.
It also brings a host of other nasty symptoms from headaches and exhaustion, to bowel problems and tinnitus.
Since they are part of the nerve, the cysts cannot be safely removed, but are drained and treated to relieve suffering and prevent a return.
Very few neurosurgeons anywhere in the world have the expertise to operate, but Texas-based Dr Frank Feigenbaum is reputed to have a high success rate.
He has offered to operate on Mrs Ross at his European clinic in Cyprus in six weeks’ time and she is now trying to raise £50,000 online to pay for the treatment.
With friends, neighbours, family and complete strangers rallying, she has already topped £20,000 within days.
Describing herself these days as “a virtual prisoner” in her own home, the married mum, who runs the Bikers B&B on Leanaig Road with joiner husband Wayne, first succumbed to progressively worsening symptoms three years ago.
But after referral by her GP, the neurology department at Raigmore Hospital diagnosed with a different condition, functional neurological disorder, classified more as a mental health issue.
Even if she had been diagnosed with Tarlov Cyst Disease, the specialist spinal operation is not available on the NHS in Scotland. There is a three-year waiting list in England.
“I have six of these cysts throughout my spine,” Mrs Ross explained.
“Walking and standing are painful, but sitting is worse, like sitting on a jagged rock.
“I can't go out now very much and I’m a virtual prisoner in my own home
“Half an hour shopping and I am home in a cold sweat, exhausted and in pain for the rest of the day.
“I am becoming more disabled week by week and if surgery is not undertaken soon, then irreversible damage and permanent disability is certain.
“I feel in myself now it is getting worse, more quickly. I feel the deterioration and I’m so grateful for the way so many people have rallied behind me.
“It has been incredible and I’m so thankful. I’ve even had people coming to my door to donate money.”
Mrs Ross has been trying to find cheaper alternatives, closer to home than the Cyprus operation, but has discovered there are only a handful of worldwide options.
The operation’s success rate is said to be good, but Mrs Ross added: “You really have to get it done before there is too much nerve damage.
“It really is a race against time.”
A spokesman for the NHS in Scotland confirmed treatment for the condition currently not available in Scotland.
Her fundraising appeal page can be found at https://tinyurl.com/vt8r5w8n
