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

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

Postby DougL » Wed Mar 21, 2012 4:41 am

David1949 wrote:Of the 24 who were treated, 16 were treated more than once. 8 were treated once. That suggests a restenosis rate of 67%


anyone can make the numbers look like they want them to (by the way, i am not implying anything with you directly David - i am just showing how the numbers can be played).

simply looking at raw numbers, your calculations are correct. however, looking into the details further, of the 16 - how many actaully had restenosis and how many were undertreated the first time?
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Re: How many times have you had venoplasty for CCSVI?

Postby David1949 » Wed Mar 21, 2012 9:39 am

munchkin wrote: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.


Restenosed or occluded, what's the difference? The impact on you is the same either way. You need to be retreated. BTW if occluded means blood clots, that can be worse than elastic recoil. Those blood clots can be difficult if not impossible to clear. Same for intimal hyperplasia.
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Re: How many times have you had venoplasty for CCSVI?

Postby David1949 » Wed Mar 21, 2012 9:46 am

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



Dania the questions you ask are good ones, but my question is; "How many times have you been treated"?

If people are contemplating venoplasty for CCSVI shouldn't they be aware that they will likely need to be treated more than once? Should that information be withheld from them?

People who have to pay out of pocket might be able to pay for one procedure but 2,3 or 4 procedures might mean bankruptcy.
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Re: How many times have you had venoplasty for CCSVI?

Postby David1949 » Wed Mar 21, 2012 9:58 am

DougL wrote:
David1949 wrote:Of the 24 who were treated, 16 were treated more than once. 8 were treated once. That suggests a restenosis rate of 67%


anyone can make the numbers look like they want them to (by the way, i am not implying anything with you directly David - i am just showing how the numbers can be played).

simply looking at raw numbers, your calculations are correct. however, looking into the details further, of the 16 - how many actaully had restenosis and how many were undertreated the first time?


Dougl you're looking at the same numbers I'm looking at. Do you have a different conclusion than I reached? You suggest that maybe people were undertreated the first time. Maybe so, but the individual still needed to be retreated. And there is no guarantee that anyone getting the procedure today will not be undertreated the first time too.

When I posted my conclusion I guessed it might make me the target of considerable criticism. I can only tell you this; I have MS too and I want to be free of this monster as much as anyone. But we have to operate on facts not on what we wish was true.
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Re: How many times have you had venoplasty for CCSVI?

Postby Cece » Wed Mar 21, 2012 10:09 am

Dr. Sclafani was saying that his employer has agreed in specific situations to allow a second procedure to be performed at no cost to the patient within 90 days of the first procedure. Also subsequent repeat procedures at half cost. Half cost redos are also available with Dr. Arata, if he did the first procedure. So there are some providers with patient-friendly policies on repeat procedures. I agree with David that this is an important question. I am not sure if we can trust the numbers we're getting. We might not be a random sample of everyone who has had it done. Many of the TiMS regulars got involved with CCSVI early, back in 2010 or even 2009. The doctors have been refining their techniques over time.

I would hope that people contemplating CCSVI especially know about the possibility of complications. Simple restenosis may just mean you're out the money and back where you started, but complications may mean that if you don't continue down the path of more procedures, the vein may be lost. And even if you do continue down the path, the vein may be lost!

I was very concerned about complications when I was treated, because of having heard the stories here. The use of IVUS and presciption for true anticoagulants not antiplatelets and going with an experienced provider and smaller balloons with lower pressures and having a one-month follow-up doppler are possible ways to reduce the chances of complications. (The one-month doppler follow-up would be to catch complications early, when something can be done.)
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Re: How many times have you had venoplasty for CCSVI?

