How many times have you had venoplasty for CCSVI?

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

How many times have you had venoplasty for CCSVI?

Have not had venoplasty
6
15%
Once
13
33%
Twice
11
28%
Three times
6
15%
More than three
3
8%
 
Total votes : 39

How many times have you had venoplasty for CCSVI?

Postby David1949 » Fri Mar 16, 2012 9:44 am

How many times have you had venoplasty for CCSVI?
Last edited by David1949 on Sun Mar 18, 2012 9:58 pm, edited 1 time in total.
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Re: How many time have you had venoplasty for CCSVI?

Postby dania » Fri Mar 16, 2012 9:51 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.
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Re: How many time have you had venoplasty for CCSVI?

Postby DougL » Fri Mar 16, 2012 10:11 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
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Re: How many time have you had venoplasty for CCSVI?

Postby Cece » Fri Mar 16, 2012 12:18 pm

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.
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Re: How many time have you had venoplasty for CCSVI?

Postby blossom » Sat Mar 17, 2012 10:45 am

one time.
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Re: How many time have you had venoplasty for CCSVI?

Postby munchkin » Sat Mar 17, 2012 11:17 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.
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Re: How many time have you had venoplasty for CCSVI?

Postby Thekla » Sat Mar 17, 2012 1:44 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.
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Re: How many time have you had venoplasty for CCSVI?

Postby Donnchadh » Sun Mar 18, 2012 8:03 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?)

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Re: How many times have you had venoplasty for CCSVI?

Postby esta » Tue Mar 20, 2012 10:23 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...
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Re: How many times have you had venoplasty for CCSVI?

Postby esta » Tue Mar 20, 2012 10:28 am

okay just on the way story, I have now voted..
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Re: How many times have you had venoplasty for CCSVI?

Postby Donnchadh » Tue Mar 20, 2012 12:13 pm

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?

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Re: How many times have you had venoplasty for CCSVI?

Postby David1949 » Tue Mar 20, 2012 8:40 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.
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Re: How many times have you had venoplasty for CCSVI?

Postby dania » Tue Mar 20, 2012 8:59 pm

Blossom was treated only once but she is now worse than ever.
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Re: How many times have you had venoplasty for CCSVI?

Postby munchkin » Wed Mar 21, 2012 5:00 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.
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Re: How many times have you had venoplasty for CCSVI?

Postby dania » Wed Mar 21, 2012 5:10 am

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