third procedure?

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

third procedure?

Postby javabean » Thu Feb 10, 2011 11:23 pm

I'm curious if anyone has had a third procedure. I am having someoene look at my scans from the previous two procedures and am therefore thinking about a third. I had good success almost immediately after the first, which went away, and is why I had the second. I just feel like those benefits I saw were not placebo and there must be something to this.
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Postby MarkW » Fri Feb 11, 2011 3:45 am

I think Gici (one of the really early adoptors has done 3). I am hoping 2 could be enough but there are so many new findings who knows. The TIMS search facility works well !!

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Re: Search on Gici

Postby scorpion » Fri Feb 11, 2011 5:39 am

MarkW wrote:I think Gici (one of the really early adoptors has done 3). I am hoping 2 could be enough but there are so many new findings who knows. The TIMS search facility works well !!

MarkW


I am not a vascular specialist but something tells me people should be very careful about having their veins manipulated numerous times. Maybe this a question for Scalfani but it would seem the chances of veins collapsing and being permanently damaged would correlate with the number of times they are manipulated. Of course people should not be pondering whether the need to have angioplasty numerous times might mean the procedure does not work. Such a thought would ensure they spend eternity with the other skeptics down below in an eternal hell fire. 8O At least that is what has been incinerated, I mean insinuated!
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Postby bigfoot14 » Fri Feb 11, 2011 6:05 am

Donnchadh has had three done
this link describes his third procedure
http://www.thisisms.com/ftopict-15090.html

The Dr we are seeing for my wife's procedure feels that 2-3 procedures will be OK,,based on his experience with ballooning other areas of the body multiple times (I think it was the kidney veins of Dialasis patients)
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Postby scorpion » Fri Feb 11, 2011 6:15 am

bigfoot14 wrote:Donnchadh has had three done
this link describes his third procedure
http://www.thisisms.com/ftopict-15090.html

The Dr we are seeing for my wife's procedure feels that 2-3 procedures will be OK,,based on his experience with ballooning other areas of the body multiple times (I think it was the kidney veins of Dialasis patients)


I hear you bigfoot. My GUESS is that 2-3 procedures may be ok as well but ultimately we are in uncharted territory and I guess no one can say for 100% certainty even if one procedure is safe in the long run.
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Postby CCSVIhusband » Fri Feb 11, 2011 6:48 am

Lucky125 has had 3 procedures ... you can read her blog (she posts links to it on here occasionally).

1 at Georgetown, 2 by Dr. Ziv Haskal ...

She had great results after procedure 1 and procedure 2 ... and after procedure #3 her results are now holding for the longest length of time yet (I believe that was her post on Groundhog's day).

Search for her name as author, and find her blog. It is worth reading the kind of things that can happen from simple angioplasty of the veins.
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Postby scorpion » Fri Feb 11, 2011 7:23 am

CCSVIhusband wrote:Lucky125 has had 3 procedures ... you can read her blog (she posts links to it on here occasionally).

1 at Georgetown, 2 by Dr. Ziv Haskal ...

She had great results after procedure 1 and procedure 2 ... and after procedure #3 her results are now holding for the longest length of time yet (I believe that was her post on Groundhog's day).

Search for her name as author, and find her blog. It is worth reading the kind of things that can happen from simple angioplasty of the veins.


I have read lots of great results and some terrible results. Go get the veins in your neck manipulated three different times and then come back and tell me about "the simple procedure".
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Postby Lyon » Fri Feb 11, 2011 7:35 am

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Last edited by Lyon on Sun Jun 26, 2011 6:38 am, edited 1 time in total.
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Postby bigfoot14 » Fri Feb 11, 2011 7:47 am

scorpion wrote:
I hear you bigfoot. My GUESS is that 2-3 procedures may be ok as well but ultimately we are in uncharted territory and I guess no one can say for 100% certainty even if one procedure is safe in the long run.


I sort of agree with you, which is why we are seeing a Dr who is VERY conservitive in his treatment....uses IVUS to measure the vein on both sides of the stenosis, then uses a balloon of the same size....

and as I said earlier, the Dr feels that multiple balloonings are not a problem, based on his 25 years as an IR and re-ballooning the same veins multiple times in dialysis patients using this technique
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Postby Donnchadh » Fri Feb 11, 2011 8:18 am

bigfoot14 wrote:Donnchadh has had three done
this link describes his third procedure
http://www.thisisms.com/ftopict-15090.html

The Dr we are seeing for my wife's procedure feels that 2-3 procedures will be OK,,based on his experience with ballooning other areas of the body multiple times (I think it was the kidney veins of Dialasis patients)


Yes, I have did it done three times, by three different IR's. I have not had any adverse effects from these treatments, but then no stents were implanted.

