Can a controversial new treatment for multiple sclerosis offer relief?
A new treatment is giving hope to MS sufferers such as Mark Walker. So why can’t he get it in Britain? Liz Hunt reports
By Liz Hunt
Published: 7:00AM BST 12 Jul 2010
Mark Walker Photo: JOHN LAWRENCE Mark Walker is what the NHS calls an “expert patient”. He’s someone who knows all there is to know about the disease that has shadowed his existence on and off, for nearly 20 years, forcing him to give up the high-flying job he adored, and curtailing an active life. Walker asks difficult questions of doctors, expects candid answers, and pursues new research doggedly.
Before our meeting at the pretty bungalow on the outskirts of Oxford where he lives with his wife, Natasha, he provided me with a detailed record of the onset of his multiple sclerosis (MS): from the first signs of a problem (double vision in December 1991) through putative diagnoses (myasthenia gravis and a brain tumour) and accumulating symptoms (numbness, balance and bladder problems) to definitive diagnosis in 2000. Each treatment tried and its result are documented meticulously, as you would expect from someone who qualified originally as a pharmacist.
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JK Rowling quits as patron for charityToday, at 51, the former IBM management consultant has severely impaired mobility on his right side. He relies on a walking aid known as a Musmate and trekking poles. He knows what, in all probability, lies ahead – a life of increasing debilitation and limitation. It is this glimpse of the future that lies behind his decision – a “rational and considered one” – to go to Athens for tests and, possibly, treatment based on a controversial new theory about the cause of MS.
Walker is frustrated, however, that he must seek help abroad and, given that he lives close to two world-renowned MS centres at the John Radcliffe and the Nuffield hospitals, angry at the lack of support from MS experts here in exploring new approaches.
“Yes, I am desperate. Two years ago I was living in a three-storey townhouse in the centre of Oxford. Now, I’m living in a bungalow because I can’t do stairs very well. Ten years ago, I was managing a team of 20 people in Rome. Now, my life is all about managing my disease.
''In the 21st century, patients like me, who are well informed about their progressively disabling disease, should be allowed to choose private diagnostic tests and treatment for themselves. And health-care professionals should surely be helping patients’ freedom of choice.”
MS is a degenerative disease of the nervous system affecting 100,000 people, most of them young adults, in the UK. It is believed to be autoimmune in origin, triggered by genetic or environmental factors (or a combination of them) that cause immune cells to cross the blood/brain barrier (which keeps blood and cerebrospinal fluid separate) to attack the fatty, white myelin sheath that surrounds and insulates nerves in the brain and spinal chord.
Symptoms vary widely, as does the severity of the disease. In some, it progresses relentlessly. Other patients suffer the relapsing and remitting form – periods of relative good health interspersed with flare-ups and neurological deterioration. There are several therapeutic regimens of varying efficacy, including antibiotics, steroids, and immuno-modulator drugs.
Now, an Italian surgeon, Professor Paolo Zamboni, director of the Centre for Vascular Diseases at the University of Ferrara, is urging a radical rethink on MS. What began as a labour of love for Zamboni could, he claims, “revolutionise” management of the disease.
In 2005, Zamboni’s wife Elena was diagnosed with MS and he embarked on a mission to find out everything about it, from poring over medical literature dating back 100 years or more, to using state-of-the-art body-imaging techniques.
His conclusion was that this wasn’t only an autoimmune disease, but also a vascular one, caused by restricted, blocked, malformed or twisted veins in the trunk and neck. A small study showed that 90 per cent of his patients had venous obstruction. He named the condition chronic cerebrospinal venous insufficiency (CCSVI) and went further, postulating that an excess of iron, which causes inflammation and cell death, was responsible for tipping the immune system out of balance, resulting in MS symptoms.
