Woman’s Migraines Cease After “Risky” Brain Surgery, Amidst Medical Controversy

Anna Hill, 41, who endured debilitating migraines for nine years, reports that her symptoms have disappeared following “risky” surgery she financed herself. Neurologists had previously informed Ms. Hill that her condition, which once included a 94-day migraine episode, had no explanation. Her desperation led her to crowdfund for the operation, which involved the removal of a benign brain cyst. While the majority of surgeons consider this treatment “irresponsible,” a recent NHS clinical trial indicated that nine out of 10 patients experienced an improvement in their condition after undergoing it. Ms. Hill stated, “I’m working again, I’m exercising, I’m socialising, something I wasn’t able to do before.” Ms. Hill, a resident of Hotwells, Bristol, first experienced symptoms during her teenage years. These included migraines, episodes of nausea, vertigo, tinnitus, and brain fog, which prevented her from maintaining employment. In 2018, prior to her journey to Germany for the operation, she informed the BBC, “I have spent most of my time in bed just trying to sleep off the pain in my head.” A brain scan eventually performed on Ms. Hill identified a small benign growth. Subsequently, she became a member of a pineal cyst support group, primarily composed of young women, who attribute debilitating symptoms to these cysts. In 2018, Ms. Hill raised £36,000 to seek treatment in Germany from neurosurgeon Prof Henry Schroeder of Greifswald University Hospital. Prof Schroeder had reported performing 48 operations with a 94% success rate in 2018. Prof Alistair Jenkins, representing the Society of British Neurological surgeons, considers these operations “irresponsible”. He stated, “There are around 40,000 neurosurgeons in the world, the fact that there are only six who are prepared to do it, I think says more about the procedure than about the ability of those neurosurgeons.” He cautioned that pineal cysts should be removed only in exceptionally rare cases and suggested that the reported successful outcomes of these operations might be attributable to the “placebo effect”. Following an extended recovery period, Ms. Hill reported that her life had returned to normal. She recalled, “I think at my worst, I had a migraine for 94 days, and nothing would touch that, no painkillers, even the really, really strong ones. “When you interviewed me before I was in bed pretty much 24/7.” Currently, she is capable of working, exercising three times weekly, and engaging in social activities with friends. Addenbrookes Hospital in Cambridge recently concluded a clinical trial involving 40 pineal cyst patients. The trial aimed to determine if the operation yields genuine improvement or a placebo effect. Under the leadership of neurosurgeon Prof Thomas Santarius, the study entailed assessments by various specialists and documentation of patients’ symptoms both before and for up to three years following the surgery. Prof Santarius stated: “The study showed that the treatment is effective and safe. “About 90% of the patients are overall better at one year following surgery, and this benefit seems to persist till the latest follow up, which is on average, three years.” Prof Richard Nelson, a former neurosurgeon who spearheaded the establishment of the Institute of Clinical Neurosciences in Bristol, commented that the “placebo effect” seldom explains 90% of outcomes. He remarked, “It would be stretching things to say you would reach a placebo effect of 90% and I think that suggests that there have to be some mechanisms underlying the improvement, certainly in selected patients.” Kara Williams, a 36-year-old solicitor from Bristol, had the surgery in 2019. She recounted: “A couple of days after the operation both my mother and husband said that by looking in my eyes I looked myself again, and that is how I felt. “I felt this huge pressure had been lifted from my brain. “I’ve got my life back again and without that surgery I wouldn’t have been able to do any of the things I have done in recent years.” Prof Santarius has already shared his findings at an international conference and intends to submit them for publication soon. The recent disclosure by celebrity Davina McCall, concerning the detection of a colloid cyst in her brain during a routine screening, has drawn attention to the ability of such scans to identify minor abnormalities. However, Prof Jenkins cautioned that while it is often tempting to link symptoms like headaches and dizziness to these abnormalities, this correlation is not always accurate. He stated: “Unfortunately – or perhaps fortunately – medicine doesn’t work that way. “Some of these abnormalities are quite common, but rarely cause any problems. “For a link to be made with a scan finding, and for surgery to be proposed, there has to be a plausible mechanism for symptoms to be produced and a reasonable expectation that the symptoms will be resolved by surgery. “And surgery is, of course, not without risks. For any surgery, the risk of operating has to be less than the risk of not operating.” He further explained that symptoms from pineal cysts can arise if the cyst’s size is sufficient to impede the flow of cerebrospinal fluid, which is continuously generated by the brain to bathe and support it. He added: “In this case, pressure inside the head can rise, causing headache and very occasionally more serious problems. “By and large surgeons will not offer surgery if this is not the case. “But in the case of cysts of the pineal gland, there is a large amount of information on the web which prompts patients to seek surgery for minor and often unrelated symptoms. “Some surgeons are prepared to offer an operation and there the controversy starts, because surgery for these deep-seated cysts is not without significant risks.” Currently, there are no intentions to provide this surgery to NHS patients. Follow BBC Bristol on Facebook, X and Instagram. Story ideas can be sent via email or WhatsApp at 0800 313 4630. Copyright 2024 BBC. All rights reserved. The BBC bears no responsibility for the content found on external sites. Information regarding their external linking approach is available.