Gloucestershire MS sufferer calls for pioneering treatment

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Monday, March 15, 2010
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This is Gloucestershire

MULTIPLE sclerosis sufferer Stefan Cambridge is calling for a pioneering treatment to be available in the UK.

As a child, the now 34-year-old spent years caring for his father who had MS before seeing him die. Just five years later he received the devastating news he too had the disease.

Stefan, who uses a wheelchair and walking sticks, recently travelled to Poland for surgery which he says has halted the progression of the debilitating condition which affects all kinds of nerve function.

He is now calling for the pioneering surgery to be made available on the NHS.

The dad-of-one, who has a progressive form of the condition, said: "I lost my dad to MS at a young age and I know what this illness can do.

"For someone like me not to progress is like a miracle. For people who have the procedure done early on before the damage starts then it's more of a cure."

Stefan, whose father died from MS at the age of 42, paid £4,000 to have an angioplasty performed on his jugular vein to widen it.

The surgery, which is not available on the NHS in the UK, follows initial studies abroad which suggest MS is linked to a narrowing in the veins which drain the spine and brain.

It is not known if this condition, known as chronic cerebrospinal venous insufficiency (CCSVI), is a cause of MS but researchers are reported to have said it is at least an important association.

Some patients who have had similar procedures have even reported an improvement in symptoms.

Stefan, from Bishop's Cleeve, returned from Poland in January and believes the surgery he had has stopped his MS getting worse. The former Bournside School pupil found out about the studies on internet MS forums.

Stefan and his sister Gillian cared for their father until his death in 2003. There is no cure for MS but it has not been shown to be hereditary in medical studies, so Stefan was shocked and devastated when he was diagnosed.

"I just couldn't believe it when I got diagnosed. I have done everything I possibly can to try to get better," he said.

Opinion is divided in the medical world about the treatment Stefan received.

Researchers at Stanford University in America are reported to have halted treatments after one patient died from a brain haemorrhage following a procedure and another required emergency open heart surgery after a jugular vein stent dislodged.

The MS Society says it is open to receiving grant applications to fund research into CCSVI within the UK.

Dr Doug Brown, biomedical research manager at the society, said: "The MS Society has followed reports on CCSVI closely but we need to see more evidence before we can make any firm conclusions on whether CCSVI can cause MS or whether treating it would have any effect on MS. We would not advise people to seek unproven treatments outside of a properly controlled clinical trial."

A Department of Health spokesperson said: "The NHS is constantly expanding the range and types of treatments available and we are always interested to know about new and innovative treatments that will not only provide benefits for the patients but for the NHS as well.

"Surgery is not without risk and all new treatments must be examined for their effectiveness, safety and cost. We look forward to further research in this area."

A group is trying to get this treatment set up in the UK. Visit www.ms-ccsvi-uk.org/ for details.

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17 Comments

  • Profile image for This is Gloucestershire

    by LaVonne, USA

    Friday, June 11 2010, 8:56PM

    “I hope that everyone with MS no matter where they are are finally "liberated" to get this procedure done! I t is the only humane choice!”

  • Profile image for This is Gloucestershire

    by ed, glasgow

    Thursday, March 18 2010, 3:25PM

    “This has serious financial implications. We can't just hope it comes to Britain. We have to actively push for this. There is a sickening lack of urgency for studies into CCSVI. This makes me fear the worst & motives must be questioned.

    Thanks for highlighting this story in Gloucestershire. One article from my local newspaper got the attention of myself, and many others around me.

    Many cynical minds switch midstream as they dig deeper into CCSVI.

    Every tiny bit of exposure can only help awareness. The obvious implications to this should not be hidden.”

  • Profile image for This is Gloucestershire

    by helen willison, south wales uk

    Wednesday, March 17 2010, 11:52PM

    “I agree with stefan that this our only hope at the moment. my husband has had the scan in poland and we await date for op.. come on uk lets get with the programme”

  • Profile image for This is Gloucestershire

    by M.KAVANAGH, South Wales.

    Wednesday, March 17 2010, 1:44PM

    “I just can't wait for it to be available in Wales, i'll be the first in the queue!!!This should be compulsory for ALL MS sufferers!! Sod the professionals, Sod the drug companies,-they're only interests are making money!!! Treat the REAL PEOPLE, GIVE THEM SOME HOPE!!! FREE them from this soul & body destroying disease!!!”

  • Profile image for This is Gloucestershire

    by john cambouris, toronto

    Wednesday, March 17 2010, 2:32AM

    “does anyone know where i can get this test done here in toronto (doppler)”

  • Profile image for This is Gloucestershire

    by roy ashmeade, cheltenham

    Tuesday, March 16 2010, 9:07PM

    “I have sent you a email with the website of the Calgary Herald Canada telling you the story of a lady Michelle Zanni who is travelling to India for a opertion”

  • Profile image for This is Gloucestershire

    by Lizzy Wills, Northants

    Tuesday, March 16 2010, 11:05AM

    “Chris Fraize, what is "PP" and "SP"?
    I have the occasional MS episode, about once a year. Not progressive at all.”

  • Profile image for This is Gloucestershire

    by Kathy, Calgary, Canada

    Tuesday, March 16 2010, 2:37AM

    “Wow! I agree that we can't wait too many years, especially if the diagnosis is a number of years back. Here in Canada, there is a place in Montreal, where they have the Doppler Ultrasound, and the test by itself costs only $450.--.
    There is also a private clinic in Vancouver, but its much more costly, over $2000.-- for the test only. I'm certainly considering the action taking!”

  • Profile image for This is Gloucestershire

    by Bev Bentley, Vancouver Canada

    Monday, March 15 2010, 9:09PM

    “Brilliant!!! I'm so looking forward to my son getting the surgery soon. We do not have time to wait, period. Thank you for blazing the trail, as other 'warriors' are doing, for the rest of us.”

  • Profile image for This is Gloucestershire

    by Anonymous by Choice, Online

    Monday, March 15 2010, 7:51PM

    “I have no experience with the problems that Stefan has pointed out,although I have recently read that babies suffering from a stroke have been treated by flushing a fluid through their brains,with some success.
    Would this work for other brain illnesses?
    Maybe if research is jollied along there will be a home grown treatment to equal what is available now,in other countries.
    I wish all sufferers well and hope that relief is not too long showing up.”

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