How best to tackle CCSVI with neuro?

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

How best to tackle CCSVI with neuro?

Postby Wonderfulworld » Sun Sep 13, 2009 12:43 pm

Ok, I'm in Ireland, so doubt many CCSVI specialists here, but I am due to see my Neuro in December.

I want to ask about investigatioin for CCSVI. What should I take with me to the appointment? There's so little time I don't want to walk in with a stack of papers. My neuro is very well up on new developments but just not sure how to broach it in the time available......
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RR-MS dx 1998 and Coeliac dx 2003
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Postby CureOrBust » Sun Sep 13, 2009 3:08 pm

Everyone will have different ideas, mine would be to keep it simple the first time. I have tried bringing this idea to three different neurologists, and my GP. The thing they all asked / said was "but I don't see how CCSVI causes MS?" I would make sure you bring one of the current explanations of this process such as Dr Simka's latest PPT slides (linked here somewhere else).

I think the three that I would bring are:
1. The Zamboni published article of late 2008
2. An explanation by Dr Simka how CCSVI may cause MS
3. The Preliminary results of Zamboni's trial

You may wish to have a second group of papers with you in case they ask more. I would also write the URL to where all the other documents can be found. The foundations URL.

My personal thoughts, I would also state that the FINAL results of the Zamboni trial will be published in October. I also noted, that most if not all the neurologists asked "what journal was it published in" and were impressed (ie gave it more credit) due to the respectability of the journal. So I would point that out to them as well.
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Postby mrhodes40 » Mon Sep 14, 2009 8:27 am

The powerpoint slides are provided as a PDF document too so it is printable, thanks to NHE!! :D I have them linked on the research thread, page one post 2.

Link to the Foundazione Hilrescere is
http://www.fondazionehilarescere.org/eng/index.html

Cure makes a good point about the journals. The December '08 paper was in the Journal of Neurology, Neurosurgery and Psychiatry.
good luck
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby Wonderfulworld » Tue Sep 15, 2009 12:16 pm

Thanks a million Cure & MrRhodes. They are very useful links and papers - I will bring the lot and go in casually to the appt....if the final Zamboni results are in the Oct issue that's even better because I don't see neuro until just before Christmas so it will be well "out there" by then.
Thanks again, really appreciate your replies.

I have seen so many "BREAKTHROUGH" MS treatments touted in the last 11 years of MS...but I REALLY think this is one that will breakthrough. I think it solves half the puzzle. One commonality (CCSVI) and one variable (CPn or Mono etc?) might be the half of the puzzle anyway.
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby prof8 » Tue Sep 15, 2009 1:49 pm

Does anyone know what journal the Zamboni material will be published in in Oct.? I have a friend who is an ob-gyn and her Dad runs a large MS clinic in the US. I told her about the research and she consulted with her Dad briefly. Before he treated MS he did vascular neurology (strokes). Anyhow, both said that they thought all the publications really showed was a correlation between MS and vascular stenosis--no evidence of relief of MS symptoms or stopping of progression which had to be demonstrated in scientific trials. My doc. friend was open to the idea -- she said "maybe this will revolutionize MS treatment" but the theory is too much in its early stages for me to risk the surgery right at this point. I'm assuming in Oct. the Zamboni research will show evidence of reduced relapse etc? I should add that my friend's Dad called the Journal of Neurology, Neurosurgery and Psychiatry a "second-rate" journal. That's just his opinion obviously but clearly where material is published matters to doctors as to its validity. I sent more info to my friend's Dad (incld. the Bologna conference material) but have not yet heard back from him. I have an appt. with Dr. Dake lined up in a couple of months.
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Postby cheerleader » Tue Sep 15, 2009 1:59 pm

The Zamboni- Liberation technique paper will be in the October issue of the Journal of Vascular Surgery-http://www.jvascsurg.org/

also, I put together a little piece on talking to neuros, WW-

http://www.facebook.com/note.php?note_i ... 210&ref=mf

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dx dual jugular vein stenosis (CCSVI) 4/09
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Postby strayinma » Wed Sep 30, 2009 9:40 am

I have been stalking this website for a couple of weeks. It looks like the Issue has been uploaded... but I can't find the article. :( Any ideas? Am I looking in the wrong place?

http://www.jvascsurg.org/current

* EDIT - is this an old article?

Closest web search brought me to this article but not of the Vasc Journal:
http://www.fondazionehilarescere.org/pdf/CX.PDF
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Postby cheerleader » Wed Sep 30, 2009 9:50 am

strayinma wrote:I have been stalking this website for a couple of weeks. It looks like the Issue has been uploaded... but I can't find the article. :( Any ideas? Am I looking in the wrong place?

http://www.jvascsurg.org/current


the article you linked to is older, just a presentation at Charing Cross-
I couldn't find it either....here's the info we were given in Bologna on the research- it says "in press"...they had said October issue, maybe it didn't make it.

