Post if CCSVI treatment did NOT work for you

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

Postby marcstck » Thu Oct 21, 2010 10:31 am

newveins wrote:I had angioplasty a month ago 80-90% stenosed in both jugs and azygos. Darn, no improvements, no sedation during the procedure so I could feel the balloons otherwise I might have thought they skipped that part as I felt exactly the same during and after the procedure not even the warm hand/feet bit.

Well, I hope that I am slow to improve and that I will be removing this post when lots of improvements slowly show up the next couple of months. I have had MS for many years and have plenty of symptoms that could be improved walk poorly, type poorly, poor bladder function, insomnia etc fatigue though is not a problem.

So bizarre that a few of us can be so plugged up and have no improvements while most with seemingly the same have lots. There sure is something we don't know about ccsvi yet.


Don't let the ratio of responders versus nonresponders as reflected on this site give you the false notion that the vast majority of people undergoing the liberation procedure see significant improvement. Although very little tracking of outcome results has been done, Dr. Gary Siskin, the IR doing the liberation procedure in Albany, estimates that about one third of his patients see no improvement at all, and another third only see slight improvement.

What you see reflected on Internet forums and YouTube videos is the natural phenomenon of people who have positive experiences to report to be much more inclined to make their results public than those with negative experiences. This isn't an attempt at subterfuge on anybody's part, but merely human nature.

CCSVI holds a tremendous amount of promise, but there is currently very little scientific consensus as to the role it actually plays in the MS disease process, and there are tremendous differences in the way the procedure is performed from the Dr. to Dr. Lots still to be learned, and liberation procedure best practices need desperately to be established.

Don't get down on yourself for not experiencing your hoped-for results. Based on my extensive contacts with patients both here on the web and personally, you are far from alone.
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Postby newveins » Thu Oct 21, 2010 10:55 am

LOL at least my post got a reply from the guy with the coolest (no contest) ms website which I have been reading from the start and which continues to put a smile on my otherwise often sour face. Welcome back from the hospital, Marc.
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Postby Lyon » Thu Oct 21, 2010 1:02 pm

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Postby pklittle » Fri Oct 22, 2010 6:17 pm

marcstck wrote:
don't let the ratio of responders versus nonresponders as reflected on this site give you the false notion that the vast majority of people undergoing the liberation procedure see significant improvement. Although very little tracking of outcome results has been done, Dr. Gary Siskin, the IR doing the liberation procedure in Albany, estimates that about one third of his patients see no improvement at all, and another third only see slight improvement.
What you see reflected on Internet forums and YouTube videos is the natural phenomenon of people who have positive to report to be much more inclined to make their results public than those with negative experiences. This isn't an attempt at subterfuge on anybody's part, but merely human nature.
CCSVI holds a tremendous amount of promise, but there is currently very little scientific consensus as to the role it actually plays in the MS disease
process, and there are tremendous differences in the way the procedure is performed from the Dr. to Dr. Lots still to be learned, and liberation
procedure best practices need desperately to be established.
Don't get down on yourself for not experiencing your hoped-for results. Based on my extensive contacts with patients both here on the web and personally, you are far from alone.


Great post.
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Postby belsadie » Sat Oct 23, 2010 1:28 pm

I had angios in July, follow up ultrasound just a few days ago.....no improvement in symptoms but acc. to the sonogram. excellent blood flow from the brain....Doctor said there may be a narrowing up high in th R jug. that he can't do anything about.. the azygos was opened in July but not checked in the follow up exam because "only 14% of previously stenosed azygos' need re-treatment. Maybe, I'm one of the 14%? who knows? Well, I am to go back in 6 months for another sonogram.???? He says that all the tiny veins form the spinal cord can't be treated, a least not now. He explained that everyone is on the learning curve right now..and maybe when more is known.,more success stories will surface!?
I do hope further research reveals more effective, universal treatments.
I''ll be waiting ........................................................................................
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Postby David1949 » Sat Oct 23, 2010 1:34 pm

The claims reported by some doctors are that about 1/3 of patients see significant improvement. There are estimated to be 400,000 MS sufferers in the US. Maybe 1/3 of those will test negative for CCSVI. That leaves 266,000 who test positive for ccsvi. If 1/3 of those can see significant improvement that would leave 88,000 people who could see significant benefits from angioplasty. Seems like a good thing to me. I'd rather see 400,000 totally cured, but 88,000 with significant improvements is definitely a step in the right direction.

