1) He said that there has been one death already, which was due to a migrating stent.
The truth is, one death occurred that was not related to CCSVI, but due to the coumadin that was taken following surgery, there was hemhorraging from a different condition that could not be stopped due to the coumadin. This has been discussed here and corroboration was given as to what the cause of death was and that it was not related.
2) He said that there have been two stent patients who've required open heart surgery due to migrating stents.
He must have knowledge that we do not have.
3) He said that the problem with the study conducted by Zamboni was that it was not a controlled study. He said that if he had 100 MS patients and 90% had stenosis, and he took 100 epilepsy patients and 90% of them had stenosis, and he took 100 normal patients and 90% of them had stenosis, then what? How could MS be linked to CCSVI?
Did he really read the study?
4) He said that the study does not address the fact that noted vascular surgeons have proven that when the position of the head changes, so too do the veins open and close. He stated that the study was not conducted taking into consideration the patients position and how laying supine affected the results.
Again, did he REALLY read the study?
I have to say that I was very disappointed with the negative spin that was given to CCSVI. He put up pictures, which we have all looked at here, but mainly only to point out that the vein opens up when the head is positioned a certain way ( I think he even used a closed vein pic and then a stented pic to demonstrate this). I thought that a colleague of Dr. Haacke may have presented this in a more unbiased manner, but alas, he is of course a neurologist. I would have loved to have had a vascular doctor there looking at those pictures and telling us the potential outcomes of that damage. Oh well. Just wanted to let everyone know that there is definately a battle ahead in terms of getting any true validation.
I'm glad at least I met a good neuro, specializing in MS, who had a "we'll wait and see" attitude towards Zamboni's findings, instead of an out-right denial of it.
Dr. Khan should read Dr. F. Alfons Schellings' book, Multiple Sclerosis: the Image and its Message, the meaning of the classic lesion forms. It is available on the internet. His theory was not allowed to be researched, this was in the 1980's, and thus, the current mindset that MS is soley neurological. And,that only drugs will resolve MS symptoms. Dr. Zamboni's study concurs with Dr. Schellings' theory.
So, don't think this fight will be an easy one.
I can't see anyone voluntarily constricting their jugular veins to cause MS in themselves for the sake of proving the case, so I rekon that this is not going to be a solution for this procedure, but we now have the advantage of the internet and MS sufferers and their families will be stiring the waters and demanding some serious discussion and studies pronto.
Dovechick - I am also familiar with this study. Because of it, my husband and I both were tested and were given the proper antibiotics to control our ulcers and gastro issues. Very thankful for the man who infected himself to prove his theory! He won a Nobel prize for his work, which he well deserved.
I forgot to add that Dr. Khan also discussed using mice as a possible way to prove/disprove whether CCSVI is plausible. He said that their veins could be manipulated to mimic stenosis and we could then see what happens to them. I thought, but mice don't get MS! I am rather shy when it comes to public speaking, so not a great candidate to represent the CCSVI community. There was one man who asked "Isn't this worth pursuing further?" To which he replied, "Of course! Which is what will be occurring very soon, so please, do not run out and get stent surgery! Give the researchers time to explore this further first."
Other than that, no one else asked questions about it and they moved on to other "promising" new therapies and asked many questions about those.
The trouble with medical people is that they don't usually suffer from the diseases they are treating, and sometimes rushing is necessary to maintain some kind of quality of life.
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Dr. Khan is a well known and liked neurologist for many MS patients in our area. I had heard of him, but others there seemed to know him more personally. This, of course, affected how his speech was received, and I didn't feel that there was much skepticism. He had some very good information about new therapies such as the finglomod study (which he said we may be able to join at WS soon) and many others. The one everyone seemed most impressed with of course was the embryonic stem cell research that he noted would most likely be offered to progressive MS patients when it comes about.
I think that perhaps just as he feels we shouldn't be rushing out to get stent surgery, that he should not be rushing out to give misinformation about CCSVI. There was a survey to fill out at the end, to which I did not hold back on my comments and feelings about the misrepresentation. I was not rude, but I did state that I felt the discussion about CCSVI was not factual and that perhaps he would eliminate the discussion about bee venom therapy as an opening to the topic. Hopefully, he will take my advice. Like I said, I wasn't expecting him to even talk about it at all unless someone asked him about it!
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