"whining about neurologists"

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby marcstck » Sat Jan 15, 2011 6:49 pm

Cece wrote:On the facebook site, it was just said that in a personal email with Dr. Zivadinov, he has said that he believes CCSVI is central to the pathogenesis of MS.

Marc, when you say nothing definitive can be said about CCSVI...even my neurologist thought that a definitive association has been shown between CCSVI and MS.


An association between MS and CCSVI does appear to be fact. However, until we know the rate of CCSVI-like abnormalities in healthy control subjects, even that statement cannot be said to be definitive. It may turn out that there is an association between CCSVI and being human.

Again, I believe that there is an association between MS and CCSVI. We haven't had any large-scale looks at healthy control subjects, though, so we don't know whether or not venous abnormalities are more the norm than the aberration (as has been told to me by several very well-respected doctors, including neuroradiologists). What we currently have are indications, not proof…
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Postby marcstck » Sat Jan 15, 2011 7:11 pm

cheerleader wrote:Marc--
You said congenital venous malformations wouldn't worsen with age.
I showed research that says they do.
Truncular venous malformations can become worse with age and duration of disease and disturbed blood flow.
All of the reseach you linked shows CCSVI is worse in those with more with disease progression--which makes sense.
I made no argument as to causation in CCSVI (which is still being researched and further illucidated).

Dr. Lee is not under anyone's umbrella. He was the most vocal skeptic at the Bologna conference. He is a vascular doctor, as is Dr. Zamboni. Their research into venous malformations comes from a lifetime of vascular practice, not neurology, not imaging. But looking at actual veins. Seeing the webs, the septi, the aneurysms. Here is another paper he wrote on Budd-Chiari.
http://www.jvascsurg.org/article/S0741-5214(05)01420-5/abstract

The doctors who are researching and publishing in Phlebology and other vascular publications are independent experts in their fields. Again, there is no Zamboni umbrella. The fact that they are are not consulted or are denigrated in the ongoing neurological studies of CCSVI is a sad fact. Phlebology hasn't been considered an important medical field....but that may change.

cheer


Joan, I have no desire to get into a research for research tit-for-tat pissing war with you, as you've earned too much of my genuine admiration, respect, and affection for that.

The genetic malformations associated with Budd-Chiari have indeed been demonstrated to worsen with age and duration of disease. How or if that applies to CCSVI has yet to be shown. Hopefully the next several months will bring research data to light that will clear up many of these questions.

When all is said and done, we're both on the same side. Let's just let it be…
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Postby Cece » Thu Mar 17, 2011 10:54 pm

After the discussion over whether Dr. Zivadinov is still behind CCSVI or not, it seems relevant that he is the next president of ISNVD after Dr. Zamboni. He is still in the thick of this. :)
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Postby MrSuccess » Thu Mar 17, 2011 11:09 pm

I like a man [ or a woman ] that plays his cards close to his vest ......


Dr. Zivadov .. :D




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Postby Cece » Fri Mar 18, 2011 7:32 am

Prof Robert Zivadinov, the next President of ISNVD after Paulo Zamboni, presented an excellent paper soon to be published which showed the severity of CCSVI was directly related to reduced cerebral blood flow in both white and gray matter.

http://us1.campaign-archive1.com/?u=646 ... ca3fe91&e=

The severity of CCSVI is directly related to reduced cerebral blood flow in both white and gray matter.

I take this one personally, my blockages were severe (80% and 100%). My poor brain.

But these are excellent findings. Can't wait to read this paper in full. How did he measure the severity of the CCSVI and the reduced cerebral flow? How many subjects were in the study? This does not sound like a guy walking away from CCSVI theory.

(And to keep with the topic header of whining about neurologists, my neurologist's office called to cancel my next appointment, then tried to push me into taking a too-early appointment that didn't work with my schedule a month from now, because "he wants to see you as soon as possible.")
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Postby CureIous » Sat Mar 19, 2011 11:00 am

So many neuros, so little time. This reminds me of the siblings that are anxious to get to Mom first, the first version of "what happened" seems to have more impact does it not?

When many neuros first exposure to CCSVI is negative study articles in the publications they read, it makes all else after seem like so much desparate grasping to hold on to a dying theory. Of course we all know there's plenty more to come to the story, and are still forming the preface part of the book, not postscript.

My wife has NFS. So does my 1 year old son (presumably, due to indicators). The measurements on his head circumference grew at an abnormal rate between 9-12 months, our stellar, thorough pediatrician referred for immediate neuro consult and possible MRI. It is possible, though not probable, that a neurofibroma is causing his cranium to grow at a faster rate. I think he went from 80th to 95th percentile in 3 months.

Wife of course was understandably VERY upset, but I showed her my numbers, and my eldest daughter's numbers from those same time periods (9-12 months, my Mom kept records of EVERYTHING), and we both had a spontaneous spurt 9-12 months (height/weight) before leveling out. After much discussion I was finally able to convince her that the ped. doesn't have magical eyeglasses, I even did a perfunctory neuro exam on him myself (we know these by heart right?), Babinski reflex, whatever else I could come up with. All seemed normal. Growth, function, demeanor, all progressing nicely, nothing untoward whatsoever.

During the course of the visit, he mentioned how we would notice changes in his functions if something was going on neurologically, this spurred my wife to mention the familiar MS symptoms she knows so well with me, then of course CCSVI, Stanford etc. She said his ears perked up immediately, and he wanted to know more, was jotting down notes furiously, asking questions. Exploring. Where to find stuff on the web, all that. He asked about me, she gave him the thumbnail version, to which he replied “well then he got his veins treated and didn’t have MS in the first place right?”, “No” she said, he was diagnosed MS, got treated and has been medication and symptom free since.
This was not a “hey honey while you got the neuro cornered” visit, it was about my son, but since he passed all his tests with flying colors, there was time for small talk before leaving. He *may* get an MRI in a year, but the neuro was reticent to sedate him for the test, so just monitor for changes, see how things go and I think his growth numbers will level out in the coming months.
Overall, he seemed very receptive, and I’m proud of Suzy for having the presence of mind to at least give it a mention while there. You go girl! One doc at a time…..
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
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