restenosis question

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

restenosis question

Postby anamishguy » Sun Aug 29, 2010 10:05 am

I had both jugulars ballooned on August 4 2010. I felt great for about 1 week and the slowly slipped back to pre-procedure conditions. I contacted the doctor that did the procedure and he said it was impossible that I re-stenosed already. Does anyone have any information on why he says I could not have re-stenosed so soon and is it true that 3 treatments is the maximum number you will need to stay open permanately? Thanks for any information. The doctor will not re-check until 3 months.
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Re: restenosis question

Postby dania » Sun Aug 29, 2010 10:26 am

anamishguy wrote:I had both jugulars ballooned on August 4 2010. I felt great for about 1 week and the slowly slipped back to pre-procedure conditions. I contacted the doctor that did the procedure and he said it was impossible that I re-stenosed already. Does anyone have any information on why he says I could not have re-stenosed so soon and is it true that 3 treatments is the maximum number you will need to stay open permanately? Thanks for any information. The doctor will not re-check until 3 months.

I had the procedure June 23. Had improvements which disappeared 1 week later. They found I had restenosed and the stenosis was now worses than what they had originally discovered. One man had restenosed in 1 vein 24 hours after the procedure. This was discovered by the doctors which performed the doppler the morning after the procedure.
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Postby Farmer » Sun Aug 29, 2010 10:58 am

I had the procedure 9 July both JV 80% closed.Nice improvements for 11 days. My old symptoms came back and a little bit worse. I am going back 15 Sep to get checked and possible treatment, this time I will ask for stents.
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Re: re-stenosis question

Postby Donnchadh » Sun Aug 29, 2010 12:22 pm

anamishguy wrote:I had both jugulars ballooned on August 4 2010. I felt great for about 1 week and the slowly slipped back to pre-procedure conditions. I contacted the doctor that did the procedure and he said it was impossible that I re-stenosed already. Does anyone have any information on why he says I could not have re-stenosed so soon and is it true that 3 treatments is the maximum number you will need to stay open permanately? Thanks for any information. The doctor will not re-check until 3 months.


Veins can re-stenosis at any time; there have been reports of veins collapsing right after ballooning on the operating table. Other patients have maintained open veins for over 18 months from their initial procedure. I have never read an explanation why veins re-stenosis or why they do at certain times.

For your doctor to said that it is impossible for veins to re-stenosis so quickly is, quite frankly, showing their ignorance of CCSVI dynamics.

At this point, I don't think that anyone can say with certitude that 1, 2, 3 or more treatments are needed to finally keep veins open. It may be necessary for a CCSVI patient to have the procedure repeated on a yearly basis---so much isn't known yet.

On the positive side you have experienced first hand the improvements possible with opened veins and know exactly what was causing your "MS" symptoms.

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Re: restenosis question

Postby PCakes » Sun Aug 29, 2010 12:27 pm

anamishguy wrote:I had both jugulars ballooned on August 4 2010. I felt great for about 1 week and the slowly slipped back to pre-procedure conditions. I contacted the doctor that did the procedure and he said it was impossible that I re-stenosed already. Does anyone have any information on why he says I could not have re-stenosed so soon and is it true that 3 treatments is the maximum number you will need to stay open permanately? Thanks for any information. The doctor will not re-check until 3 months.


hmm.. There are many accounts of fairly quick restenosis.. for many reasons like in the crowd choosing to have a go without stenting despite recommendations otherwise. (I am not promoting stents here) or those with stents presenting coagulation?
Do you have an opportunity to consult with a different I.R.? Can you share the name of your Doctor? This would be only if that doctor/clinic were openly and actively advertising treatment.
On the flip side..there have been reports of symptoms slipping back quickly but then resolving after a few more weeks.
Have you read the "Sticky: Post if CCSVI treatment did NOT work for you" Here is the link.. http://www.thisisms.com/ftopict-12342.html
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Postby Cece » Sun Aug 29, 2010 2:37 pm

There is currently no way anyone can say it'll take 3 treatments maximum. That is just not known. Some cases may not ever be able to stay open after ballooning (and would need a stent or full vascular surgery option).

I know Dr. Siskin does not like to see anyone back before three months, because sometimes people expect immediate improvements and do not get them and then suspect restenosis, but when he has checked they are not restenosed. So he gives it three months to see if they get the gradual improvement arc. This is what he said at the symposium last month.

But as everyone else has said, no, your doctor is not correct. It is very possible to restenose (either through elastic recoil, which is the vein re-taking its shape, or through clotting-off of the vein) at any point in time, even within a week of the procedure.

I guess your options would be to wait the three months or see if you can find follow-up care from someone else. These aren't great options.
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