Postby DougL » Wed Mar 21, 2012 10:35 am

David1949 wrote:Dougl you're looking at the same numbers I'm looking at. Do you have a different conclusion than I reached? You suggest that maybe people were undertreated the first time. Maybe so, but the individual still needed to be retreated. And there is no guarantee that anyone getting the procedure today will not be undertreated the first time too.


i was only commenting on your post where you said "restenosis rate of 67%". my partner is one of the treated more than once but it was not because of restenosis.

if she was treated by Dr. S the first time, she would be under the column "treated once" and your restenosis rate would no longer be 67%.

later you say any kind of retreatment and that is correct. she was treated twice but she did not have restenosis - in fact Dr. S verrified that the first procedure results were still there. stuff was missed.

so my confusion is in the word restenosis. what i should have read is 67% need retreatment for some reason including but not limited to restenosis. yes 67% is not acceptable.

also, in my opinion, there is a way to ensure you will not be undertreated - use IVUS.

i apologize for sounding like i was attacking you. that is not my intent and I am sorry.
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Re: How many times have you had venoplasty for CCSVI?

Postby 1eye » Wed Mar 21, 2012 1:17 pm

To use the results of people who were among the first to have the procedure is a bit unfair to the IRs. We have tens of thousands of results to look at. I'm sure we can do better than 24! I'd certainly not stake my treatment plan on that study, even if it's peer-reviewed.
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Re: How many times have you had venoplasty for CCSVI?

Postby David1949 » Wed Mar 21, 2012 1:26 pm

DougL wrote:
David1949 wrote:Dougl you're looking at the same numbers I'm looking at. Do you have a different conclusion than I reached? You suggest that maybe people were undertreated the first time. Maybe so, but the individual still needed to be retreated. And there is no guarantee that anyone getting the procedure today will not be undertreated the first time too.


i was only commenting on your post where you said "restenosis rate of 67%". my partner is one of the treated more than once but it was not because of restenosis.

if she was treated by Dr. S the first time, she would be under the column "treated once" and your restenosis rate would no longer be 67%.

later you say any kind of retreatment and that is correct. she was treated twice but she did not have restenosis - in fact Dr. S verrified that the first procedure results were still there. stuff was missed.

so my confusion is in the word restenosis. what i should have read is 67% need retreatment for some reason including but not limited to restenosis. yes 67% is not acceptable.

also, in my opinion, there is a way to ensure you will not be undertreated - use IVUS.

i apologize for sounding like i was attacking you. that is not my intent and I am sorry.



I'm sorry. I guess I'm getting a little touchy in my old age. Still friends?
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Re: How many times have you had venoplasty for CCSVI?

Postby DougL » Thu Mar 22, 2012 4:27 am

David1949 wrote: Still friends?


yes of course. we have enough enemies already with this horrible disease.
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Re: How many times have you had venoplasty for CCSVI?

Postby David1949 » Thu Mar 22, 2012 9:34 am

DougL wrote:
David1949 wrote: Still friends?


yes of course. we have enough enemies already with this horrible disease.


I agree my friend.
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Re: How many times have you had venoplasty for CCSVI?

Postby esta » Thu Mar 22, 2012 1:30 pm

hi Donacha...
sorry I'm so late in answering you. Yes, a resounding yes for Dr. arata and his team. To them, it's all about the valves and the blood flow and I am a strong believer it's not just that the veins. I figure if my veins have a restenosis, my valves are still open because they tear them when they angioplasty.
Check it all out @ synergyhealthCenter.com
best of luck
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26/08/10 stent RJV
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Re: How many times have you had venoplasty for CCSVI?

Postby Billmeik » Mon Mar 26, 2012 2:04 pm

twice. Once in poland and once in california.
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Re: How many times have you had venoplasty for CCSVI?

Postby David1949 » Mon Apr 16, 2012 6:33 pm

Well according to Dr. Hewett; ALL VEINS WILL RESTENOSE. It's not a matter of "if" -- it is a matter of "when." Restenosis generally occurs after 4-6 months and usually much later (12-18 months) and is a very gradual process taking many months before total restenosis happens. He said that if symptoms return before the 4-6 month period, it is a matter of undertreatment and not restenosis.
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Re: How many times have you had venoplasty for CCSVI?

Postby David1949 » Mon Apr 16, 2012 6:37 pm

BTW I think it was Dr. Sinan who said he was getting very low restenosis rates by ballooning the valves until they burst. I think he said the rate was about 3%. Whatever happened to that? Did that turn out to be not the case, or did it cause other problems?
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Re: How many times have you had venoplasty for CCSVI?

Postby magoo » Mon Apr 23, 2012 10:15 am

Three times for me, but not only because of restenosis, but because of missed blockages too.
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