Major decision please read......

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

Major decision please read......

Postby brianm » Sun Apr 17, 2011 1:16 pm

My appt for venogram ccsvi is at the end of the month. Im getting cold feet regarding restenosis. why get the surgery if you are more than likely going to restenose after a year? FYI im not really disabled yet soo im having trouble convincing my wife. Ugh Brian :cry:
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Postby Cece » Sun Apr 17, 2011 2:00 pm

For me, it was a very good choice to get it done. We dont' know the restenosis rates yet; for Dr. Zamboni's paper, which is the only publication on long-term results so far, 50% restenosed and 50% didn't as of 18 months post-procedure, so a year and a half. It might depend on what kind of stenosis you have too.

I think too most CCSVIers have at least two veins affected, some have three, and once in awhile there will be a patient who has four (including the iliac or the renal) which is just too many. So if both veins get ballooned, I am not sure what the individual restenosis rate might be for each vein; if my left jugular restenoses but my right one stays clear, I am better off than I began, for example.

All the best with the decision! Are you self-paying or is it covered by insurance? Will you be able to go back or see someone local for follow-ups?
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Postby brianm » Sun Apr 17, 2011 2:10 pm

It is in Fresno Ca. and yes insurance is gonna pay. I talked to a localIR here who is gonna do it for me. Just getting cold feet, I think im gonna wait.
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Find an expert or wait

Postby MarkW » Sun Apr 17, 2011 2:17 pm

My advice = find an expert or wait. Your 'local IR' adds to your risks.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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just a suggestion....

Postby codefellow » Sun Apr 17, 2011 2:24 pm

Have you been tested?

My wife's MS is really, really bad. She cannot move a thing below her neck, but fortunately her cognitive ability is not affected We are both watching the CCSVI/Liberation story unfold with interest and believe it or not, patience.

Our plan is, when we are ready, she gets tested ONLY.

We will wait for the test results and THEN decide what to do next.
Every day, the IR's treat yet another brave pioneer and they learn a little more, refine the technique a little better. Some may even find new ways to reduce the rates of restenosis without stents.

Just recently, neck collars were introduced that can help diagnose CCSVI by analyzing flow. Who knows what new innovation will happen a month or so from now? A year?

FWIW, I agree with those who think you should wait.
But if possible, keep the appointment and only get tested for now.
Just stick your toe in the water before you dive in with your whole body!
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Postby Liberation » Sun Apr 17, 2011 2:25 pm

brianm wrote:It is in Fresno Ca. and yes insurance is gonna pay. I talked to a localIR here who is gonna do it for me. Just getting cold feet, I think im gonna wait.

Hi brianm, I understand your hesitation because I am in the same situation. Mine was done in December but it got already restenosed. I've already had an appointment with dr Sinan but I got a cold feet when I read about so many thrombosis occuring with large balloons. Dr Sclafani's approach seems to me the most viable at the moment, but I must say I am still learning about the procedure everyday.
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Postby EJC » Sun Apr 17, 2011 2:45 pm

For those with MS but not severe MS then I understand the wait and see approach.

Emma had the procedure in December but at that point she was rapidly declining to a point where wheelchair use was going to be a daily event. She hadn't worked for 10 years and life wasn't a happy place for her. In Emma's position CCSVI treatment has more upside than downside.

Her improvements have remained and we will have a scan at 6 months.

I think that's what it comes down to.

Where are you now physically?

Does the possible upside of a CCSVI procedure outweigh the downsides?

Is there somewhere local that has experience with whom you're comfortable undertaking the procdure?

Will there be local backup available if anything went wrong?

In Emma's situation we'd asked ourselves all four of these questions and the answer in her case was the procedure was viable.

That is not the same for all, expecially those in Canada.

Despite Emma's obvious improvements, I'm not convinced CCSVI is "THE" answer, although I am convinced it's part of the answer, or at least opened another avenue to the learning of what we currently understand MS to be.

Having been through it and knowing what we know now, would we make the same decision?

100% yes, no shadow of doubt, the procedure improved Emma's quality of life tremendously.

