Conon Bridge B&B owner thanks amazing community response to heartfelt plea for special operation for Tarlov cyst disease after living in constant pain for years as procedure in Cyprus goes ahead
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A HUGE community fundraising effort has transformed the life of a Ross-shire woman who was left in constant agony from a rare spinal nerve condition.
Conon Bridge bed and breakfast owner Barbara-Ellen Ross, better known as Brellin, lived in crippling pain and fear of permanent disability from the little-known Tarlov cyst disease.
In despair last summer, and facing a race against time as her condition deteriorated, the 54-year-old made a last-ditch plea for help in a crowdfunding campaign, first reported by the Ross-shire Journal.
What followed, simply blew her away.
Heartfelt support from friends, family, neighbours – and complete strangers – saw 218 individual and group donations raising £32,750 towards the £50,000 cost of specialist surgery in Cyprus.
The remaining £17,250 of the operation was paid for by Mrs Ross with a personal bank loan.
The world’s leading expert in Tarlov cyst disease, Dr Frank Feigenbaum, carried out successful surgery on three spinal cysts in the American clinic in Nicosia at the end of August.
Tarlov cysts are fluid-filled sacs that expand in the roots of nerves that grow out of the spinal cord, often radiating pain throughout the body.
Mrs Ross now wants the NHS in Scotland to finally fully recognise and treat the condition.
Before going private, she had struggled for over two decades to gain the recognition of a proper medical diagnosis.
“The operation went really well, and I’m just eternally grateful to all the incredible people who got behind me with donations,” Mrs Ross said. "Especially when times have been so tough for so many, I will never be able to thank everyone enough.
“The scan I paid for in Aberdeen had shown two cysts, but Dr Feigenbaum found three that were causing the problem.I was on my back for 24 hours after the surgery and then, the next day, they got me up on my feet. They had to make sure I didn’t have a spinal fluid leak, but other than that I was up and about, walking – it was amazing, really.
“Straight away I felt my legs were a lot stronger than before the operation. The immediate pain in my spine was gone.It maybe took about six to eight weeks after that before other symptoms began to ease and some of the nerve pain will take time as the healing process can take years.
“It comes and goes, but I can have weeks completely without it. I’m no longer living in constant pain, which was just exhausting. The worry of becoming disabled later in life is gone now as well.
“I feel like I’m only going to get better, not worse.”
An MRI scan at Raigmore Hospital, requested by the US specialist, showed surgery had been a success.
“I’m starting to do rooms up in the bed and breakfast on my own. I sold my motorbike last year as I could no longer ride it, but in the next few years I might be able to get one again.
“It has just completely changed my life, so much for the better.”
Mrs Ross, who runs the Bikers' B&B on Leanaig Road with joiner husband Wayne, has had contact from other Tarlov cyst sufferers including an Aberdeen man who had to spend his life savings on the same operation in Cyprus.
Looking back she said: "To be dismissed when you know there’s something wrong is really quite demoralising. Illness can be a lonely place, especially when people aren’t believing you. I have Tarlov’s and I’ll have it for the rest of my life, but I really hope people like me will be able to get treatment through the NHS in the future.
“I’m just so grateful that so many people out there did believe me and came to my help with donations.
“I’m really very lucky.”
Ross-shire woman in agony issues £50K crowdfunding plea
Operation hope for Ross-shire woman living in constant pain
