This Is MS Multiple Sclerosis Community: Knowledge & Support

I trust this hasn't been posted before?

Here is the link for the '2009 European Charcot Symposium' which met for the 3 day conference in Lisbon to discuss “A new treatment era in multiple sclerosis: options, challenges and risks”. http://multiple-sclerosis-research.blogspot.com/

Klaus Schmierer & Gavin Giovannoni report on CCSVI in a predictably negative way - see, in particular, the penultimate paragraph of the article. The concluding sentence is 'Without firm evidence from properly conducted clinical trials we would not recommend this therapy.

Well I view the evidence in a different way to Klaus & Gavin. I have made my own decision on the way forward and it certainly isn't to listen to the hopes and expectations of people who are not willing to look outside their own little boxes. Too many vested interests.....

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Nigel

oops - hadn't intended to post a new topic - pressed the wrong button!

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Nigel

acol... This is a good topic !

Thank you oc.

As an aside I have just read the 2 comments at the end of the article. This is the first comment:

Klaus Schmierer said...



The second person to pass comment gives a view which is closer to what I feel about the issue.

Negative coments about any new procedure invariably fail to take any account the real impact of MS on the lives of individuals or their families. If people had a real understanding of the suffering involved they would understand better why risks have to be balanced and managed.

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Nigel

Has there been two deaths? And again, Holly's death was not related to the surgery but I am sure they are including hers, but whats the second one?

I was just going to ask the same question about a second death and make the same comment about Holly.

When I was at Buffalo, they did say that they were worried about the early treatment going on and how a bad outcome could scuttle the theory before it had a chance to be proven. They would like to see controlled studies on the treatment side before it becomes mainstream.

I didn't know of either of these unfortunate deaths. However, it doesn't deter me from getting the procedure done. As many people have said - in any surgical procedure there are going to be risks. Perhaps someone with more knowledge can contribute on this point.

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Nigel

My neuro said he also heard there were 2 deaths and I had to set him straight that I was sure there was one. Maybe he heard it from the same source as these guys. The only person who would know the answer is Dr D

I look at it this way.

People die parachuting all the time but that wouldn't stop you jumping from a burning plane.

The risks of doing nothing far outweigh the small risk of the procedure.

Please remember, as far as we know (assuming there isn't another mystery death no one has heard about) there haven't been ANY deaths, newbies search for the thread on "Holly" - her death was an unfortunate happening in that it occurred after her surgery, but the only relation to her surgery might have been that the coumidin she was taking aggravated the real problem.

Oh man; Holly died 4 days after a stent procedure of a hemmorhagic stroke, a blood vessel broke and bled into her brain. She was flying home to Arizona and just went to sleep and never woke up.

She was taken to the hospital in Arizona, admitted and evaluated by THEIR neurologists and Dr Dake was contacted. He hopped a plane and flew right out to see her and consult with the doctors and family.

this is the important point direct from Holly's sister: The ARIZONA neurologist said this was UNRELATED to her stent procedure. Neuro's in AZ have no reason to lie to family about that.

only about 15% of strokes are hemmorhagic. Holly's coumadin level was therapeutic (2) and while it did not cause the stroke, it would have made it worse because the blood was thinner than it would have been.

I am getting tired of reading that this event, assuming they reference her death, was anything other than what it was. People who insist it HAD to have been related are just not acquainted with the facts and seem to enjoy a juicy tidbit....they just can't imagine it is possible that it was her time to go. This is one of the things that is often repeated on this forum : association is not cause.

Dr Dake learned from the event -Coach was not allowed to be treated until a (can't remember the type of vessel anomaly she had) was investigated first and shown to safely allow coumadin use.

If another person has passed away then I have no knowledge of that--
but I do know the facts on that one and they are as I describe.



Oh man I agree, it was almost to late for me to jump too

--with one caveat, newly diagnosed people have time to wait, and should, IMHO.

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

The bloggers strike again. I'd sure like to find out what Klause's source is for this quote. I cannot stand people that quote people on something of such paramount importance without providing a credible reference. Not directed at the post in this thread just Klause, but now the blog will be quoted as a source in and of itself. Disgusting.

I may not have known Holly that long, but I DO know that she would be in absolute bunches seeing her unfortunate demise being used as so much cannon fodder for those who have no idea what they are talking about.

Okay I'm gonna go write Klause now and try to find out his actual-factual source of info for his Buffalo quote.

Mark.

Nevermind I already emailed Dr. Zimadov not going to chase this around in circles. Just asked him if this was quoted out of context or is baseless, and to inform him that he is being quoted without reference in a very important matter.

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

In a way I am sorry to have raised this issue. However, the inititial object for making this report was to bring to notice what neurologists are saying with regard to CCSVI. I was not in the least bit surprised to observe their negative tone but it is very disappointing that the authors should feel the need to show their bias so overtly. They clearly state that they advise MS patients to ignore the procedure but was it really necessary to report the death of 2 patients without researching the cause of death? Methinks they protest too much!

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Nigel

...and sometimes universities get into competition with each other. SUNY Buffalo was rather surprised and not thrilled to see Stanford looking into "their" territory. I saw this in Bologna...
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Acol, I am not sorry you brought up this subject. I heard on another site about the two deaths and I was wondering where this information was coming from. No quotes, no references, just hearsay.

With everything one does in life comes the risk of death. But which is preferable: the chance of a decent life by taking a risk or doing nothing and becoming totally dependent on others for survival as a helpless creature? I know which one my daughter would prefer.

If something is not done to halt the progress of her disease she is serious about taking her own life... She sees her life expectancy as about 4 years. And she is only 30.

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.