2 new reviews by Dake and Siskin et al in Endovascular Today

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

Postby cheerleader » Mon Aug 01, 2011 8:19 pm

Here is Dr. Siskin in his article, on the need for neurological end points and parameters as we move forward...

At the present time, anecdotal reports continue to surface about the positive changes reported by patients after endovascular treatment of stenoses within the IJ and azygous veins. However, one can in no way state that enough research has been done to conclude that CCSVI is a true pathologic entity occurring with an increased frequency in MS patients, that this entity is responsible for the symptoms and disease progression seen with MS, and that treatment significantly improves the quality of life in these patients. As a result, additional research is going to be critically important moving forward.

This sentiment was echoed in the recent report from the Research Consensus Panel convened by the Society of Interventional Radiology Foundation, which supported the need for additional well-designed studies in areas including basic science work to better understand the relationship between venous stenoses, hypertension, and CCSVI; single-center studies to define appropriate patients to treat and develop standardized procedural technique; and multicenter, prospective, randomized trials to demonstrate efficacy.34 Ongoing studies include registries in Europe and the United States as well as several prospective single-arm and randomized, blinded studies. Ultimately, these studies will help grow our understanding of CCSVI and help determine what role treatment of this entity can and should play in the care of patients with MS.


I'll never forget Jeff explaining what happened to him on the table...he had nothing to go on, he hadn't watched any you tube videos, or read any testimonials. He's not especially suggestable, had no idea what to expect. And he was the first....
"I asked Dr. Dake, what did you just do to me, and he said "Why? Everything OK?"
And I said, yeah, it's great. Everything is clearer; my vision, my brain...it all feels different. I'm awake!
And he said, "I just opened up your right jugular vein."
Not sure how an MRI will ever capture that.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Mon Aug 01, 2011 9:51 pm

I had that too. You don't expect such a change from one moment to the next. Even this second time for me, the room suddenly got brighter and whiter. It would be easier to believe that they turned up the lights at that moment than to believe my perceptions had been that off and was corrected that easily.
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Postby MrSuccess » Tue Aug 02, 2011 1:01 pm

The Power of suggestion .... seems to be a formidable force , Marc .

Not CCSVI related but ..... of interest .... is a story about Mrs. Henry Ford ..... that I read with amusement . I'll relate it here.

The Ford's were in their lifetime .... extremely wealthy . They built a mansion called " Fairlane " . And they employed numerous people to run this magnificant historical property .

The story goes .... that one day Mr.Ford encountered the cook walking back to the hen house with a chicken . Asked why , the cook told Henry that Mrs.Ford viewed and rejected the selected bird , as unfit for dinner.Too skinny or something.

Mr.Ford examined the bird . Then told the cook to wait 10 minutes ... then return to present Mrs. Ford ..... with a " new " bird , for her inspection.

Of course ... this was the same chicken .

Sure enough ...... when presented with the "new " bird ...... Mrs. Ford is recorded as saying ...... " There ..... that's much better ! "

Mrs. Ford was an extremely bright and intelligent woman . As history has recorded.

But I guess ........ even the brightest people ........ can be had .



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Postby codefellow » Sat Aug 06, 2011 5:43 am

cheerleader wrote:
Hard proof in MS drug trials is reversal of brain atrophy, healing of lesions, lack of new lesions and similar evidence on MRI. That's what the neuros want to see, but they are also insisting pwMS stay on their drugs duing venoplasty studies...and you can bet any MRI changes will be credited to the drugs. It is an impossible situation. Catch 22.


There are many MS patients who have never taken a DMD. From what you say here, these are the volunteers we need.
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Postby cheerleader » Sat Aug 06, 2011 12:06 pm

codefellow wrote:
cheerleader wrote:
Hard proof in MS drug trials is reversal of brain atrophy, healing of lesions, lack of new lesions and similar evidence on MRI. That's what the neuros want to see, but they are also insisting pwMS stay on their drugs duing venoplasty studies...and you can bet any MRI changes will be credited to the drugs. It is an impossible situation. Catch 22.


There are many MS patients who have never taken a DMD. From what you say here, these are the volunteers we need.


They wouldn't be accepted...one of the parameters the neuros are saying is essential for large scale clinical trials is that all pwMS enrolled must be on an approved DMD before and after. This is a problem.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby codefellow » Sat Aug 06, 2011 3:17 pm

cheerleader wrote:
codefellow wrote:
cheerleader wrote:
Hard proof in MS drug trials is reversal of brain atrophy, healing of lesions, lack of new lesions and similar evidence on MRI. That's what the neuros want to see, but they are also insisting pwMS stay on their drugs duing venoplasty studies...and you can bet any MRI changes will be credited to the drugs. It is an impossible situation. Catch 22.


There are many MS patients who have never taken a DMD. From what you say here, these are the volunteers we need.


They wouldn't be accepted...one of the parameters the neuros are saying is essential for large scale clinical trials is that all pwMS enrolled must be on an approved DMD before and after. This is a problem.
cheer


I can see their (despicable) reasoning. That way, any improvements in symptoms can be be attributed to the DMD's, even if the DMD's NEVER caused symptom relief prior to the angioplasty. That's my take, but what reason do the neuro's give for insisting the pwMS are on DMD's before and after?
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Postby Cece » Sat Aug 06, 2011 5:28 pm

I would think it shouldn't matter. CCSVI treatment is adjunctive, it is meant to be in addition to what's already being done.
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Postby jay123 » Sun Aug 07, 2011 9:23 am

- I was told the Buffalo study is having trouble filling spots due to the tough requirements such as other meds people are on, plus the fact that it is double blinded so many people won't be getting 'real' surgery. If successful this study would help clarify some issues.

- Many people do see great subjective improvements after the procedure. I agree with Cheer, I felt so much more awake, I described the feeling as the difference between TV and hi def TV. Unfortunately I re-stenosed and after the second procedure never got that feeling back again. Dr. Siskin mentioned to me that lack of improvement after a second procedure has been one of the mysteries of CCSVI he has noticed. Why???????

- One objective improvement I had was my 'blue' foot returned to normal color after the first procedure, and has stayed normal. Seems wierd fixing a neck vein would fix a foot problem, b ut at least it's something that can be documented!

It's too bad, our disease has so many different symptoms and nuances including many that come and go. This make it very difficult to quantify improvements. I also am one that looks at the cost of drugs (Gillena rumored to be $48,000 a year?) and really wonder if their are to many financial incentives though for something like CCSVI to get a fair trial.
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