i'd like to hear from someone who had it year ago or so

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

i'd like to hear from someone who had it year ago or so

Postby ykonstan » Wed Dec 22, 2010 1:15 pm

I'm going to have my ccsvi procedure on december 28 in Albany and i contact thru emails with 2 ladies who had angyoplasty 2 month ago. Both of them don't feel good. all their symptoms came back after short improvment and i'm very disappointed and upset and not sure i want to have it at all. Please reassure me.
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Postby eric593 » Wed Dec 22, 2010 2:21 pm

Check the Tracking thread at the top of the forum along with the thread up there about people who the procedure did NOT help.

Estimates are about 1/3 of people aren't helped. Then there's roughly 50% re-stenosis rate. We have no idea long term how anyone will fare.

If you were counting on a "miracle", maybe you are right and you should wait until we know where this "fits", if anywhere, in MS.

Odds are you will NOT see dramatic results from the procedure. Do your research before undergoing the procedure, have a realistic view of what is known thus far. It is not without risks.
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Postby Cece » Wed Dec 22, 2010 3:02 pm

Here's CUREious's thread, with updates along the way. He was treated over a year ago and is doing very well:
http://www.thisisms.com/ftopic-7822-0.html

But eric is right, there are no guarantees. It's riskier when done out-of-pocket if a repeat procedure is out of reach financially. It's riskier when done without follow-up visits or proper anticoagulation afterwards. I'd say it's riskier when done by an inexperienced provider. (Siskin's group in Albany is experienced, so that part is good.)

My own symptoms are explained so well by CCSVI theory, I cannot wait for my turn to come.
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Postby Lyon » Wed Dec 22, 2010 3:21 pm

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Last edited by Lyon on Sun Nov 20, 2011 4:53 pm, edited 1 time in total.
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Postby CureIous » Wed Dec 22, 2010 11:41 pm

Lyon wrote:And to round things out with a look at the other end of the spectrum http://www.thisisms.com/ftopic-15030-0.html

At this point no one can say that is going to become of the theory of CCSVI in the future and the only certainty is that it went viral on the internet worldwide long before even the most minute thing about it is certain.


For sure, wouldn't want those threads buried since August getting too much airplay, that could be dangerous to the spectral equilibrium. Talk about OT, I believe the direct question was "one year or more" not "bad vs good" experiences. Maybe I'll start bumping my thread weekly now just to "even things out".
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Lydia_S » Thu Dec 23, 2010 3:38 am

Cece wrote:Here's CUREious's thread, with updates along the way. He was treated over a year ago and is doing very well:
http://www.thisisms.com/ftopic-7822-0.html

But eric is right, there are no guarantees. It's riskier when done out-of-pocket if a repeat procedure is out of reach financially. It's riskier when done without follow-up visits or proper anticoagulation afterwards. I'd say it's riskier when done by an inexperienced provider. (Siskin's group in Albany is experienced, so that part is good.)

My own symptoms are explained so well by CCSVI theory, I cannot wait for my turn to come.


I must agree with Cece. These are the 3 things you must have in your favour. Whatever happens I believe that you should give it a chance
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Postby Rokkit » Thu Dec 23, 2010 9:04 am

CureIous wrote:Maybe I'll start bumping my thread weekly now just to "even things out".

Exactly. Sheesh that strategy is so tired, and so obvious. One of the reasons I hang out here so infrequently anymore unfortunately.
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Postby soapdiva884 » Thu Dec 23, 2010 9:08 am

Rokkit wrote:
CureIous wrote:Maybe I'll start bumping my thread weekly now just to "even things out".

Exactly. Sheesh that strategy is so tired, and so obvious. One of the reasons I hang out here so infrequently anymore unfortunately.


YOU TOO? ME TOO!!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby Cece » Thu Dec 23, 2010 10:15 am

Both initial responses emphasized the risks. I was actually uncomfortable with the request of "Please reassure me," because that's not what we should be doing, this is a decision that needs to be made with full awareness of the potential benefits and potential risks and really just how early on the docs are in the whole discovery process.

Going forward with treatment at this time or choosing to not go are both reasonable choices, given what we know and don't know at this time.
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Postby L » Thu Dec 23, 2010 3:35 pm

Sorry, not a year b ut I had my procedure twenty one days ago.

I don't think thjat I'm a candidate for the placebo effect - MS has made me more and more pessimistic over the years, I dreamt of spectacular improvements but I thought the most likely outcome was that I felt nothing since my disease is relatively advanced. Also I have taken drugs in the past for which I had high hoped but which did nothing for me. Whatsmore the procedure left me with a thrombosis of the left jugular vein which made me despondent - I really wasn't expecting much (incidentally, the thrombosis probably hasn't cleared yet - I see a vascular specialist soon to work find out.)

Since the procedure spasticity which would effect my hands when I am tired has disappeared completely, choking on food and drink, trouble swallowing when eating and drinking has disappeared completely and, surprisingly perhaps, motion sickness has gone. As my MS progressed car sickness got worse and worse, to the point where it would take me a pretty long time to recover from a short journey. Well, it went, completely. I could travel all day in a van on a bumpy road with my eyes shut no problem!

I am convinced that it's real. I went to Dr Tariq in Alexandria, Egypt since the agressive techniques that he uses means a low restonosis rate and he definitely does not undertreat the azygous vein as many IRs seem to.

In my opinion you are definitely making the right choice.

Oh, and Lyon, get the procedure done yourself and at least you'll be able to talk from experience. You wonder what will become of CCSVI in the future, well, believe me, it is guaranteed to become a standard treatment for MS patients. Why do I think this? Because I know it works. I know.
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Postby Cece » Thu Dec 23, 2010 3:53 pm

Here's a link also to a one-year update by cheer:
http://www.thisisms.com/ftopicp-143792.html#143792

I am currently scheduled and, insurance be willing, will be treated by the end of January 2011, so I'll have my one-year update ready by January 2012. :D
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Postby L » Fri Dec 24, 2010 4:04 am

I didn't really make it clear, why I think that I am not a candidate for the placebo effect.

I believed that the CCSVI treatment would more than likely do me no good, given the state that I am in. And then when I realised I had thrombosis, and I couldn't see any immediate benefits directly after the procedure, I stopped thinking about it all together and pessimistically assumed that I was one of the unlucky group who feel no benefit from treatment. However I felt benefits.

Some years ago I was encouraged to take baclofen, first by my neurologist, then, after refusing it for twelve months, by my GP, MS nurse and family. I was quite sure that I'd be adversely affected by the side effects and I wasn't excited about taking drugs regularly. Finally I caved in and I took it after having convinced myself that I would see great improvements, walking more fluidly and experiencing less muscle ache.

So, with much trepidation, I took it. Of course, it did nothing. No side effects, no benefits, I increased the dose. Nothing.

It was much the same story with Rituximab. I was scared of the possibility of a bad reaction to the drug (and when it's bad it's very bad) but was enthusiastic as to the possibility that my body would be given the chance to repair a bit. I also believed that I would not suffer my seasonal spring relapse. Unfortunately my expectations weren't met I had an, albeit mild, relapse the following spring and I didn't feel many benefits.

So here I am. Two treatments which I wholeheartedly believed would work which gave me no immediate benefit and one which I believed probably would not do anything for me, and then became convinced that it had done nothing for me, which subsequently turned out to have significant effects. That's why I believe myself not to be a good candidate for the placebo effect.
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