Last November, an Italian doctor by the name of Paolo Zamboni gained major press with his findings about multiple sclerosis and the Liberation Treatment. His findings concluded that MS is likely not an autoimmune disease as originally suspected, but rather caused by a condition called chronic cerebrospinal venous insufficiency (CCSVI). CCSVI is a condition in which blood flow from the body's central nervous system is impeded. It has been suggested that CCSVI causes reflux of blood flow and can alter the blood-brain barrier . Additionally, CCSVI has been linked to blockages of the jugular vein and the vein that lies to the right of the spine. These blockages have been blamed for a build-up of iron around the cerebral veins. In Dr. Zamboni's study, every patient treated showed evidence of CCSVI in screening and there was no report of healthy subjects showing CCSVI.
Dr. Zamboni, and several doctors around the world, have reported great success performing angioplasties to restore the blood flow to and from the nervous system in treating MS. These findings have sparked a sense of hope within the MS community that has never existed before. This revelation has also created a sense of desperation and with that an out-pouring of anger, resentment and conspiracy theories directed at the MS societies, the neurological community and governments in Canada and the US.
I, having MS myself, understand the desperation for a cure. I understand the fear and emotional turmoil associated with this disease, not to mention the physical agony that it can inflict. I, myself, am in fairly good health with only one or two flair-ups per year usually limited to weakness, numbness and neuropathic pain. As a result of relapses, I have been completely paralyzed on one side of my body and thankfully recovered almost fully. I have also suffered blindness in my right eye, which has since worked itself out. I understand the impact that this disease has on people's lives. I am not suggesting on any terms that people should not seek this treatment if they feel that it is right for them. I am not a doctor, nor a scientist and this piece of writing is purely my opinion based on what I know. I do not claim to have all of the facts, no one does, but I can't help being sceptical about treating CCSVI to cure MS.
To be totally honest, I'm confused!
Since Dr. Zamboni's discovery, studies have been publicized and many independent studies have been conducted to further research his hypothesis. The National MS Society (US) and the MS Society of Canada have collaborated on funding seven research studies, to my knowledge these studies have not yet concluded. The University at Buffalo conducted a study of roughly 500 patients and found that a little over half of them had narrowing in their veins, it also found that around 22 percent of the healthy subjects had narrowing as well. As far as I can tell this isn't the first set of results to conclude that venous obstructions of this kind are not limited to people with MS. To me, this is evidence that people with MS are more prone to venous obstructions; but it raises questions. (1)Why? Is it the CCSVI that causes MS, or is CCSVI an aggravator? (2) If people who are free of MS have venous obstructions associated with CCSVI, doesn't it also suggest that CCSVI may not be the cause of MS? (3) Is it perhaps one of many factors that causes or exacerbates MS? Since the triggers and progression of each patient's disease are unique and unpredictable, then is it not possible that the Liberation Treatment isn't a solution for everyone?
I have found in my quest for information that Dr.Zamboni is not the first to take an interest in the effects of blood flow to the brain one Tracy J. Putnam MD reported in 1934 -35 the findings of a study which suggested, as I understand it, that there is a correlation between venous obstructions and myelin plaques.
There is another piece of this puzzle. Money!
It isn't a secret that many researchers, employees of MS societies, neurologists specializing in MS and others stand to lose money, funding and jobs if it turns out that CCSVI is indeed the cause and angioplasty the cure for MS. Biogen Idec, the maker of Avonex and Tysabri stands to lose millions if not billions of dollars if CCSVI removes the need for recurring treatments.
What I find particularly mind blowing about this situation is that people are so desperate to have the surgery that they are willing to pay thousands of dollars –incurring debt through loans and payment plans- and potentially risk their health to have the procedure done both in the U.S. and overseas. Vascular and thoracic surgeons, along with independent diagnostic clinics and radiologists stand to benefit from this situation financially and I worry that there are no checks in place to ensure hopeful patients aren’t taken advantage of.
I've heard of neurologists at MS clinics being completely against the procedure, citing that there are many dangers associated with the treatment and likely no benefit to be had. I've seen the results of the studies and heard the stories of pioneering patients who have had major successes with the treatment. I've heard of surgeons saying that there is a definite benefit to having the surgery and patients should have it. It seems like the groups who stand to lose are fighting against the treatment while those who stand to gain are fighting for it.
So who is in the middle confused and without answers? US! As of the time I am writing this, Canadian patients with MS are being denied access to this surgery at home. Provinces haven't alotted money in their annual healthcare budgets for angioplasty to support the thousands of Canadians who are seeking the treatment. And why can't we pay cash at home when other countries are happy to take our money? Well that's a whole new can of worms labelled two-tier health care. It's a tricky situation.
Getting angry and posting nasty messages on MS society pages, blogs and forums isn't the answer. This isn't a black and white situation. There are a lot of emotions involved and many angles to be evaluated. Here is my take on the situation:
1.Patience. The MS community has proven themselves to be persistent and resourceful in getting the treatments needed so far. So keep the faith. The best things are worth waiting for.
2. Get involved in research. Enrol in one of the studies, or donate to fund research if you’re interested in helping to sort all of this out.
3. There is no neutral third party in this situation. The government isn't in the practice of stepping in to analyze data in these situations. Though in this case it would likely be in their best interest to do so. MS costs individual provinces millions, if not billions, of dollars per year in drug therapies, ER visits, physical therapies and diagnostics.
I would like to see a team of thoracic/ vascular surgeons and neurologists work together to formulate and conduct a study.
