Anna HillA woman who suffered from debilitating migraines for nine years says her symptoms ended after she paid for “dangerous” surgery.
Anna Hill, 41, was told by a neurologist who once saw her suffer from 94 days of migraines that there was no explanation for her condition. She became so desperate, she raised funds for an operation that removed a benign brain cyst.
Most surgeons consider the treatment “irresponsible”, but a new NHS clinical trial has found that nine out of 10 patients are “better” after having it.
“I’m working again, I’m exercising, I’m socialising, which I couldn’t do before,” Miss Hill said.
‘I was in bed 24/7’
Miss Hill, from Hotwells, Bristol, first developed symptoms as a teenager, including migraines, nausea, dizziness, tinnitus and brain fog, meaning she was unable to hold down work.
“I’ve spent most of my time in bed just trying to get rid of my headaches,” she told the BBC in 2018, before she flew to Germany for the operation.
She added that most of the seizures made her feel like she had “lost herself”.
Ms Hill eventually had a brain scan, which revealed a small growth.
She then joined a pineal cyst support group, comprised primarily of young women, who believe such cysts are responsible for debilitating symptoms.
Ms Hill raised £36,000 to travel to Germany in 2018 to be treated by neurosurgeon Professor Henry Schroeder from Greifswald University Hospital.
In 2018, Professor Schroeder claims to have performed 48 operations with a 94% success rate.
Professor Alastair Jenkins of the Society of British Neurological Surgeons believes the operations are “irresponsible”.
He said: “There are about 40,000 neurosurgeons in the world, the fact that there are only six who are willing to do this, I think says more about the ability of these neurosurgeons to do the procedure. ”
He cautioned that pineal cysts should only be removed in extremely rare circumstances, and believed that the successful results of the operation could be explained by the “placebo effect.”
After a long recovery, Ms Hill said her life is now back to normal.
“I think at my worst, I had a migraine for 94 days, and nothing would touch it, no painkillers, even really, really strong ones.
“When you interviewed me, I was in bed 24/7.”
Now, she is able to work, exercise three times a week and hang out with friends.
Adden Brookes Hospital in Cambridge has completed a clinical trial on 40 patients with pineal cysts to try to answer the question of whether the operation is leading to real, or placebo, improvement.
Led by neurosurgeon Professor Thomas Santaris, the study involved patients being assessed by various specialists, and their symptoms were documented before and for three years after the operation.
Professor Santaris said: “The study shows that the treatment is effective and safe.
“Approximately 90% of patients are overall better at one year after surgery, and this benefit is maintained until the latest follow-up, which is an average of three years.”
Former neurosurgeon Professor Richard Nelson, who led the development of the Institute of Clinical Neurosciences in Bristol, said the “placebo effect” rarely accounted for 90% of the results.
“To say that you would reach a placebo effect of 90% and I think that suggests that there must be some mechanism for improvement, certainly in selected patients,” he said.
Cara Williams, 36, a lawyer from Bristol, had the surgery in 2019.
She said: “A few days after the operation my mum and husband both said that when they looked into my eyes I saw myself again, and I felt the same way.
“I felt like this huge pressure had been lifted off my mind.
“I’ve got my life back and without this surgery I wouldn’t be able to do any of the things I’ve done in recent years.”
Professor Santaris has already presented his findings at an international conference and hopes to submit them for publication soon.
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But Professor Jenkins warned that while it is tempting to attribute symptoms such as headaches and dizziness to them, this is not always the case.
Surgery is not without risks.
He said: “Unfortunately – or perhaps fortunately – medicine doesn’t work that way.
“Some of these anomalies are very common, but rarely cause a problem.
“In order to make a link with the scan findings, and suggest surgery, there must be a viable mechanism for causing the symptoms and a reasonable expectation that the symptoms will be resolved by surgery.
“And surgery, of course, is not without risks. For any surgery, the risk of operating must be less than the risk of not operating.”
He added that symptoms of a pineal cyst can develop if the cyst is large enough to obstruct the passage of cerebrospinal fluid — the fluid constantly produced by the brain, which bathes and supports it. does
“In this case, the pressure inside the head can build up, causing headaches and sometimes more serious problems.
“If it’s not, major surgeons won’t offer the surgery.
“But in the case of pineal gland cysts, there’s a lot of information on the web that tempts patients into surgery for minor and often unrelated symptoms.
“Some surgeons are willing to offer surgery and that’s where the controversy begins, because surgery for these deep-seated cysts is not without significant risks,” he added.
There are no current plans to offer surgery to NHS patients.