Does that mean it's right for you - that's your call.

If Emma was less effected and not relapsing continually we would also probably have waited until understanding progressed.
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Postby ikulo » Sun Apr 17, 2011 3:16 pm

I was mild MS and had venoplasty. Since then I've been on a slow downward spiral. In hindsight I regret jumping into it so quickly when I still felt pretty good. I would wait.

New research suggests that CCSVI isn't as big a part of MS as we all had hoped.
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Postby brianm » Sun Apr 17, 2011 3:17 pm

Im gonna wait a little longer i think, my MRV was from the head up and showed 1 cranial vein pinched. that was enough evidence for him to proceed. Just a tough situation, dont want to wait till its to late.
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Postby ikulo » Sun Apr 17, 2011 5:53 pm

MRV isn't accurate anyway. I wouldn't base my decision on that alone.
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ccsvi

Postby blossom » Sun Apr 17, 2011 6:36 pm

early on ms and not that bad i would definitely wait. in the meantime you mentioned something pinched in the cranial. have you checked out dr. flanagan's or dr. diana's?
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Re: just a suggestion....

Postby dlb » Sun Apr 17, 2011 9:20 pm

codefellow wrote:Have you been tested?


Our plan is, when we are ready, she gets tested ONLY.

We will wait for the test results and THEN decide what to do next.
Every day, the IR's treat yet another brave pioneer and they learn a little more, refine the technique a little better. Some may even find new ways to reduce the rates of restenosis without stents.

FWIW, I agree with those who think you should wait.
But if possible, keep the appointment and only get tested for now.
Just stick your toe in the water before you dive in with your whole body!


Codefellow....
Your post pretty much sums up how I'm feeling at this point in time. I have felt from the beginning that I will undoubtedly have an issue in my veins & was not even inclined to get tested (DU). I have had to pass up a few opportunities to be tested/treated by Dr. Sclafani b/c of my husband's overseas work schedule & my wish that he be able to come with me. Truthfully, I was a little bothered by testing & treatment following the day after - way too fast for me. I finally decided that I would go to Barrie, ON to have the DU, and then as you say 'decide what to do next'. So, I've just 'dipped my toe'.... Had my DU done by Angie last week in Barrie, ON. The results have not arrived in my mailbox yet. I reside in Canada, so the bonus... if/when I 'dive in', I will hopefully have a place to go for follow-up here in Canada after becoming a patient at this center...???? It feels like baby-steps somedays and other days, I feel that I'm best to wait.... so much is happening & changing. Restenosis &/or clots scare the crap out of me. I certainly teeter back & forth about how I should approach this & my very wise spouse keeps telling me that only I can make this choice for myself. He has listened to HOURS of me yammering on about CCSVI & if he has an opinion of what my choice should be.... he has never voiced it one way or another. I know I will have his support no matter how I proceed - just wish I had a crystal ball and I'm certainly grateful that my condition is such that I can take the time that I feel that I need to take. It is certainly not an easy choice & none of us wants to live with any regrets, would-haves or should-haves.....
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Postby drsclafani » Mon Apr 18, 2011 4:42 am

brianm wrote:Im gonna wait a little longer i think, my MRV was from the head up and showed 1 cranial vein pinched. that was enough evidence for him to proceed. Just a tough situation, dont want to wait till its to late.


Relying upon the images of an MRV is unreliable.
treating an intracranial vein is not likely to be the solution.
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Postby Coolcatcarrie » Mon Apr 18, 2011 4:56 am

My opinion is different to the replies you've had so far - I'd say I would have gone for it right at the beginning of my ms journey if this was 8 years ago! Its a very personal decision and you should do exactly what you decide to do! None of us know exactly the right thing to do! X
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Postby dania » Mon Apr 18, 2011 7:28 am

I regret having it done. First time was June 2010. Got great improvements that were short lived. Tried 3 more times. And with the last 2 the doctors were unable to get in because my veins are now scarred and are blocked 100%. Wait. It is not worth the chance of becoming more disabled.
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