P. Zamboni, R. Galeotti; E. Menegatti; A. M. Malagoni, S. Gianesini, I. Bartolomei, F. Mascoli, F. Salvi Endovascular treatment of chronic cerebrospinal venous insufficency. A prospective opern-label study. Journal of Vascular Surgery, 2009, in press.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby strayinma » Wed Sep 30, 2009 11:02 am

Cheer, thank you very much for the quick reply on the article and publication details. I hoped to have the new article - hot off the press - in hand for my MS appt next Monday. I'm a probable MS case but want to start this conversation. I'll bring the old presentation as an icebreaker (with answers to anticipated questions in my back pocket).

Thanks, too (long overdue btw!), for your passionate, informed and memorable posts on CCSVI.
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Postby CureIous » Wed Sep 30, 2009 2:25 pm

strayinma wrote:Cheer, thank you very much for the quick reply on the article and publication details. I hoped to have the new article - hot off the press - in hand for my MS appt next Monday. I'm a probable MS case but want to start this conversation. I'll bring the old presentation as an icebreaker (with answers to anticipated questions in my back pocket).

Thanks, too (long overdue btw!), for your passionate, informed and memorable posts on CCSVI.


Keep in mind though that a neuro isn't needed per se for the operation, follow up or anything in between. Mine read the initial Zamboni paper and took off on his own adventure into research. (I think). I think 1,000 neuros will yield 999 different responses/attitudes/outlooks. Just keep in mind that although he/she is doing what they think best in accordance with their personal views, YOU ultimately are the final say so. Very few will be whole hog on this until much study has been undertaken. I for one am not interested in waiting on THEM to give ME the thumbs up for something I can see with my own two eyes, while my disease progresses.

Mark.
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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Postby MrSuccess » Thu Oct 01, 2009 8:19 pm

I find it very interesting ...the various approachs. Some seem demanding. Some are meek. The rest somewhere in between.

This is my theory.

Neurologists are intelligent and educated people. HIGHLY educated. And no doubt as curious as the next guy.

No matter how thick that sheave of paper you printed out last night is , it will not matter for much. What matters is intelligent educated people talking nose to nose.

Such as Dr. Dake talking to Dr. Zamboni. They have to spread the word...... to other bold and couragious doctors ....



It may take more time than we like. Frustrating ....I know. :evil:

We have no choice but to wait it out as study research and clinical findings get produced ......and published.

In the mean time .......do whatever you can to keep CCSVI on your neurologist's radar......keep telling them ...this looks promising ..what do you think ?

Nice and polite like ....of course



Mr. Success





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Postby CureIous » Fri Oct 02, 2009 12:04 am

MrSuccess wrote:I find it very interesting ...the various approachs. Some seem demanding. Some are meek. The rest somewhere in between.

This is my theory.

Neurologists are intelligent and educated people. HIGHLY educated. And no doubt as curious as the next guy.

No matter how thick that sheave of paper you printed out last night is , it will not matter for much. What matters is intelligent educated people talking nose to nose.

Such as Dr. Dake talking to Dr. Zamboni. They have to spread the word...... to other bold and couragious doctors ....

It may take more time than we like. Frustrating ....I know. :evil:

We have no choice but to wait it out as study research and clinical findings get produced ......and published.

In the mean time .......do whatever you can to keep CCSVI on your neurologist's radar......keep telling them ...this looks promising ..what do you think ?

Nice and polite like ....of course

Mr. Success


[/i]


Very well put.
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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Postby strayinma » Fri Oct 02, 2009 6:31 am

Thanks guys. This is definitely a handle with care topic. I respect my neuro too much to step on her toes. She is actually, by all measures, brilliant. She offers a great balance of education and caring to her practice. She is a healthy skeptic so this is purely a "have you seen this" talk. The only theme I have strided with is exclusively biochem and pathology of MS, particularly the role of nitric oxide and microcirculation....not so much symptoms since I haven't any at the moment. I am a skeptic of ALL treatments for MS, but CCSVI is one that has the most empirical evidence. My neurologist already knows this about me. ;)
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Postby Waken » Fri Oct 02, 2009 1:33 pm

Well I had a wonderful convo with my neuro today. I actually had an appointment with him 2 weeks ago and it was then that I asked if he was familiar with CCSVI. He did not have any information as to what it was so I gave him the basics and he told me he would be doing some research. I had actually sent him all of the various papers on CCSVI via e-mail but I suspected, based on his response, that my e-mail to him "got lost.".

I went back to him today and we proceeded to discuss CCSVI. Although he wants more research to confirm Dr. Zamboni's findings he was extremely interested. He has always believed that the autoimmute theory was wrong and that cell death was occuring first prior to inflammation but I was still very pleased to hear how open he was to Dr. Zamboni's work. He is an intelligent and thinking nuero and who comes to his own conclusions. I told that not all neuro's reacted to CCSBI as he did and he was dismayed. He did not care if this meant fewer patients for him as long as the disease was cured or successfully managed. Good guy with the right motivations.
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Postby Wonderfulworld » Sat Oct 03, 2009 6:03 am

That sounds like you have a great neuro there Waken.

I don't see mine until right before Christmas but I am very hopeful he will be open to reading about it.
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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