You can argue about the exact numbers I've used but I think whichever way you slice it there are many people who can benefit enormously from liberation. My hope is that since Dr. Zamboni opened the door to a new area of research the understanding will increase quickly. This is a much more encouraging endeavor than expecting the drug companies to come up with a cure when they are not even financially motivated to do so.
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Postby Cece » Sat Oct 23, 2010 2:18 pm

David, remember, that's an anecdotal estimate by one doctor, Dr. Siskin. It all needs to play out in the research along with the question of if the wow results are durable over time. I agree with the excitement and optimism behind your post but also note that this is a thread specifically to discuss the other end of the spectrum: the third that Siskin estimates did not show improvments.
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Postby Lyon » Sat Oct 23, 2010 10:04 pm

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there's more to the story

Postby Rosegirl » Sun Oct 24, 2010 5:38 am

Does anyone know roughly how many people have had venograms around the world? And of those people, how many have had more than one?

There are a lot of things that skew the statistics for great improvement downward. For example, the earliest procedures done probably used more conservative approaches. We are already hearing about doctors who now look at more veins in each patient. Our doctors are also finding more problems to fix as they become more proficient in locating problems.

The success rate is also lowered by places like Georgetown that just stopped treating people when they didn't see enough benefit in their patient population.

Hopefully, the patient registry will soon capture enough data that we might find that patients are getting better results, at least from the more experienced providers. Then those doctors can pass on their techniques to others so more patients will receive better treatment more quickly.
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Postby astro » Sat Oct 30, 2010 8:21 pm

North52 wrote:there were clear collaterals entering the azygous vein and I suspect one of the collateral may have clotted or otherwise been damaged with ballooning. I think this is an underappreciated risk of the the procedure.

A this point in time, I am much worse than pre-angioplasty, but this is largely the result of an unusually severe exacerbation that I am having at the moment. My EDSS seems to be decreasing day by day. Presently on steroids that are not making a difference...

...I have not yet given up on angioplasty and I am booked in about two weeks to try and open up the 100% occlusion of my left brachiocephalic. Chances of getting though, however seem slim. Just hope I make it to that point with some remaining mobility.

North


I agree. It sounds like our experiences have followed a similar path. My venogram showed significant collaterals bypassing a blockage at my left brachiocephalic/IJV/subclavian. (My post-op report stated that I had a web-like fibrous structure at that location.) Once ballooned, the collaterals disappeared and my symptoms were better for a week or so after the angio.

My symptoms have steadily returned and declined in the six months since my procedure. I have been on a drug holiday from Rebif since that time, as well, so I guess that could be part of the reason for the decline. However, some new symptoms after the procedure lead me to believe it has to do with either 1) only fixing part of the problem in my venous system (i.e., missed something) or 2) perhaps temporarily shutting down the collaterals meant that they weren't available to "serve" once I restenosed (i.e., clot, damage, etc.).

The new symptoms I have include pressure/tinnitus in my ear (especially after laying down all night), light-headedness when I do a valsalva, feeling like I'm hanging upside down when I lay on my back, and increased fatigue/spasticity.
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Postby joanp » Thu Nov 04, 2010 12:29 pm

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Postby Vivianne766 » Sat Nov 06, 2010 5:30 pm

I'm also one of the unfortunate 1/3's that saw no improvements.
It's been more than 3 weeks.
:(
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Postby pklittle » Sun Nov 07, 2010 6:57 pm

pklittle wrote:
pklittle wrote:My initial venogram and angioplasty on 3 areas was done in Albany, no benefits realized.

*UPDATE*
8/27/2010

Consulted and tested by a LOCAL FSIR (yeah!) on 8/24/2010. He did a thorough job using venogram to check my lower veins for MT and also the IJR, vena cava, illiac (don't know all the names). They entered from both sides. All was flowing great except for my left IJR which is a whole mess of collateral veins that he couldn't get the catheter by to check any further up or do angio. They provided me with a DVD of the entire test and written report as well.
The sad part is, nothing can be done. I guess I'm done. CCSVI got me.


*UPDATE*
9/25/2010

I have learned that my second venogram report is INCORRECT. The doctor was in the WRONG VEIN... thought he was in the left IJV when in fact he was in a smaller vein next to it. Sooooo, my left jug is not as messed up as I have been thinking it was for about a month.
Someone stop this merry-go-round. I wanna get off.


**UPDATE** 11/7/2010

Had an ultrasound of my left jug last Friday. It confirmed that the doctor was NOT in the wrong vein in my followup venogram. So what this means is my left jug has restenosed and grown collaterals since June.
I don't have a clue at this time what the next step is. I'll keep you posted.
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Postby Cece » Sun Nov 07, 2010 7:30 pm

Pklittle, what a mess, multiple venograms, different IRs...hope it gets squared away soon.
Vivianne766 wrote:I'm also one of the unfortunate 1/3's that saw no improvements.
It's been more than 3 weeks.
:(

Vivianne, I'm sorry to hear this. :(
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Postby L » Mon Nov 08, 2010 8:54 am

Vivianne766 wrote:I'm also one of the unfortunate 1/3's that saw no improvements.
It's been more than 3 weeks.
:(


Let's hope you are one of the other 1/3rd who sees improvements within six months..
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