Treating CCSVI--multi-factoral care

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

Treating CCSVI--multi-factoral care

Postby cheerleader » Mon May 31, 2010 7:39 am

I think there is a disconnect happening in the MS community receiving CCSVI treatment, and it's worrisome. There is a sense that someone can be treated with angioplasty/stenting, come home, and be done with their problem. This couldn't be further from the truth--and I just want to put out another warning.

I've written on here about Jeff's multiple visits to Stanford for follow-up (three times, now) as well as his working with his GP and neurologist to keep tabs on his blood numbers and other symptoms. There is a need for patients to stay local and work with doctors in their area. But it goes beyond this...

Patients need to look at lifestyle, medical regimen, diet and exercise--just as if they were recovering heart attack or stroke patients. Just as a heart patient is sent home after angioplasty and stenting with a new low fat diet, exercise regimen, blood thinning regimen and program for healthy living, CCSVI patients have to consider the same factors.

We've seen patients blood numbers return to hypercoaguted states after they decide to discontinue blood thinning regimens on their own. Patients have no access to medical follow-up after returning home, no blood monitoring or after care. And this scares me.

Please--if you are traveling to another country, at least have a relationship with a doctor BEFORE you leave. Someone who can check your blood numbers, listen to your heart, watch your rehabilitation, look for complications. It can be another vascular doctor, your GP or your neurologist. But make sure you have this in place before you go anywhere. And if you can stay close to home, PLEASE try to do this first.

So much has happened in the year since Jeff's first procedure. He has stayed on his supplements and lifestyle program, is trying to keep those veins flowing, but it hasn't been a breeze....this isn't a one time deal. It is a lifetime commitment to a new vascular reality. OK?
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby Trish317 » Mon May 31, 2010 8:42 am

Excellent words of advice, Cheer.
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Postby NZer1 » Mon May 31, 2010 2:15 pm

Thanks Cheerleader, I hope that these words of wisdom will be understood and that we all start looking at the big picture and not jumping with a leap of faith.
There are some very good parallel thoughts on the thread "Retrospective Study Idea"
There is a allot of wisdom to be learned from those who have been treated and their loved ones, and I hear important feedback that we can all learn from. Thanks Cheerleader.
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Postby sofia » Mon May 31, 2010 2:52 pm

Important stuff!
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby ppicklee » Mon May 31, 2010 3:42 pm

If we have read and in fact take the research into context I don't believe this is ever called a "cure" but it is a treatment. (Staving off progression if results are not felt immediately.) Thank you Cheerleader! Very well spoken.
PS -- this perhaps is no magic bullet but at least we may SEE the gun. :-)
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Postby hopeful2 » Mon May 31, 2010 5:13 pm

Well said Cheer! :D Thanks for posting this.
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