MS surgical treatment coming to Canada

Discussion in 'The Watercooler' started by Mattsmom277, Jun 29, 2011.

  1. Mattsmom277

    Mattsmom277 Active Member

    Many of you may have heard of a somewhat controversial surgical procedure for MS that is available in some countries. It is basically a process of performing an angioplasty procedure on a blocked vein in the neck and it is becoming a more wide spread treatment. Although for me it is going to take more research and convincing to consider going under the knife in such a potentially risky procedure, and it doesn't help everyone either, I'm very excited to have read today that the Canadian government announced they are opening up to option within Canada. Initially it is to be a research trial, but in a few years if the risks vs benefits ratio seems worth it, and the results show enough are helped by the procedure, it will be available to all who are considered candidates. I have no intention of getting my neck checked for blockage unless I make a decision to have the procedure done, and I figure its going to take quite a few years of watching results myself to decide to do it or not to do it if I am a candidate. However I have to say that I'm thrilled that my government is going to begin to allow citizens to have this done here at home. I know of many families who travel internationally at great expense to have it done, and one man had a complication that resulted in his death as it developed after his return to Canada and there was no time to fly him back to the surgeon out of country to treat the complication. It also shouldn't be costing people tens of thousands of dollars to travel for this if it is a viable treatment, especially in a country where our tax dollars pay for our universal health care.

    On a related (sort of) note, there are currently very promising trials for a stem cell transplant treatment that are underway right here in my province a few hours away. They have been ongoing for some time so I would think in the next year or so the outcome of the long term study should be known and perhaps this treatment too will open up to us all here in this country. I did a lot of reading and nearly submitted my name to be considered for the study but decided against it and prefered to wait for more information and results of the study. So far though from what I hear, a majority of patients see not only a complete remission of their disease process but a side effect that none of the scientists and doctors had any idea would occur is a large number of patients actually having their lesions/plaques heal and the myelin sheath in the brain restore itself to a healthy undamaged state. Very promising although it is a intense treatment requiring creating your own stem cells for transplant, then intense chemo to strip your immune system before transplanting your newly grown stem cells into your body.

    This is one of the most fascinating periods in medicine, our lifetimes. So many advancements in so many diseases! There is even medication and treatment right now that is changing HIV positive patients into HIV negative patients! I never would have thought we'd see that in our lifetime. It is all enough to give me a hope that since I'm fairly young, I might have a chance yet to have a quality of life back, have a career again and pursue those dreams, ride a bike again, walk more than a few blocks again, exercise, sleep without pain, and put this all behind me. Hope is a beautiful thing!
  2. Suz

    Suz (the future) MRS. GERE

    M- do you have any links to these kinds of treatments? I have a dear friend who is now wheelchair-bound from MS and I'd love to pass them along.

  3. Mattsmom277

    Mattsmom277 Active Member

    Hi Suz. There is a huge surge in research and promising approaches in regenerative medicine and MS research is benefiting hugely with each advance this particular field of research makes.

    The treatment that involves angioplasty has a slang type name of "Liberation Therapy" (as in liberate the blockage in the vein). Its actual name is chronic cerebrospinal venous insufficiency (CCSVI). Any google search will produce all manner of medical information and patient stories, blogs etc. There is a website I haven't read much of but might be a good start. This is the newer of the treatments out there and has much controversy surrounding it, but in some patients is showing promising results. I don't know for sure how I feel about this type of treatment and I guess it's something I'd need to highly research and see long term results in current patients who give it a shot. This has a high risk with it, thus for me anyhow, I would consider if continued studies show it to have proven results over a span of time and if my physical condition was deteriorating rapidly thus making the risks worth the potential benefits.

    Although a much smaller study here in Canada, the stem cell transplant from what I hear has been done with larger numbers in studies in other countries. From what I've read and heard on the news etc the center doing this research study in Ottawa Ontario Canada is small in scale as a initial trial, but the results are quite remarkable as I mentioned in my first post. Basically, you take a series of injections to boost your bodies production of stem cells. These injections do cause quite a lot of bone pain and have side effects (but do go away when treatment is completed, but one must know going into this entire process it is a long, physically demanding and difficult process that is not to be taken lightly). Next a surgical procedure is done to harvest the stem cells. They are then "cleaned" of the elements that cause disease activity etc. Next comes a very aggressive series of various chemotherapy treatments where you must remain inpatient for several weeks. They take your immune system to absolutely non existent to ensure all of your own cells are destroyed at which point they transfuse your cleaned and healthy stem cells into your system. The body then begins a process of replenishing its stem cells, duplicating themselves and spreading throughout the body and repairing the immune system and whatnot. When the entire process is complete, the body no longer has disease carrying cells in it and healthy ones are surging through the body. It was after initial patients being treated and during follow up that it was discovered that the process also causes regeneration of the damaged myelin sheaths within the brain and spinal system which was never a thought in the doctors and researchers minds and apparently they were shocked to see this occurring but what a wonderful shock! Although the study is small in number of patients, all patients have shown no progression or recurrence of MS attacks/relapses, along with the marked improvement in their myelin and healing of lesions. I have a bookmarked blog for a couple who are documenting the husbands journey through this research program and as of today he is showing considerable improvement after only 6 months following his transplant. Another young woman who had it done several years back as part of this study, flew across the country to stay in Ottawa and have this treatment. Her family watched this young woman (very early 20's I believe, the youngest in the study) get on the plane with a walker and severe disability. Several months later when they went to pick her up from the airport when she was able to return home, she was walking on her own with a huge grin and it was night and day for her. The blog of the couple is : . They tend to be rather upbeat yet also honest. They speak openly and don't hide the pain involved in the treatment yet it is not at all depressing, rather it is filled with hope. And his improvements are marked, and one wouldn't expect his level of improvement in only 6 months post transplant. He still has a way to go but he seems well on his way.

    I hope your friend finds the 2 projects interesting and uplifting. There is hope and they are getting closer and closer. Quite honestly, I would do the stem cell transplant tomorrow if it was available to me. I'm hoping it goes mainstream soon here since the study started 10 years ago and the results are I believe better than anybody expected. The process does sound trying and quite awful actually, but 4-6 months of misery in return for gaining my quality of life back for me is well worth it. I am so fundamentally different as a person than even 3-4 years ago. My limitations increase and there is so much I can no longer do. They say there is a increased risk in older age of malignancy but I figure I'd rather cancer in my 70's potentially in return for 30 years living MS symptom free.