This Is MS Multiple Sclerosis Community: Knowledge & Support

I've often read on this forum and others discussing CCSVI that jugular stents are used quite often and very successfully on patients suffering from kidney disease who need to undergo repeated dialysis.

During Dr. Sclafani's recent symposium, a physician in the audience pointed out that the failure rate of such stents after one year is about 50%.

I decided to do a little digging, and came up with this rather comprehensive paper, which reviews many different studies regarding the use of stents in dialysis patients.

Although there are different results among the different studies, many of them do point to a rather high failure rate when stents are used in these cases. They are more successful than angioplasty or venoplasty alone, but are far from trouble-free...

Not sure that a direct comparison can be made between stents placed in dialysis patients and those placed in CCSVI patients, as I believe the location of placement is somewhat different, and I'm sure that dialysis puts increased stress on the veins. Still, I think it's the best evidence we have to go on...

Definitely makes for an interesting read, especially if you are considering stents...

http://cjasn.asnjournals.org/cgi/content/full/4/5/996

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Marc
www.wheelchairkamikaze.com

I'm not aware of the mortality rate of persons with kidney disease, but if the prognosis is poor, maybe that is why the use of stents is accepted (risk/reward) even though they have a high rate of failure at one year.

I know there have been a few people back to Stanford for their one-year checkup and so far no reports of stent failure, thank goodness. Simka's used a good number of stents and no one has reported a failure but I'm not sure any of his are a year old yet. I'm not downplaying Marc's post as it is definitely info we all need, I'm just trying to think if there's also evidence that stents for CCSVI will work better. I sure hope so, I've got three of the suckers.

I am # 2 in Poland. I had my procedure more than 9 months ago.
Dr. Simka will check me in October. I am not able to say if it is OK or not. My bloodflow is slow but so far no complications regarding the stent.
I feel very little pain on the left side of my neck (for only 3 days). However it might be the muscles, vein..., I do not know if it is the stent. It might go away in couple of days. The first patient had his procedure only 2 weeks earlier.
Erika

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

Marc,

Thank you for starting this very important discussion and finding this paper. I tried to read and understand it. Not easy!

I did not ask the doctor who performed my most recent angioplasty about stents because I was not prepared to use them at this time. He used stents on 2 out of the 4 patients he treated on the day I was seen. I would have liked to ask him about his confidence in the long term patency of the stents. For that matter I would like to ask ALL doctors using stents that same question.

What is their plan if a patient restenoses around the stent? Is there anything that can be done? I would highly recommend anyone contemplating this procedure with the possibility of stenting to insist on answers to these questions.

I feel fortunate that I have been able to find doctors to treat me in the US, and that my insurance has paid in full. It makes it easier to resist stenting hoping for a "permanent" fix.

I understand that it is a much more difficult decisions to make for people traveling far distances, and paying thousands of dollars for treatment.

I hope that I will have the luxury to hold off stenting until there is some long term data on them. Wishful thinking I know. The longest stented CCSVI patients are those treated by Dr. Dake. They are wonderful resources for information to us all, but they were not treated in a clinical trial. There is no requirement for Dake or any of his patients to report adverse results if there are any.

We are all guinea pigs at this point. I wouldn't trade the opportunities I've had, but I realize that we have no idea where we will be in 1, 2, or 40 years from now.

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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