Because I am progressive for twenty years, and 62 years old, I felt that I didn't have a lot of time to wait. My walking was getting so bad, I was reluctantly coming to the realization that I needed to use walker.

Anyone getting treated today for the first time is benefiting from "best practices" being generated by the top IR's. If Dr. Sclafani's more "aggressive" techniques had been used the first time, I probably would have needed only one procedure.

I consider myself one of the lucky ones; only improvements, no problems.

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Last edited by Donnchadh on Fri Feb 11, 2011 8:38 am, edited 1 time in total.
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Postby CCSVIhusband » Fri Feb 11, 2011 8:24 am

scorpion wrote:
CCSVIhusband wrote:Lucky125 has had 3 procedures ... you can read her blog (she posts links to it on here occasionally).

1 at Georgetown, 2 by Dr. Ziv Haskal ...

She had great results after procedure 1 and procedure 2 ... and after procedure #3 her results are now holding for the longest length of time yet (I believe that was her post on Groundhog's day).

Search for her name as author, and find her blog. It is worth reading the kind of things that can happen from simple angioplasty of the veins.


I have read lots of great results and some terrible results. Go get the veins in your neck manipulated three different times and then come back and tell me about "the simple procedure".


I'm not saying it's not procedure in which there is no risk. There absolutely is. Is it the same risk as having bypass surgery? No, not even close.

All I can go by is the doctors I've talked to about the CCSVI procedure. They say it's relatively simple ... considering other procedures.

Dr. Sclafani has said as much, as have other doctors.

re the number of times ... well, I've heard dialysis patients having their veins ballooned every few months (up to 6 times annually).

I guess it's debatable if that's good or not ... but it seems to be "safe".
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Postby Donnchadh » Fri Feb 11, 2011 8:45 am

scorpion wrote:I have read lots of great results and some terrible results. Go get the veins in your neck manipulated three different times and then come back and tell me about "the simple procedure".


Actually, compared to other unrelated general surgeries I had, a venogram is indeed very simple. No general anesthesia, no post-op lengthly recovery times, no pain pills, etc.

And yes, all these three different venograms involved my "neck veins"
and I am much better for it.

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Postby eric593 » Fri Feb 11, 2011 9:01 am

Lyon wrote:Not only have I forgotten who it was but it's not my place to name names but a few weeks ago one thisisms member said he/she has had it done 5 times. It sticks in mind because another member was giving him/her hell for doing it so many times in such a short time period.



It was vivalvie who had the multiple procedures that she discussed In lucky125's thread and I was the person that gave her so-called "hell" for having so many procedures in less than a year.

Dialysis patients have scar tissue that narrows veins which are dilated to open up veins for necessary repeat dialysis treatments or else the patients will die without it, it's a whole different kind of stenosis that's being treated and I'm not sure we can extrapolate from that, most especially with the more aggressive treatment techniques that are being employed that increase risks and have never been done before. We have NO data on safety or efficacy nor were they part of Zamboni's treatment approach. And now we have the most recent study of the alarming cancer risks from the radiation from repeat chest imaging.

There's a lot of unknowns and a fair number of risks with repeat ditatations, especially over the short term when "best practices" have not even been established yet and treatment techniques become more aggressive.
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Postby Lyon » Fri Feb 11, 2011 10:00 am

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Postby Cece » Fri Feb 11, 2011 10:52 am

Her situation was different, it was one procedure initially and then three to correct the complications of each procedure. Then a final one, voluntary, to regain lost improvements if possible.

Dr. Sclafani's methods are not as aggresive as they were a month ago from what he has said in his thread lately. He too measures the vein using IVUS and uses that to guide how large he dilates, just as was mentioned above about a conservative doctor.

I look forward to when it's all figured it out. I dont think there is an answer to the OP 's question. For hyperplastic veins a succession of procedures a few weeks apart may be part of the protocol some day, as it is for AV fistula maturation, as drsclafni has talked about. That succession of procedures is a large number in a short time. Donnchadh's were many months apart, that may give the veins more time to recover than if it's closer. Each prcedure would do intimal injury so risk of hyperplasia might increase.

We hear of people who have improvements after the first procedure who lose them and then do not get them back, even when to all appearances the veins are flowing. It's kinda a mystery. I think it's more common to improve with each procedure but unknown.

javabean, let us know what the IR who s looking at your scans, if he thinks there is still stenosis, if his advice is to go for a third? I think it is an important question, now that people are getting into multiple venoplasties. CCSVI keeps changing! It is fascinating. :)
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