Scotland’s
community of 10,000 multiple sclerosis sufferers will be focused
intently on a hotel in Clydebank this weekend, where the potential of a
controversial new treatment will be debated by clinical experts.Specialists from Poland, Canada, Bulgaria, Jordan and the UK will come together to
discuss the theories of Dr Paulo Zamboni, an Italian vascular surgeon,
who claims that the symptoms of MS can be treated by clearing the
blocked veins which cause toxic build-ups in the brain.
Already, dozens of Scots with MS have travelled to eastern Europe to be treated
for Chronic Cerebro-Spinal Venous Insufficiency (CCSVI), which involves
balloon angioplasties or stents being fitted into the jugular and
azygos veins in the neck.
The procedure to tackle CCSVI is the most talked-about MS regimen in recent years,
and is already a multi-million-pound industry with treatments costing
around £7000. Now, a group of doctors from the fields of vascular,
neurological and radiological medicine will meet in Glasgow to discuss
Dr Zamboni’s theories.
But does CCSVI work? Six months ago, Barry McArthur, 29, from Paisley, stood on the
steps of his Katowice hotel the morning after his procedure and
announced to the world in an exhilarated voice he felt “a million times
better”. His dizziness had gone, he could stand upright unaided for the
first time in months and his speech was no longer slurred.
Stephen Law, 47, of Hamilton, was “almost suicidal” before he travelled to
Poland, due to the extreme exhaustion he suffered all day and every day
and his incredibly poor quality of life. In the weeks after the
procedure, however, he felt so well he could clock up 14 kilometres at a
time on his stationary exercise bike.
The same effects were heralded by others who had gone through the CCSVI
operation in Poland. Train driver Kevin Quinn, from Glasgow, was
“totally energised” after his angioplasties. He could walk greater
distances and his eyesight and memory improved. Glasgow-born radio
presenter “Tiger” Tim Stevens felt a warmth return to his feet for the
first time in years. The spasms in his left leg abated. He felt
“wonderful”. Meanwhile, a Californian schoolteacher, Deegie Phelps, 69,
threw down her crutches and walked unaided, in a scene straight out of
an evangelical church healing
Six months on, however, the reports are disheartening. Barry McArthur has
returned to his wheelchair. Stephen Law has lost his new burst of energy
and is tired again and, while his cramps are not so severe, they have
returned. Kevin Quinn has also regressed. “I’m still working as a train
driver but I’ve lost the energy I had. I believe the balloons I had
inserted in my veins have collapsed and I’m back to square one.”
Tim Stevens has since returned to Poland for a second procedure. The
balloon angioplasty he’d had carried out on the left side of his chest
had collapsed and he had a stent inserted. Tim’s voice is again slurred,
however, and he still can’t walk unaided. “I tried to climb up a single
step the other day,” he said. “My brain thought it could but the leg
told it otherwise.”
But why have so many of those treated later regressed? Dr Tomasz Ludyga, of the
Euromedic Clinic in Katowice, who carried out the Scots’ procedures,
offers an explanation.
“We can’t explain this entirely but we think when there is a blocked circulation
some substances are secreted in the brain to protect it, which results
in damage.”
He added: What we are looking at is a substance called Endoterin 1 and its levels before the
procedure and after. After the procedure, the veinous obstructions are
cleared and we think these substances disappear. And we can get some
initial improvement in the body functions such as headaches going, feet
warming, improved retina, balance improving.
“But if a patient, for example, had a disease for 20 years or more then you
can’t expect them to be cured immediately. The damage to the neurons in
the brain and the spinal cord means that the restoration could take
several years. The feeling of the neurons has just started.”
Dr Ludyga added that CCSVI was not a cure. Nor could he offer categorical
explanations for the initial successes and the subsequent regressions.
Tim Stevens puts the procedure in perspective. “I think we have to
appreciate we are all guinea pigs at the moment. No-one knows why CCSVI
works to a degree for some and not at all for others. Doctors are still
putting the pieces together.”
What pieces seem to fit? MS sufferers and doctors working on CCSVI share the
growing belief that MS is not a single illness but a collection of
symptoms. But the CCSVI procedures’ initial success at least indicates
that venal malfunction is the cause of some MS symptoms.
Deegie Phelps’s later experience throws additional light on the condition.
After her regression, she had another vein checked out for blockage,
this time the iliac vein in her hip. She was discovered to have
May-Thurner’s Syndrome, whereby a vein was being compressed by the right
iliac artery. She had a stent put in place. “It’s been three months,
now, and the veins that have been stented have stayed open. I have lots
of energy still.”
If MS is not a single illness but an umbrella label for varying symptoms, Caroline Stevens, a
dietician who has researched her husband’s condition extensively over
the past five years, believes that the method of diagnosis is hugely
important.
“The problem with CCSVI, as I see it, is that those with MS have to be scanned properly. But it’s
complex. Some doctors use a Doppler imaging machine to determine if
veins are blocked, but they don’t reveal blocked veins in all patients.
Those thinking of undergoing CCSVI should make sure they are scanned
properly.
“What people thinking about undergoing CCSVI should consider is that balloon angioplasties can
collapse, which means being re-scanned and a return to Poland to repeat
the process, perhaps having a stent fitted. But stents can be
problematic. You have to take drugs to prevent the body reacting to
them.” Stephen Law, however, says he doesn’t regret undergoing CCSVI. “I
don’t have pain any more. I have the fatigue again, though, and I wish
there was more follow-up from Poland but at least the research is moving
in the right direction.”
Dr Doug Brown, head of biomedical research for the MS Society, said: “We believe that
CCSVI is a very interesting avenue of research but there is currently
not enough evidence to draw firm conclusions about whether treatment for
CCSVI is safe or effective for people with MS.
“We are collaborating with other MS societies across the world to speed up research into studying the link between CCSVI and MS.
“As with any unproven treatment, we do not recommend that people seek this outside of properly regulated clinical trials.”
CCSVI – The Way Forward, Beardmore Hotel and Conference Centre, Clydebank, October 29 and 30.
http://www.heraldscotland.com/life-style/real-lives/calling-the-ms-detectives-1.1063560