Researchers, doctors and patients need to work together on this. It is time to put egos and emotions aside and work together for the greater good. Yes, MS Societies and neurologists are being slow to accept the Liberation Treatment. There is much more research required to understand the correlation between CCSVI and MS.
On that note, I will say I am hopeful and intrigued by this development. I have a requisition for a doppler ultrasound of my jugular veins and I’m interested in discovering the outcome, but I don’t think I’ll be rushing out to get the surgery just yet.
Dr. Zamboni, and several doctors around the world, have reported great success performing angioplasties to restore the blood flow to and from the nervous system in treating MS. These findings have sparked a sense of hope within the MS community that has never existed before. This revelation has also created a sense of desperation and with that an out-pouring of anger, resentment and conspiracy theories directed at the MS societies, the neurological community and governments in Canada and the US.
I, having MS myself, understand the desperation for a cure. I understand the fear and emotional turmoil associated with this disease, not to mention the physical agony that it can inflict. I, myself, am in fairly good health with only one or two flair-ups per year usually limited to weakness, numbness and neuropathic pain. As a result of relapses, I have been completely paralyzed on one side of my body and thankfully recovered almost fully. I have also suffered blindness in my right eye, which has since worked itself out. I understand the impact that this disease has on people's lives. I am not suggesting on any terms that people should not seek this treatment if they feel that it is right for them. I am not a doctor, nor a scientist and this piece of writing is purely my opinion based on what I know. I do not claim to have all of the facts, no one does, but I can't help being sceptical about treating CCSVI to cure MS.
To be totally honest, I'm confused!
Since Dr. Zamboni's discovery, studies have been publicized and many independent studies have been conducted to further research his hypothesis. The National MS Society (US) and the MS Society of Canada have collaborated on funding seven research studies, to my knowledge these studies have not yet concluded. The University at Buffalo conducted a study of roughly 500 patients and found that a little over half of them had narrowing in their veins, it also found that around 22 percent of the healthy subjects had narrowing as well. As far as I can tell this isn't the first set of results to conclude that venous obstructions of this kind are not limited to people with MS. To me, this is evidence that people with MS are more prone to venous obstructions; but it raises questions. (1)Why? Is it the CCSVI that causes MS, or is CCSVI an aggravator? (2) If people who are free of MS have venous obstructions associated with CCSVI, doesn't it also suggest that CCSVI may not be the cause of MS? (3) Is it perhaps one of many factors that causes or exacerbates MS? Since the triggers and progression of each patient's disease are unique and unpredictable, then is it not possible that the Liberation Treatment isn't a solution for everyone?
I have found in my quest for information that Dr.Zamboni is not the first to take an interest in the effects of blood flow to the brain one Tracy J. Putnam MD reported in 1934 -35 the findings of a study which suggested, as I understand it, that there is a correlation between venous obstructions and myelin plaques.
There is another piece of this puzzle. Money!
It isn't a secret that many researchers, employees of MS societies, neurologists specializing in MS and others stand to lose money, funding and jobs if it turns out that CCSVI is indeed the cause and angioplasty the cure for MS. Biogen Idec, the maker of Avonex and Tysabri stands to lose millions if not billions of dollars if CCSVI removes the need for recurring treatments.
What I find particularly mind blowing about this situation is that people are so desperate to have the surgery that they are willing to pay thousands of dollars –incurring debt through loans and payment plans- and potentially risk their health to have the procedure done both in the U.S. and overseas. Vascular and thoracic surgeons, along with independent diagnostic clinics and radiologists stand to benefit from this situation financially and I worry that there are no checks in place to ensure hopeful patients aren’t taken advantage of.
I've heard of neurologists at MS clinics being completely against the procedure, citing that there are many dangers associated with the treatment and likely no benefit to be had. I've seen the results of the studies and heard the stories of pioneering patients who have had major successes with the treatment. I've heard of surgeons saying that there is a definite benefit to having the surgery and patients should have it. It seems like the groups who stand to lose are fighting against the treatment while those who stand to gain are fighting for it.
So who is in the middle confused and without answers? US! As of the time I am writing this, Canadian patients with MS are being denied access to this surgery at home. Provinces haven't alotted money in their annual healthcare budgets for angioplasty to support the thousands of Canadians who are seeking the treatment. And why can't we pay cash at home when other countries are happy to take our money? Well that's a whole new can of worms labelled two-tier health care. It's a tricky situation.
Getting angry and posting nasty messages on MS society pages, blogs and forums isn't the answer. This isn't a black and white situation. There are a lot of emotions involved and many angles to be evaluated. Here is my take on the situation:
1.Patience. The MS community has proven themselves to be persistent and resourceful in getting the treatments needed so far. So keep the faith. The best things are worth waiting for.
2. Get involved in research. Enrol in one of the studies, or donate to fund research if you’re interested in helping to sort all of this out.
3. There is no neutral third party in this situation. The government isn't in the practice of stepping in to analyze data in these situations. Though in this case it would likely be in their best interest to do so. MS costs individual provinces millions, if not billions, of dollars per year in drug therapies, ER visits, physical therapies and diagnostics.
I would like to see a team of thoracic/ vascular surgeons and neurologists work together to formulate and conduct a study.
Researchers, doctors and patients need to work together on this. It is time to put egos and emotions aside and work together for the greater good. Yes, MS Societies and neurologists are being slow to accept the Liberation Treatment. There is much more research required to understand the correlation between CCSVI and MS.
On that note, I will say I am hopeful and intrigued by this development. I have a requisition for a doppler ultrasound of my jugular veins and I’m interested in discovering the outcome, but I don’t think I’ll be rushing out to get the surgery just yet.
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