Where are the Stentmakers?

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

Where are the Stentmakers?

Postby hoodyup » Fri Jul 23, 2010 8:34 am

I heard a while back that Dake was working with a stent company to design a stent specifically for the jugular veins. It was to be available possibly 2011 (from what I recall). Is anyone aware of progress being made on this front. Until there is an "on-label" stent for use in jugulars, IR's will continue to be reluctant to consider risking their use in CCSVI sufferers. This will lead to many repeat angio's and relapses. Just curious if anyone has any news on this front.
Thanks, Andrew
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Postby Ali888 » Fri Jul 23, 2010 9:50 am

I had the procedure done on July 9th in Alexandria, Egypt. Dr. Tariq said stents for veins are are only a few months away from the market. They are cone-shaped. That will be a real relief for all of us!
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Postby hoodyup » Fri Jul 23, 2010 10:21 am

That is good news, Ali888. My wife will be going in for her second procedure in a couple of weeks. Her first angio had good results, which unfortunately lasted only a week and then she relapsed and continued to progress. The IR will not consider stents this next time around as he is concerned about migration (he is aware of the Stanford event). Due to the extreme difficulty in transporting my bedridden wife, she has stated that until jugular stents are available this will be her last attempt at angio only. I hope we can hang on. If anyone knows which stentmaker is closest to delivering the goods, it would be good to be able to be ahead of the game and be able to inform the IR of what he should already be aware of.
Andrew
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Postby blossom » Fri Jul 23, 2010 7:24 pm

ali888, did the dr. in egypt happen to say if the new stents will be availble in the usa at that time also?
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Postby Cece » Fri Jul 23, 2010 8:11 pm

A venous stent would need FDA approval as a new medical device. So that would take some time, wouldn't it? It is still great news.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Donnchadh » Fri Jul 23, 2010 8:39 pm

This doesn't make sense to me. I was told stents are already being used for varicose veins and to help dialysis patients.

Why would veins in the other parts of the body require a totally different design? I also think that Dr. Simka uses stents to maintain a 12 mm inner vein diameter. The IR I talked to was rather adamant about stents not migrating if properly selected.

I think this whole issue is way overblown; and based on one early unfortunate incident.

If a new design for stents was developed, then I am sure that it would require testing and trials.

More time wasted.

Donnchadh
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Got MS?.....Get Liberated!
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Postby Ali888 » Fri Jul 23, 2010 9:04 pm

Dr. Tariq just said the stents would be on the market, he did not clarify whether they would be available in Canada or the States. He said he did not want to use stents until there were some available specifically designed for veins. By the way, he uses a larger size balloon than Zamboni did and the restenosis rate goes down from 50 % to 20 %. He also balloons as he goes up the azygous vein so that he can see problems that would not show up in a regular venogram.
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Postby Cece » Fri Jul 23, 2010 10:15 pm

Do you mean he balloons even when he hasn't found a stenosis, because the ballooning holds the vein more open or something and that helps him find it? (Heck, with the risk of missed stenosis, it would at least help with that!) But wouldn't the more area that is ballooned, there would be more clotting risk at it recovers from the ballooning injury? It is interesting to scrutinize all our doctors' different methods. Right down to the stent/no stent dilemma. Right now there is no best way: who knows? But this is an interesting idea with the azygous.

I hope, Ali888, that you are feeling well after your procedure!

Donnchadh, I think it is the torsion requirements of the neck compared to other areas of the body. Most places where a stent is used don't subject it to much twisting or movement. Also the relative youth of MSers so that the stent has to hold up for the many decades ahead of us. And the importance of these veins. But I am already on record as being cautious about stents. :)
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Postby silverbirch » Sat Jul 24, 2010 2:38 am

Ali888

Have you written about your procedure as I hope to go Alexandra do you have any tips

Do you need medical insurance should anything happen following procedure

Have you improved I know it was a few weeks ago ?

Have you arranged aftercare /screening ?

I myself am RR DX 14 months ago with a + on ccsvi right ijv with me not much to improve cog fog, eyesight deterioration !! a few minor symptoms what I hope to gain , stop MS in its progression .

Silverbirch
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Postby Ali888 » Sat Jul 24, 2010 8:15 am

My husband and I were both treated at the same time. The upper third of his jugular was narrowed. No signs of reflux. His main problem was with his azygous vein. His stenosis there would have shown on the venogram. I had signifcant stenosis and reflux in both righ & left jugulars. I had problems with my azygous that would not have shown in the venogram. I was quite foggy when he explained it to me, but he was talking about "cobwebs" branching from the azygous.

Both of us have had improvement. Joe can open his left hand and stretch all of his fingers for the first time in a year. He can lift and hold his left leg from both standing and sitting positions. I no longer have blue feet and actually have feeling in my feet for the first time in a decade. I can heel-toe walk for 15 steps in a row (prior to the procedure, I could not do one). I went to the grocery store without my elbow crutch the other day. Things are really looking up and we are waiting for more improvement!

Silverbirch, I will send you a pm about travelling to Alexandria for the procedure. I do have some tips to offer that I wish I had known before going!
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Postby Cece » Sat Jul 24, 2010 12:06 pm

Ali888 wrote:Both of us have had improvement. Joe can open his left hand and stretch all of his fingers for the first time in a year. He can lift and hold his left leg from both standing and sitting positions. I no longer have blue feet and actually have feeling in my feet for the first time in a decade. I can heel-toe walk for 15 steps in a row (prior to the procedure, I could not do one). I went to the grocery store without my elbow crutch the other day. Things are really looking up and we are waiting for more improvement!

I still tear up when I read this sort of thing. Very happy for you and your husband. May the improvements keep coming.
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Postby BadCopy » Sat Jul 24, 2010 1:32 pm

JJJJJJJJJJJJ
Last edited by BadCopy on Sun Jul 25, 2010 11:11 am, edited 1 time in total.
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Stentmakers

Postby cmozena » Sat Jul 24, 2010 1:53 pm

A company named Cordis is a subsidiary of Johnson & Johnson. I know personally of one person who had the Cordis S.M.A.R.T stent put in (Poland Simka) and I saw another post of a patient also using this stent. I forwarded this info to a friend who works in sales for Cordis and he was going to forward info to their Clinical Research & Product Development teams.
Now they may already be working on this but pleas from the MS masses couldn't hurt.
HAVE YOUR VOICE HEARD!
email your demand to:
cordis_endo@crdus.jnj.com (endovascular)
ra-crdus-cypher_USA@crdus.jnj.com (stents)

Perhaps find the email of an Interventional Radiologist and/or Vascular Surgeon in your area and copy them on the email.

Let's face it. Both of these people could make money off of us. ..since we know money talks and that's what keeps the drugs coming down the pipeline!
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