Tarlov Cyst Disease: Barnsley dad’s mission to raise £50k for surgery to avoid permanent disability

A 51-year-old father of two from South Yorkshire needs to raise £50,000 for a specialist surgery to remove cysts on his spine, which if left untreated will leave him permanently disabled.

Keith Hawkes, from Penistone, Barnsley, was diagnosed with Tarlov Cyst Disease only six months ago, despite having suffered with the condition since 1996.

He said: “My wife is having to do everything around the house and the kids are mucking in too. My life is running through my fingers. I just exist now. I’m starting to feel a bit of a burden.

“It won't be long before someone starts having to help me get dressed, and it won’t be long until I’m in a wheelchair."

Keith and his family are not able to pay for the surgery without help from the public on their GoFundMe page, but it was difficult for him to reach out and share about his condition.

He said: “It’s not something I like doing. People at my work have put in a great deal of money. It makes me almost cry, really. But I feel like I have been backed into a corner. 

“The NHS won’t fund it so this is it. This is where I am now.”

The cysts, containing spinal fluid, form at the root of nerves in the lower spine. They cause damage to the bone and nervous system if left untreated, and lead to migraines, chronic fatigue, memory issues, and chronic bowel and bladder issues.

Keith, who has experienced all of those symptoms, said: “I really struggle with sleep because of the pain, and I’m up and down all night. I cannot sit for long because it feels like I'm sitting on a red hot poker, but I can't stand for too long either.”

He used to be a keen sportsman, cycling competitively and playing football and running, until everything changed overnight in 1996.

“I woke up and I had just lost all my strength. I had lower back problems and pain in my legs. I put up with it for a while, but my sporting ability just went off a cliff,” he said.

“Recently things got really bad, and the NHS is taking it more seriously. Initially they gave me physio, which doesn’t work because of the nerve compression. They wouldn't sign me up for any scan either, so I got one privately and it showed these cysts.

“But the NHS said they don't cause symptoms. So, I went and researched whether I could get any treatment myself, and it turns out there are only a few people in the world who can do it.”

The leading doctor in the world, Dr Feigenbaum, who diagnosed him, said it is as though “marshmallows are blocking his spinal canal”. 

There is such high demand for Dr Feigenbaum around the world that he no longer does any other type of operation. He has done the surgery that Keith needs around 4,000 times.

Tarlov cysts are surprisingly common and it is estimated that 4% of people have them without ever experiencing symptoms or problems. Larger cysts, which cause pain and symptoms like Keith's, are rare.

Keith, who has now developed a curvature in his spine, said: “I will end up permanently disabled without the surgery. The cysts are eroding my spine from the inside out. The actual bone is eggshell thin. If that goes through and breaks, I’ll have spinal fluid leaking through into my body.”

The doctor suggested the trigger of the cysts to have been whiplash from a cycling accident Keith was in, shortly before his symptoms started.

Keith said: “It is gradually affecting me more. I actually became quite reclusive. I used to be extremely sociable and I lost that, because I lost all my confidence. I felt like a wounded animal.”

He previously worked as a countryside manager for the National Trust, but took a step back to be a ranger after feeling he was too tired all the time to cope in the managerial position. 

“I haven’t been in for the last two and a half years. I spent ages trying to get that job and I will probably end up losing it. They have kept it open for me, with someone in the role temporarily, but they can't do that forever,” he said.

Dr Feigenbaum has offered to operate on Keith at one of Europe’s leading spinal units, Aimis Spine, in Cyprus this autumn.

Keith said: “This surgery is my only chance really. It's the public as a whole that I need. I might make it this autumn, you never know. I would like to aim for this autumn. The sooner the better. After that, he isn’t back until Spring.”

The GoFundMe page is currently at £1,780, meaning £48,220 is still urgently needed before mid-October.

“If I am honest, I had in my mind it might cost £25,000. When they said how much it costs, I was like, oh my god. Me and my family cannot raise anything like that," said Keith.

“I cannot believe how much we've got so far. I’ve thanked everyone individually who has donated. There have been people who I haven't spoken to for years. A lad who I haven’t spoken to since uni put £100 in. I couldn't believe it.”

You can donate to Keith’s surgery via his GoFundMe page.