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Battle on

Published on July 22, 2010
Published on July 22, 2010
Steve Bartlett  RSS Feed

MS sufferer following through with human rights complaint

A man with multiple sclerosis (MS) is following through with his battle plan after being denied a procedure said to slow or correct the condition.

Topics :
Canadian and American MS Societies , Human Rights Commission , Eastern Health , Vancouver , Albany, New York

Mark Lane said Wednesday he was refused the treatment and he intends to file a human rights complaint against Eastern Health next week.

“I’m not stopping,” he said.

In a May article with The Telegram, Lane said health officials should prepare for battle if he was denied the procedure for a condition known as chronic cerebral spinal venous insufficiency (CCSVI).

An Italian doctor, Paolo Zamboni, believes MS can be treated by opening blocked neck veins to reverse CCSVI.

“I’m not stopping,” - Lane said.

He has used angioplasty — a common procedure — to do so. for numerous patients, including his wife.

The groundbreaking findings have prompted much debate and related research around the world.

And it’s naturally caught the attention of MS sufferers like Lane, who is in his mid-30s.

See Lane, page A2

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Comments

  • Username
    jlawco
    - July 26, 2010 at 15:11:39

    Hope it works out for you Mark, I am heading to Poland for this Procedure in September, I can't wait and the cocktail of Immuno-modifying drugs are doing nothing for MS sufferers. I want to be mobile and a contributer to Society and my Family for many years to come...

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  • Username
    jlawco
    - July 26, 2010 at 15:08:02

    Hope it works out for you Mark, I am heading to Poland for this Procedure in September, I can't wait and the cocktail of Immuno-modifying drugs are doing nothing for MS sufferers. I want to be mobile and a contributer to Society and my Family for many years to come...

    Submit a comment

  • Username
    Trent Byrne
    - July 23, 2010 at 09:28:26

    Keep up the fight Mr. Lane. I too have M.S for 9 years but unfortunately time is plays a huge factor. Therefore I will be travelling to Poland in August to have the simply procedure done there. Why don't the Government and Eastern Health and the M.S society understand something so simply. I guess like they say money makes the world go around and that to me is the issue.

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  • Username
    Cora Ward
    - July 22, 2010 at 21:18:21

    I am going to Poland for the ccsvi treatment in october. It will cost me about $15,000.00. I would not mind paying for my operation here in Canada, if they would even consider it. To think that if my husband had ccsvi, they would fix him but not me because i have MS. If I have a blockage in my neck, fix it, MS or not..

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  • Username
    Dagmar Lots
    - July 22, 2010 at 21:10:14

    I have had MS for 20 years and it has been a roller-coaster ride. I have had vascular problems , only detected in my legs, for 20 years and I have had 2 veins stripped (Pulled out). My leg veins are injected every other year to dry up superficial veins that have valves that are not working properly, the blood reroutes thru healthy veins. My legs could give me "deep vein thrombosis" which could give me heart problems and this is why Health Canada takes this seriously. Isn't it interesting how the heart trumps the brain. I think they are equally as important, yet, I guess the powers that be disagree.

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  • Username
    JOE
    - July 22, 2010 at 20:51:46

    I truly feel that this treatment is a major breakthough in unfolding the mysteries of MS. In my heart I feel as though MS is a symptom of a vascular condition known as CCSVI rather than a disease itself. The medical system has offered chemo theraphy, stem cell transplants, experimental drug therapy and brain surgery as a treatment. Why then not a safe and relatively invasive procedure such as angioplasty?

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  • Username
    Nick
    - July 22, 2010 at 14:57:24

    The vascular anomalies which characterize CCSVI are a recognized vascular condition. If Mr. Lane had it but not MS, he would be treated. It is pure discrimination. The purported research studies being put forward by the MS societies in Canada and the US will not evaluate benefit (which is the only reason treatment is being denied to MS patients), will take years, and will only delay treatment options. Delays in treatment mean additional brain damage to MS patients. That MSS of Canada is only spending $350K of its $35M annual budget on its research (which does nothing to further the demands of people with MS) strengthens the argument that the MSS of Canada is at least partially responsible for creating the controversy and discrimination. They have lost touch with their constituents.

