How many times have you had venoplasty for CCSVI?

David1949 · Post by **David1949** » Fri Mar 16, 2012 8:44 am

dania · Post by **dania** » Fri Mar 16, 2012 8:51 am

Great question. I had it done twice and all 3 vein became blocked and I tried 3 more times to have angioplasty but both doctors could not get the catheter in. My veins had died with the lack of blood flow.

DougL · Post by **DougL** » Fri Mar 16, 2012 9:11 am

i voted for 2 but need to explain.

proc. # 1 was done when CCSVI was just beginning. the doc did the best he could with the knowledge he had. things were missed which lead to procedure #2

Cece · Post by **Cece** » Fri Mar 16, 2012 11:18 am

Twice for me.
Until the procedure is standardized, we won't know if repeat procedures are due to inadequate treatment or if we will always have vein disease that will recur. Complications should also be reduced as the procedure is perfected and standardized.

During my second procedure, a 70% restenosis was found in my previously 99% stenosed left vein. Presumption was that this was residual valve material. There was a presentation by Dr. Al-Omari (and I know I spelled that wrong) at ISNVD about the different morphology of jugular valves. Elongated was one of them, and maybe people with elongated valves are going to be more likely to restenose. There is so much yet to learn.

One goal for the doctors is to prolong the time in between procedures, so that a repeat procedure might not be needed for another 2 - 3 years.
Personally I'd get another procedure today if I needed one. I've only had good results. Today was 75 degrees and I was outside in the sun and not worried about when I would collapse and need to get inside. We came in after an hour and a half because of my son's needs (potty), not my own needs. It is remarkable.

blossom · Post by **blossom** » Sat Mar 17, 2012 9:45 am

one time.

munchkin · Post by **munchkin** » Sat Mar 17, 2012 10:17 am

first time great results but suffered lijv occlusion and 85% scarring on rijv, tried to have lijv reballooned (failed) and rijv reballooned - restenosised 6weeks later. had venography to determine extent of damage and any options. lijv requires a bypass and rijv needs to wait until technology changes.

Thekla · Post by **Thekla** » Sat Mar 17, 2012 12:44 pm

I have been treated twice, Aug 2010 and July 2011. Only minor blockages were found the first time (40 and 15%). The second time both sides were over 80% blocked at the valves. No idea how it could have been missed. I don't see how I could ever be treated again. I just can't afford it. If I could say that I'd definitely be walking, it might be easier to justify, but I don't even have normal bladder function after two rounds. I'll be watching the research.

Donnchadh · Post by **Donnchadh** » Sun Mar 18, 2012 7:03 pm

I have had three procedures done. The first was two years ago when very few had been done. I was Dr. Sichlau's second patient-the results were a dramatic improvement in symptoms. But then re-stenosis after 6 days.

The second attempt was about 4 months later with Dr. Patel at Froedtert Hospital at Milwaukee. He wasn't able to differentiate between the IJV and the massive network of collateral veins so didn't attempt to balloon. But he did make great venograms.

The third attempt was with Dr. Makris, who was following Dr. Sclafani's protocols. He found two problems (valves) and was able to open them up. Follow-up ultrasound showed that they have stayed open BUT I have problems at the sigmoid sinus, which were not treated.

I am saving up for a fourth attempt with the idea of tackling the sigmoid sinus (maybe will need stents?)

Donnchadh

esta · Post by **esta** » Tue Mar 20, 2012 9:23 am

just finished my third time
this one with Dr. Arata in California. He said it was all about the blood flow and to work on that. I've had small improvements well, huge in my world. I'm very happy, and will keep on doing it until they find a cure. I have one more option at this point in time, and if need be, I will go for it. I'm not sure they even know how to resolve this issue between the jawbone and C1. We are working on a mouth guard at this point to see if the vein flows better.

I can't seem to change the poll so I'm writing this...

esta · Post by **esta** » Tue Mar 20, 2012 9:28 am

okay just on the way story, I have now voted..

Donnchadh · Post by **Donnchadh** » Tue Mar 20, 2012 11:13 am

esta wrote:just finished my third time
this one with Dr. Arata in California. He said it was all about the blood flow and to work on that. I've had small improvements well, huge in my world. I'm very happy, and will keep on doing it until they find a cure. I have one more option at this point in time, and if need be, I will go for it. I'm not sure they even know how to resolve this issue between the jawbone and C1. We are working on a mouth guard at this point to see if the vein flows better.

I can't seem to change the poll so I'm writing this...

Would you recommend Dr. Arata?

Donnchadh

David1949 · Post by **David1949** » Tue Mar 20, 2012 7:40 pm

Well we only have responses from 24 people who have been treated. That's a small sample size but it doesn't look like we'll get many more responses.

Of the 24 who were treated, 16 were treated more than once. 8 were treated once. That suggests a restenosis rate of 67% and a patency rate of 33%. Zamboni said he had a patency rate of about 50% at 18 months. Our 33% patency rate could be even lower because we don't know long it has been since those 8 were treated. Those 8 may not have reached the 18 month point yet.

It seems the lesson here is that CCSVI treatment is not a one time treatment.

dania · Post by **dania** » Tue Mar 20, 2012 7:59 pm

Blossom was treated only once but she is now worse than ever.

munchkin · Post by **munchkin** » Wed Mar 21, 2012 4:00 am

I was treated more than once due to complications from the initial treatment. I didn't restenosis I occluded. So the restenosis figure might be higher than necessary if you are looking at true restenosis.

dania · Post by **dania** » Wed Mar 21, 2012 4:10 am

Maybe the questions should be
1) Have you have improvements?
2) Have you kept your improvements?

This Is MS Multiple Sclerosis Knowledge & Support Community