This Is MS Multiple Sclerosis Community: Knowledge & Support

I am thinking, if or when I proceed to have the treatment, I'd prefer to have stents put in bc of the fear of restenosis. If I go to New York, that's a distance from where I live, (winnipeg, canada) and being in a wheelchair this long, 8 years, I just don't want any potential improvements to disappear. Course it might not even matter... Any thoughts anyone?

I am also from Winnipeg. I am going to Egypt for the procedure in two months. I am hoping that the balloon will be sufficient in case there is any future trouble with the stent. However, if it is obvious that the balloon will be insufficient, I would definately get a stent. I am confident that there will be treatment available locally to address future concerns...the question is when???

What about blood clots? I am thinking if there is a problem, then I'll just go to my GP, of course there is the MS clinic, but they weren't to receptive to tthe whole ccsvi...How is your mobility? Mine stinks, a wheelchair 8 years, not good. Can't walk but not paralyzed though...

This is the first I've heard of treatment being available in Egypt! Excellent.

I've decided to not go for stents, because I believe there will be venous stents on the market within the next five years. Also I'm okay with travelling twice if need be to get angioplasty a second time inthe event of restenosis...but then I'm expecting to travel to NY and have the procedure covered by insurance, so those are different circumstances.

Lots of people seem very happy with their stents, so it's probably not a bad decision, I'm just cautious because we don't know the long-term prognosis of those stents and because, once in, they're in permanently. The neck has lots of flex in it so it puts the stent under a lot of stress over time. I think the Dr. Sclafani index thread has a link to what he's had to say about stents, which is always worth reading.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I cant afford to go to Egypt twice...I cant really afford to go once to be honest! Both my husband and I are booked for the procedure at the same time...so twice the price right there! We are both mobile using elbow crutches, but it is getting more and more difficult. My husband in particular is going downhill fast. I really believe that CCSVI treatment will be come "the norm" here in Canada eventually. However, in the meantime, I am concerned about having a stent before they are sure how to treat any potential problem. I think they would be better equipped to deal with a blod clot. I agree that I would avoid the MS Clinic for follow up.

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I have had the operation in Bulgaria, only been a week since I had it done.
I had decided in advance that it would be up to the doc to decide wether stents or balloons were the best option for me. I ended up with ballooning on both IJVs and a stent in the Azygos veine.

The azygos normally doesnt need stenting, it normally responds well to beeing pumped open, and it is normally a long lasting result. But not for me, so that was unexpected. I had a critical stenosis of 90%, and you could see the blood wasn't moving at all. If I had objected to the stent beeing put in, I would have left the surgery with the same poor bloodflow as when I came in.

The doc ballooned the jugulars, they responded imediatly, it was smaller blockages, 50% and 70%, he said they didn't need stents, so who am I to argue with him.

But I was the same as you, thinking about restenosis, about what would be the best option etc. It is much easier to just let the doctor decide, but you could let him know about your concerns about finances and restenosis, so he can stent if he is in doubt.

In Egypt isn't it the same doctors running the clinic there fot international patients that is doing the big stuty in Kuwait? I'm sure they are well experienced and knows what they are doing

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<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>

We were both diagnosed prior to meeting. My 10-year marriage ended within 1 1/2 years of diagnosis. His 17-year marriage ended within 3 years of diagnosis. I am always amazed to see so many supportive "healthy" spouses on here. I have read that 80 % of all relationships end when one of the partners is diagnosed with a chronic progessive disease.

And on a happier note...yes the same doctors run the clinic in Egypt as are doing the study in Kuwait!

just a quick note. i don't think we have a choice...its always a balloon unless it doesn't hold, then they stent. i was prepared to tell them i wanted a stent, same reason-restenosing-but no choice...

I'm in the same boat as you Cece.
What do you do in the case they balloon it and it collaspes immediately? Dr. Siskin says he will stent it.
I'm 46 and not sure I want a stent but may not have a choice.
This is the only scenario/thing I worry about. Take a stent or to not take a stent.
Do you walk out with a bad jugular or two and wait for better, tested, approved vein stents??
Hmmm, what to do?