For a vascular surgeon, the only response to restricted veins is to unblock – or de-stenose – them so that healthy blood-flow can resume. (The procedure, known as venoplasty, is similar to angioplasty, in which a balloon is inserted into an artery supplying the heart and inflated to remove a blockage.) The effect in this case, it is claimed, was a dramatic alleviation of symptoms in Zamboni’s wife and in subsequent patients he treated.
News of Zamboni’s approach spread among the MS community, initially by word of mouth, and has accelerated rapidly, via chatrooms and websites, as access to the internet has grown. Vascular surgeons in private clinics in Poland, Bulgaria, Greece, Germany, Belgium, the US and India are now offering diagnostic tests to confirm the presence of stenosed veins, and surgery to unblock them, with waiting lists growing by the day. Anecdotal reports suggest that treatment stops relapses in some patients, and eases symptoms and halts the disease’s progression in others.
It was in October last year that Walker began his own research, drawing on the limited scientific literature and anecdotal reports on the web. He was sceptical, at first, and questioned Zamboni’s iron hypothesis, but he was open to the possibility that restricted veins may be a factor in MS.
A diagnosis, then, was his first objective and he assumed that it would not be a problem arranging the test known as colour doppler sonography. He found an interventional radiologist (who worked at the Radcliffe and in private practice) familiar with Zamboni’s work and willing to help. He was also a private patient, happy to pay for the test and surgery if restricted veins were confirmed.
However, the test was prevented by neurologists at the Radcliffe on the grounds that it was not ethical or prudent because of doubts about Zamboni’s work, which has yet to be formally approved by clinical trials.
Surgery for CCSVI has had some negative publicity, Walker acknowledges. The MS “establishment” (that is, neurologists) has been riled in particular by Zamboni’s description of his procedure as the “liberation treatment”. In addition, a woman in California died from a stroke after stents (small metal tubes used to keep veins open by a minority of vascular surgeons, but not Zamboni) were inserted in her veins to maintain blood flow following venoplasty. Walker points out there was a familial history of stroke and she was also on the anti-coagulant warfarin, which is a further risk factor. Another patient had open heart surgery to remove a stent that had migrated to the heart.
“Out of 1,000 or so procedures so far, it is just two cases,” he says. Both are a cause for concern, yes, but not for the hysteria neurologists have generated. Walker believes a “turf war” is under way between neurologists here who believe they “own” MS, and radiologists and vascular surgeons who may have something to contribute to its management. Patients are being caught in the crossfire.
“Neurologists have been treating MS with powerful drugs for decades. Despite this, many patients suffer continued progression of their disease. Others give up the drugs because of side-effects. Treating any CCSVI symptoms is worth a try for many people.’’
And Zamboni is not setting himself up in opposition to conventional treatment, Walker adds. “He advises patients to continue with their drug therapy.”
Having satisfied himself that the risks were minimal, and opted for balloon venoplasty rather than the stent procedure, Walker sought the advice of other MS sufferers in finding a clinic and a surgeon in whom he had confidence. He is lucky, he says, because he can afford the £5,000 fee (plus travel costs). Other British patients cannot and he is angry that they must wait, while their health worsens, for research to be done before neurologists even consider it as an option. The MS Society here has yet to allocate funds to studies, in contrast to MS societies in America and Canada, which last month committed $2.4 million (£1.6 million) to exploring the link between restricted veins and MS. A study at Buffalo University, New York, involving 1,700 patients (and controls), is also in progress.
“Medicine is practised in silos here,” says Walker. “I want doctors to start talking about this. If I could find something to stop my progression, I’d be happy. If I could get any relief from symptoms, I’d be happy. The cost is irrelevant. I know I’m taking a risk, but it’s my money – £7,000 won’t buy you a lot of adaptation [to accommodate disability] in a house, so why wouldn’t I want to try this?”
Two weeks ago, Mark Walker saw consultant vascular surgeon Constantinos Kartkaletsis at a hospital in Athens. He diagnosed four “restricted” veins which were then cleared using balloon venoplasty. The Telegraph will update readers on his progress in six months.