Does anyone know how many times you could have CCSVI done?

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

Does anyone know how many times you could have CCSVI done?

Postby lifeisgood » Sat Jul 30, 2011 5:54 am

Is there a limit? If there is, than my husband might wait a little longer and watch from the sidelines.
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Postby dania » Sat Jul 30, 2011 10:37 am

Wait. Many who get another procedure report that they do not get improvements like the first time. Plus, everytime you run the catheter in the vein it does a little damage, hence scarring. All my 3 veins are 100% blocked with scarring.
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Postby cheerleader » Sat Jul 30, 2011 10:45 am

Patients should see one doctor for treatment of CCSVI. Patients need an ongoing relationship with their doctor, and this should be with a local doctor who is available for follow up. They will advise their patients on how to proceed, if restenosis becomes an issue. Medical tourism and going to different locations for repeated procedures is not a good idea.
until a local, reputable doctor can care for your husband, I'd suggest waiting, life--
hope he's doing OK,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Does anyone know how many times you could have CCSVI don

Postby drsclafani » Sat Jul 30, 2011 11:38 am

lifeisgood wrote:Is there a limit? If there is, than my husband might wait a little longer and watch from the sidelines.


There is no published data on how many times a healthy vein with a valvular stenosis can undergo angioplasty. My experience is that recurrent symptoms are usually not due to scarring of the vein adjacent to the valvular stenosis. In most situations the valve restenosis or was never adequately treated by a angioplasty of sufficient size to open it fully. Even then, the valves have a tendency to restenose. However as i said, the adjacent vein is usually not restenoses. The other cause of failed angioplasty is thrombosis of the vein caused by too large a balloon size,r by inadequate anticoagulation or a lack thereof. unnecessary use of a stent or by treating hypoplasia aggressively.

Whether another treatment is warranted depends upon how severe are the symptoms and whether prior treatment resulted in substantial improvements.

Good luck

DrSclafani
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Postby Cece » Sat Jul 30, 2011 1:02 pm

cheerleader wrote:until a local, reputable doctor can care for your husband, I'd suggest waiting, life--

If lifeisgood is from Chicago, there are a number of good CCSVI IRs in Chicago.

Dr. Siskin advises caution before having multiple procedures. One or two is ok, according to him. Dr. Sclafani has said that he is not seeing injury to the vein walls, which would lend credence to the belief that multiple procedures do not inherently cause harm. My own experience has been that, three weeks after my second procedure, I am doing better than I was after the first procedure.

It's a personal choice whether to go now or to wait. We are still pioneering, even if it is a few years now after the initial ccsvi pioneers set out. There is more to be learned yet there is more known now than there has ever been. Wishing you and your husband good health no matter what choice you make.
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Postby lucky125 » Mon Aug 01, 2011 12:14 pm

I can say from personal experience that it can be done at least 4 times. I was treated by the same doctor (Ziv Haskal) the last three times. He is very conservative, and each time there was restenosis at the valve on both sides.

My most recent treatment was almost 3 months ago, and I am going great. Each time I am treated the benefits last longer and longer. We will have to see how long this one lasts. I'm hoping for years, but we will just have to wait and see.

I completely agree with Cheerleader that sticking with the same doctor is crucial. Dr. H. has my previous studies up on screens each time, so he knows what has changed, and how best to treat me. I am very lucky to have this exceptional doctor close to home.

Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby Cece » Sun Aug 07, 2011 2:33 pm

www.hubbardfoundation.org/ccsvi-restenosis

The Hubbard Foundation is saying that you can only have 3 - 4 venoplasties before considering a stent.

This is added to Dr. Siskin's thought that we should be cautious about having more than one or two procedures. And Dr. Arata's thought that the best outcome is possible with the first procedure. We do not know what these doctors have seen that led them to consider these conclusions.
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