Would you be a guniea pig?

[Herburban1]

Mass. General is doing a study using a clip (up to 2) to clip the mitral valve to keep it from flapping. It is based on a stitch made famous by an Italian surgeon (his name escapes me, as does most info). The study is no guarantee you will get it, you could end up with OHS anyway..It is done by angiocath. IF it worked it would be great but if not..I"m not much of a gambler. I said no but I keep thinking about it...

 

[geebee]

If flapping is the only issue and there is no stenosis causing symptoms, what would it hurt? I would much rather have a non-surgical procedure (even if invasive) if it would help things and push out surgery. Not that an angio is totally without risks but a lot less than OHS.

 

[Nupur]

Evalve

Evalve

If I am not mistaken, you are talking about the Evalve Clinical trial. Details at the link below

http://www.mitralregurgitation.org/Pages/EVEREST.html

The method is modeled after the "Alfieri stitch" after Otto Alfieri, who basically tied the two leaflets of the mitral valve in the middle, making kind of a bow tie shape to reduce regurgitation. They do the same thing using a clip (mitraclip) inserted through your femoral vein.

I have been reading about it a little. My first cardio told me that it will take a while (many years) to prefect the method and at this point most patients going for this method are people for whom OHS is risky. He thought even when I have surgery in a few years, he would recommend a regular procedure. Also not all valve prolapses are suitable for the procedure. One thing I wasn't clear about is if the clip fails how would they retrieve it. Also, I think someone else mentioned this in a post : if the clip fails, then your heart will be subjected to severe regurgitation all of a sudden, and there is no data (or not sufficient data) about the effect of an acute regurgitation like that.

It does sound promising in future, but I don't know if I would feel courageous to be a guinea pig. Please educate yourself very well if you are thinking about it.

All the best!
Nupur

 

[Adrienne]

Also, I think someone else mentioned this in a post : if the clip fails, then your heart will be subjected to severe regurgitation all of a sudden, and there is no data (or not sufficient data) about the effect of an acute regurgitation like that.

I'm the one that mentioned that fear. A cousin of mine in NY who is a doctor and had me come down and have a free echo so I could get the opinion of the cardiologist that works with him (this was when I was freaking out getting a million opinions), told me that Dr. Oz was doing the clip thing and that even though I live in Canada, I could probably get it for free since it is experimental. I didn't do it for the reason mentioned. As it turns out, it's a good thing, because I also had a Maze and had a PFO patched up.

 

[Herburban1]

Wow , interesting video. Yes that's it..I'm not really thinking about it seeing that I have my date in place. I was just wondering what other people thought about it...

 

[Jkm7]

Hmmm....

No. I don't think I would have agreed to participate in that study but I was never asked so can't say for absolutely sure. I probably was not a good candidate.

 

[Shawneegirl]

I am in the waiting room too. I also would be thinking about it. I would need alot more info on it but might consider it.
Bobbie

 

[JAJ99]

I looked into this and discussed it with my cardio. I don't think the data is sufficient, therefore I didn't pursue. Another worry I had was if the clip were to fail would the valve be too damaged to be repaired. It would probably be good for someone who wouldn't do well with OHS.

Best of luck with your upcoming surgery. The wait is the worst part!

 

[lance]

No other alternatives

No other alternatives

If there are no other alternatives to the condition then there isn't much choice so I might consider being a guinea pig.

Speaking as the 1 patient in 1,000 that experienced injury during heart catheterization I hope I never need to have another.

 

[MikeHeim]

I personally would do it as well. I work for a medical device manufacturer and am very familiar with the enormous testing that must take place prior to getting approval for a clinical trial, so the risks should be relatively low. (Please don't e-mail me examples of devices that have failed during clinicals - I know it happens occasionally, which is extremely unfortunate.) The upside of postponing OHS or even avoiding it completely would be worth the risks for me.

 

[Sud1964]

All,
Just curious to know, if there Are any updates to this procedure, and sounds like a relatively easy procedure to go thru. Pl. let me know.

Regards,
Sud
( Diagnosed with Severe mvp - Apr' 09 - waiting for a follow up echo )

 

[hall]

For me, with the risk involved if the clip fails, I do not think I would do it.

 

[ponytaila1a]

I think about it alot.....it seems I can't get my procedure completed. Now my husband is sick again and probably will give it to me just about the time I get a new surgery date AND my brother lives in MA

 

[Tbone]

I have had two experimental surgeries in my life. When I was a baby my parents & cardologist had to sign release forms to The Cleveland Clinic. These forms stated that this was "in their opinion" was not reccomended, and that they were just loaning the operating room out. It kept them from being liable for anything that could have gone wrong.

In 1977 I again had a surgery that was the first of it's kind. I was using a valve that had been on the market, but never used in that position before. This is taking into consideration how my heart was plumbed the first time.

You never know, but if there is something that is already proven I would go with that.