I hope most of us went to the ECTRIMS website and watched the videos. Alot of info for all of us to absorb and I was especially interested in Dr. Jeffry's little blurb on the overall view of the opinion of the European Commitee on CCSVI. Pretty much says what I have believed from the start. CCSVI is a very expensive and in some cases, a short lived "aspirin" for MS. This procedure does not "cure" or slow the progression of the disease. Now let's hear from everyone who has had the procedure done and honestly tell us of their results.
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Here is a site that lists the abstracts of what was presented at ECTRIMS.
I was surprised by Dr. Jeffry's comments, seems like he only reported on the last abstract from F. Doepp, Berlin.
Nothing was said about any of the others.
http://ccsvinews.blogspot.com/2010/1...-update-1.html -
It seems that there is a conserted attempt to dismiss the Liberation Procedure as a treatment of MS. In what grounds is it being claimed to be an aspirin for MS patients? I suggest we read all the available data carefully. So please follow me:
1. The latest data suggests the 1/3 of patients showed significant improvement; 1/3 showed little improvement; and 1/3 showed no improvement at all.
2. If we have to analyse this word by word then we have to conclude that the procedure is 100% successful. Why? Because the aim of the procedure is to stop progression addressing one of its possible causes (stenosis in jugulars and azigos veins). Any improvement in symptoms was at the start a welcomed bonus rather than the main goal of it. I think Dr.Zamboni and all those who pioneered the procedure were surprised to see improvements in so many patients and to this day can't fully explain it.
3. It happens that some of the patients not only do not improve but experience a worsening of symptoms. While it seems that for some the procedure did not work at all, for many of those it has been the case that the veins have restenosed and therefore they experienced a worsening of symptoms.
4. These cases do not mean that the procedure is a failure. They mean that it needs to be improved probably with the use of stents or larger balloons to keep the veins permanently open. If this is possible then we should at this stage be open minded and positive about the Liberation Procedure and not give up on it.
I am sorry if I am sounding too assertive about it but I do fear a retreat in the treatment and I feel we must not comply with whatever interests are backing it.
SpiffComment
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I watched all the videos, but I have advanced MS and they aren't really investigating helping us. It was interesting stuff, though!“The world breaks everyone, and afterward, some are strong at the broken places.” Ernest Hemingway
Diagnosed 1979Comment
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It may not be that researchers aren't interested in investigating helping with advanced MS. It may be more likely that, when there's a limited amount of research money available, the money and time are better spent on helping the 1) greatest number of people who are 2) the most likely to be helped. And right now, that's people with relapsing-remitting MS.Originally posted by jazzgirl View Post
Specific to CCSVI, it isn't that the researchers aren't interested in helping people with advanced MS. The problem is that, in advanced MS, the nerve tissue is degenerated or dead, and nothing regenerates dead nerve cells. Putting more blood into the nerve tissue by opening stenosed veins is not going to regenerate dead nerve cells and bring back lost function. Spending money and time trying to do something that's impossible isn't the best way to spend limited research funds. The CCSVI researchers can't be faulted because their technique isn't the right one for helping advanced MS.
Research into blood flow, cell infiltration, inflammation and demyelination aren't going to help advanced MS because, by the time the nerve cells are degenerated or dead, none of those are the problem anymore. The solution to cell death has to come from another area of research.
It may be that help for advanced MS doesn't come out of MS research, but out of more general research into repairing spinal cord injuries. There are many researchers interested in that, as there are in helping advanced MS. Researchers with organizations like the Christopher and Dana Reeve Foundation work every day to find a solution for CNS cell death, but there just isn't enough money for it yet.Comment
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I have not seen this video, but if (as justsayyes reports),Originally posted by korgc35 View Post
Dr Jeffry only reported on the Dr Doepp report, then Dr Jeffery is reporting on a 20 patient study which found no cases of CCSVI .....of course, they did not use the same testing protocol or testing methods....and Dr Doepp had issued negative statements before he did the study, so I don't believe Dr doepp approached this with an open mind
And Dr Jeffery ignored all of the other presentations that were available from Dr Zamboni, Dr Simka, etc.Comment
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To be fair, I want to add that Dr. Jeffries summarizes that the overwhelming majority of presentations suggest that there are not more venous abnormalities in MS patients than in the general population.
The Doepp report challenges the hypothesis that cerebral venous congestion plays a significant role in the pathogenesis of MS.
There is alot of information in the abstracts, I don't want to mislead anyone as far as what was reported.Comment
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CCSVI
Hmmm? Sounds like we are still split about this procedure!
Well I guess when someone offers $10,000.00 to $18,000.00 dollars to me to try this out maybe we'll give it a shot....until then my underfunded disability dollars will need to be spent on feeding myself!Comment
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Originally posted by Redwings View Post
Yep, well aware of everything you've written here, Redwings.
“The world breaks everyone, and afterward, some are strong at the broken places.” Ernest Hemingway
Diagnosed 1979Comment
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I would not dismiss ccsvi helping advanced MS, yes it may not provide symptom improvement but it might halt the progression.Comment
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My "progression" for many years has only been a combination of nerve degeneration and muscle atrophy. Stopping progression (much less improved function) requires nerve growth/repair. (Holding my breath on how CCSVI will do that starting now....)
As with many treatments/drugs, the use of medically ancient terms which pigeon hole MS patients into a few categories doesn't allow us to have productive discussions.Steve
sometimes you can't make it on your ownComment
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I agree, Steve.“The world breaks everyone, and afterward, some are strong at the broken places.” Ernest Hemingway
Diagnosed 1979Comment
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Ccsvi
My ms specialist said more research needs to be done. They have also found this problem with people with Parkinsons, Alzheimers. He does not think they can all be related. He believes MS is an autoimmune disease and that fact has been proven.
I am cautious about this anyway and will wait for more research. I too have an advanced case of ms with much scar tissue. But maybe they will find this does help some.
We have been told that everyones ms is different.
I look forward to hearing of people who have had it done for six or more months ago and still are seeing results.
Coral12
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