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  • Username
    Kim
    - July 22, 2010 at 13:41:15

    I have been living with RRMS since 2003 and I am anxious to have the CCSVI testing and procedure. Every day that passes by makes a difference when you have MS. The people living with it every day know that it is a very difficult, unpredictable disease and we would try almost anything to stop the progression even in the short term. I am currently working full time but I am finding it more difficult with each passing day. If there's even a remote possiblity that this procedure can help people with MS maintain their present condition, keep working and enjoying life with their families I think it should be available in Canada even if we have to pay for it.

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  • Username
    McManus
    - July 22, 2010 at 12:52:49

    Good luck and God bless you Mr. Lane as you undertake your challenges of this disease and our inadequate medical system. You do what is best for you as it is your health and your life. Follow the example of Premier Williams and leave this Province to get the medical treatment you need. Help is out there.

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  • Username
    Jon
    - July 22, 2010 at 12:41:45

    Keep up the fight Mark. I believe a lot of MS sufferers would benefit from this treatment. Good luck.

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  • Username
    Trudy Veitch
    - July 22, 2010 at 12:33:20

    According to singularityhub.com, "Using Doppler ultrasound techniques and MRI scans, Dr. Zamboni found that 90% of MS patients had deformations or damage (called strictures) to the veins draining blood from the brain. Doctors have long noted that MS patients have higher levels of iron deposits in the brain. Zamboni proposes that these deposits are not a by-product, but a key cause of MS. By opening venous strictures, he believes that iron is able to be removed from the brain and spine. 65 patients were treated by Zamboni’s team and showed remarkable improvements. Active scleroses for the group dropped from 50% to 12%, and 73% of patients had no MS symptoms after two years. Mrs. Ravalli has gone more than three years without a MS relapse. I have many friends with MS, this needs to be tried on patients now!

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  • Username
    Peter
    - July 22, 2010 at 11:55:21

    The debate appears to have developed a chicken/egg paradox. Is CCVI a complication of MS(vascular nerves) or MS a complication of CCVI (neural ischemia)? Either way the procedure appears to treat the symptoms not the cause. However symptoms are the burden for the patient and the relief of suffering is the ambition of applied/clinical medicine?? Nevertheless surgery, while sophisticated in process, might be only an interim improvisation in medical strategy. Who is the braver......the surgeon, the patient, the family or the patient who endures waiting for the right diagnosis and right cure? Tough call.

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    • Username
      Vickie
      - July 22, 2010 at 15:38:56

      Please, please, please refrain from referring the procedure as an operation better yet they have asked us to refer to it as an angioplasty. They want us to call it what it is , so I guess people will recognize it and not turn away. Neuros and the powers that be like continue to call it controversry. Controversery????? Shame on them, they know that this practice has been around for years. And like I have said before we are not children and can make decisions for ourselves. Lets get moving.s4gn1

  • Username
    Steve
    - July 22, 2010 at 11:13:57

    My wife has relapsing-remitting MS and we discuss this topic nearly everyday. We have read mountains of research and testimonials and we feel that this could very well be a cure for MS is the future but right now we are holding off until there is more conclusive eveidence and studies done, and besides that it would cost thousands to have it done outside Canada, for something that may or may not work. Thankfully my wife's condition hasn't worsened since she was diagnosed in 2003. However, we think that Mr. Lane is correct when he says he's being discriminated against when he's being denied treatment for CCSVI. Lets say he was never diagnosed with MS but still found out he had CCSVI, would he still be denied?. Since the health guru's here in Canada keep saying that there's no conclusive evidence that CCSVI and MS are directly related, why can't he have this problem fixed? Like he said to the specialist, they need to seperate the two. Get the known problems fixed, CCSVI is a known. The relation to MS is the unknown. There should be absolutely no reason why an individual should be denied treatment for a known condition. Who cares about the MS, if it helps it then bonus but at least his vascular problems would be corrected. It's time for someone to wake up. If this were a family member of the health ministers do you think they'd still be denied or told not to go outside and get it done? Not a chance.

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