This Is MS Multiple Sclerosis Community: Knowledge & Support

I've heard now from two sources (patients treated at PI) that they're being told the clinic is seeing 0% restenosis (100% success rate).

There are so many patients here at TIMS who have been treated there, we could look into this fairly easily.

It would be fantastic if true and it's not completely unheard-of, we've been quoting Dr. Sinan's 98% figure for awhile.

IF YOU WERE TREATED AT PACIFIC INTERVENTIONALISTS, will you let us know if you've experienced restenosis? If you had improvements and then lost them, that may be a sign of restenosis. Thanks!

I saw that too - don't they destroy the valves? I thought valves could grow back and possibly assist in re-stenosis? I may be confused, it wouldn't surprise me! Now I'm curious and may have to look into that...

It's hard for me to answer this poll. I was the first CCSVI patient at PI and had restenosis of the IJVs after my first procedure in June. However, I had a second procedure in August with much bigger balloons (up to 20 mm) and don't seem to have any restenosis after almost 4 months.

When and how are they measuring restenosis? I'm not going back for my 6-month follow-up until February, so who is being measured and how? I think PI started using bigger balloons after the NY symposium, but that is still only 5 months ago.

I am not sure how I would be able to tell.

From what I understood there is no "follow up" as we know it, unless we choose to undergo venography again.

Unless one can estimate by disappearance / reappearance of symptoms, but that is if one HAD change in symptoms (I didn't. Yet?)

Val, let's count since the symposium. The big balloons are what Sinan uses too, maybe it is keeping restenosis lower. NF, good point, but I think if someone strongly suspects they have restenosis (improvements vanished, have returned to feeling how they did before the procedure) that will have to count. It's not perfect but I won't be submitting this to any journals for publication....

I know anecdotally of one possible restenosis case from PI, I don't know of any others yet. We know a lot more about results from Dr. Siskin's group! I wonder if there'd be any interest in a poll for them? It might help people going into this to know what the odds of restenosis have been. Our old figures from Dr. Zamboni are outdated, I think, because of the new techniques.

OK, Cece, I'll answer the poll with my 2nd results.

NotFound, I'm going in for a follow-up visit at 6 mos. I don't know if Dr Arata will do MRV, US, or just a consult. That's why I was wondering how the "no restenosis" claim was being made. If it's just based on maintenance of improvements, I can back them up.

How about a poll for all the known liberation providers? Hmmm this could get confusing. The big balloon vs small balloon issue could factor into this. Maybe doctors who have been doing this for a long time started with small balloons and had high rates of restenosis but switched to large ballons and now see a reduced rate. That could bias the result against doctors who have been doing this for a year or more.

See, nothing was ever said to me regarding follow up! Is this something I should have insisted on?

no stenois to date...........2 months

when I asked, Dr.Arata about follow up
his answer was, you will know, compare it to the before and after effect......
if your symptoms return, .........then you re-stenoised

I asked about, Ultra sound, etc for follow up..........he shoke his head not necessary

But, I am doing the following up with an Ultra sound.........3 months, then 6 months

I have a stent in LJV

I'd appreciate a PM from anyone that's been treated at Pacific Interventionalists if you have the time, just have a few questions is all on someone else's behalf, investigational stuff not a fault finding mission... Thanks!

Mark

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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

I had a secondary procedure at DelMar vein clinic in San Diego 2 weeks ago. Up to that point they had an approximate restenosis rate of around 10% or so over the first 6 months of just over 100 patients. Everyone who had reverted back to previous symptoms were all found to have benefitted from a second procedure as they had all restenosed.
I have had benefits also and will post in a separate post. 14 mm ballons were used in my ijv's both times.

I was treated at Del Mar and actually felt worse after the procedure but decided not to undergo a second procedure. So their numbers may be a bit off.

I just had my procedure done at PI two days ago. I'll let you guys know if I have any restenosis. Good luck to everyone!

I had the CCSVI surgery at P.I. in Sept.2010. I don`t think I have had a re-stenosis but no improvements what so ever to date. I was treated wonderfully by Dr.Arata and staff. No regrets what so ever............Maybe only time will tell the real answer.

Does the size of the balloon selected depend on the size of the patient? If so, the term "big balloon" is kind of subjective, isn't it?