How many times have you had venoplasty for CCSVI?
How many times have you had venoplasty for CCSVI?
Re: How many time have you had venoplasty for CCSVI?
Re: How many time have you had venoplasty for CCSVI?
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
Re: How many time have you had venoplasty for CCSVI?
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.
Re: How many time have you had venoplasty for CCSVI?
Re: How many time have you had venoplasty for CCSVI?
Re: How many time have you had venoplasty for CCSVI?
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
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Re: How many times have you had venoplasty for CCSVI?
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...
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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- Posts: 385
- Joined: Wed Nov 25, 2009 3:00 pm
- Location: Summerland. BC Canada
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Re: How many times have you had venoplasty for CCSVI?
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
Re: How many times have you had venoplasty for CCSVI?
Would you recommend Dr. Arata?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...
Donnchadh
Got MS?.....Get Liberated!
Re: How many times have you had venoplasty for CCSVI?
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.
Re: How many times have you had venoplasty for CCSVI?
Re: How many times have you had venoplasty for CCSVI?
Re: How many times have you had venoplasty for CCSVI?
1) Have you have improvements?
2) Have you kept your improvements?
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