A mum has been bedridden for the last two years after baffling doctors when she suddenly lost all feeling in one side of her body.
Gaby Brandon spent three days in a hospital bed before making a miraculous recovery from her “stroke”.
But after being discharged, headaches she had suffered with for years got progressively worse.
Lying permanently flat on her back is the only way the 49-year-old can relieve the pain, and she now relies on her family’s support for almost everything.
Gaby, from Crookham Village, Hampshire, said after multiple misdiagnoses she was eventually formally diagnosed with a CSF leak, after much research of her own.
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Her brain fluid is escaping through a microscopic tear in the spinal cord and remaining horizontal is the only way to balance it out and relieve her pain and neurological symptoms such as blurred vision, nausea and extreme dizziness.
Since November she has been awaiting a risky operation to repair the hole, after an initial simpler procedure failed.
And – in part due to the pandemic – this won’t happen until at least September.
Gaby, who worked as a freelance subeditor before her condition forced her to quit, said she had been essentially left to self-diagnose through Google for years.
She believes the tear likely occurred nine years ago and has slowly got progressively worse since.
“I’ve paid thousands for scans, some of which have been a total waste of money,” she told the Mirror. “I have had little guidance and help from the medical community.
“I believe thousands of others who have been wrongly diagnosed with ‘migraine’ have a CSF Leak – caused by something like an epidural, or just spontaneously because they have wear and tear on their spine or an underlying connective tissue issue.”
Gaby continued: “The medical community is very unaware of this and I have seen dozens of doctors who simply do not understand them, leading to many [people] being ignored.”
Through a Facebook group run by UK-based charity CSF Leaks Association, she has learned of people who have taken their own lives because the condition “completely steals any kind of life you may have”.
Gaby was diagnosed with scoliosis – a curvature of the spine – when she was 16 and prior to her “stroke” was told her increasing back pain and headaches were probably down to that, before doctors suggested it could actually be labyrinthitis.
An osteopath believed she may be hypermobile and in early 2018 a rheumatologist then diagnosed her with mild Ehlers-Danlos Syndrome, a group of rare conditions that affect connective tissues.
At the severe end of the spectrum sufferers struggle to breathe independently, while others can be left wheelchair bound.
CSF leaks can be experienced by women after giving birth via C-section, which involves injecting an epidural into the spine, and can cause a minute tear.
Gaby understands that EDS is “probably 99 percent the reason why people have a spontaneous leak for no reason”.
When it’s not caused by something like an epidural injection, where the tear is clearly located, trying to find the source is “like trying to find a needle in a haystack”.
“The problem is…if they have to go and find the leak they have to do a CT myelogram, pushing fluorescent liquid into the spinal cord,” she added.
“It’s a pretty nasty procedure, just to find the leak.
“I think a lot of hospitals, they just haven’t got the training in it, they don’t know what they are doing.
“It’s messing with the spinal cord and I think a lot of hospitals just don’t want to get involved with that.”
After her EDS diagnosis, Gaby said she “started going downhill with the pain in my head”.
“I was getting to the point where I could barely sit up at work because the pain was horrendous.
“I was getting very blurry eyes and when I was walking along I couldn’t tell the depth of the floor.”
This all came to a head in June 2018 when she was taken to A&E with a suspected stroke after losing the feeling in the left side of her body.
After three days in a hospital bed, the feeling came back and she was told it was likely a hemiplegic migraine.
But Gaby has rapidly deteriorated since then, and can no longer work as she can only sit upright for minutes before the headaches become unbearable.
She continued: “I can’t do anything, I can’t go anywhere, the only places I’ve been in the last couple of years have been to go to hospital appointments. It’s very debilitating.”
Asked to describe her pain, she said: “The headaches are mainly at the back of the head, but it radiates all down your back.
“So my spine is agony, down the back of my neck is agony, it’s like it’s on fire.
“Then I start getting very blurred vision, it just feels like my eyes have been smeared with cream, and you can’t see properly.”
Still unconvinced she had been properly diagnosed, Gaby persisted and her rheumatologist agreed her symptoms were not a migraine.
Initially, he thought it could be a Chiari malformation but after finally being diagnosed with a CSF leak, in December 2019 she was given a blood patch at Stoke University Hospital, which involves injecting blood into the spinal cord to block the leak.
However, it didn’t work, in part because doctors were not able to find exactly where the tear was.
And while waiting a year for another emergency patch, she paid to see a private surgeon in London who specialises in leaks and who was able to pinpoint where her tear was.
But because of her scoliosis, he told her another patch won’t work and she needs an operation.
The leak is at the right T7 nerve route, so the neurosurgeon will open Gaby up and apply fibrin glue there to seal the leak.
“This operation that I’m having, there’s a one in a hundred chance of being paralysed afterwards. What do I do?” she said.
“Do I sit here not being able to get up for the rest of my life or do I take the risk of having it done.”
Gaby said her husband and adult children have helped her through, but dreads to think what other sufferers must go through, with one she knows having had to hire a full-time carer.
“Somedays I feel really low with it, really quite depressed because it’s just like I’m completely pointless.
“I don’t do anything, I don’t cook dinners anymore, I’m just like a pointless person. Some people have taken their life – not that I would – but I can see why people have. It’s not me. I’m determined to get better. And that’s that.
“I’ll be breaking down doors. As it happens, I don’t have to do that, I just have to wait for Covid to end and get an operation,” she added.