Exclusive CCSVI Alliance video---Dr. Dake and Dr. Mehta

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

Postby Motiak » Thu Dec 02, 2010 8:21 am

Lyon wrote:
cheerleader wrote:he'd seen about 20 of the now 24 one year club, and no one had new lesions, but that's obviously changed since she was there.
I need reading glasses because at the time I was convinced Joan was saying that he'd seen 20 lesions in the now 24 one year club and no one had new lesions, but that's obviously changed since she was there. and I couldn't make sense of him seeing 20 lesions and then saying that he hadn't seen any. Now I understand what she's saying.

For clarification I think she meant he saw 20 patients of the 24 patients not 20 new lesions in the 24 patients.
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Postby cheerleader » Thu Dec 02, 2010 8:33 am

Morning guys--
I said the first 20 patients at their one year had no new lesions as of when Rhonda went back for her one year in October. Here's her post:

I was told by Dake that out of 20 MRI's done so far there has been nothing new!!! One patient did however have a slight increase in the size of an existing lesion. Sounds like good evidence to me.
Ashton, I really appreciate your post and admire you. Thanks!

http://www.thisisms.com/ftopic-14355-da ... da-15.html

We'll talk to him for clarification. He may or may not want specifics given online. Will let you know if it's OK, or he'd rather not.

In any event, yes---he continues to dig in! I'm still amazed that this talented and respected doctor has opened up time in his already full career to study CCSVI.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby magoo » Thu Dec 02, 2010 8:35 am

I was confused when I heard Dr. Dake say he had found new lesions. As Joan said, when I consulted with him in October, he told me that out of the 20 patients he had seen so far no one had new lesions. He did tell me one patient had enlargement of an existing lesion.
So if there were 4 more check-ups after me, one of them had to have the new lesions. Two of the last 4 were there at the same time as I was and they didn't have anything new. That leaves the last two.
I wonder why and I wish he had elaborated. Maybe he will give the Alliance a follow up interview?
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Rokkit » Thu Dec 02, 2010 9:20 am

Dr. Sinan thinks the real problem is with the valves almost all the time. The above stenoses are secondary. If he's right, I am speculating that those of us with stents could still have reflux being caused by bad valves. As far as I know, not many of us (none of us?) have had a doppler which might show the reflux if it's still there. Anyway, this is one possible explanation for new lesions.
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Postby BooBear » Thu Dec 02, 2010 9:30 am

I agree that the video was awesome.

It seems as if lesions remain the hallmark of disease progression, though I am increasingly skeptical of the validity of that approach.

I have a whole lotta lesions (34 to be exact), yet my disease progression was far superior to those with very few lesions overall.

No new lesions is good news overall, but I believe progression is more closely linked to something else...what, I don't know, but something.
Three veins angioplastied.  One renewed life.  
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Postby Lyon » Thu Dec 02, 2010 9:55 am

Last edited by Lyon on Tue Jun 21, 2011 3:36 pm, edited 1 time in total.
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Postby CCSVIhusband » Thu Dec 02, 2010 10:12 am

Lyon wrote:
magoo wrote:I was confused when I heard Dr. Dake say he had found new lesions.
This computer at work is too slow to do video and I have to go by memory but it seems that Dr Dake said that "we" have seen new lesions and since most of these researchers are in contact it seems that maybe the "we" meant "we researchers" and it wasn't Dr Dake specifically who had seen the lesions?

I don't doubt people who have been treated for CCSVI are developing new lesions ...

I say that because I don't think the treatment for CCSVI has found ALL of the problems and corrected them in ALL of the people treated.

I think Dr. Dake probably did one of the more thorough jobs of treating CCSVI (granted he used stents) ... and his results have probably held up (or maybe they're just the longest) over time.

I think now that Dr. Sinan, Dr. Sclafani are starting to focus more on valves, webs, and leaflets and using larger balloons, that the results people may see will potentially be better (and last longer).

Obviously this treatment needs to be further standardized (we don't argue that) ... everyone is still learning (which is why I think stents may be too aggressive at this point - but they seem to be doing well for Dr. Dake's patients).

Give it time ... we're all going to learn a LOT more. (and so are the doctors).

Everyone's always said this isn't a one time shot ... and I feel for the people putting all their hopes going to Europe to have this done ... because I don't think they're getting the BEST possible care. But I understand if they choose to take that risk knowing that.

I agree with what Lyon said, Dr. Dake didn't necessarily mean his patients ... he was speaking of the conglomerate Dr. "we".

I think as better methodologies are used for treating CCSVI, better results will follow. I think Dr. Sclafani's new organization will go a LONG way to opening up CCSVI knowledge and facilities (throughout the US) ...

I feel for you Canadians ...
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