Take Part in Percutaneous Valve Placement Trial.....

[Jkm7]

If you were given the opportunity to have your valve replaced percutaneously during these trials, would you agree to it or would you opt for traditional surgery?

Would your answer be different if it was to be your second or third OHS vs. a first?
Would age be a factor for you?

All of this, of course, is hypothetical in U.S. but wondered your feelings on the subject.

For me, no question I'd be willing to try the percutaneous route if given the choice.
If price was not outrageous, I would be willing to travel to another country to have the procedure.

 

[kfay]

I'd be willing to take place in the trials. I was a guinea pig in my first heart surgery and it wouldn't bother me to be one again.

Having said that, I have no doubt that at some point, this will be how I will get my valve replaced. I have heard it every time I have seen my Dr's at the Mayo and I'm sorry, but I have a tendency to trust that they have a little more knowledge about what is going on than most of us do. I don't believe it will be my next time (which will be my 3rd surgery), and someone please correct me if I'm wrong, but my understanding is that you can only have it done this way one time. So, logically, for me, that would be my 4th, which would make the most sense anyway because I would be older and probably more frail anyway.

I'm curious if those of us who grew up with congenital heart issues are more willing to try these things than those who didn't.

 

[Lynlw]

I can answer for Justin because we looked into having the Melody valve, IF he needed his pulm valve replaced last surgery..in 07, He would have had it as part of the trial at Boston childrens. But his valve was fine he needed a section of conduit replaced so wasn't a candidate after all the testing was done. We personaly looked at the percutaneous valve trials, like we did when he was 12 and had 2 stents placed in his conduit, instead of needing that section replaced by surgery like it was when he was 10. (When a section of his conduit was blocked when he was 10, we were told IF we were in Switzerland they could have stented it, but it wasn't approved yet here so he needed surgery. 2 years later he was able to have stents. We figured it was worth trying, since he needed a cath anyway and IF it worked great, he could avoid or put off surgery. IF it didn't work and they needed to operate, he wouldn't be worse off than if he just went ahead and had the surgery.

 

[Lynlw]

I'd be willing to take place in the trials. I was a guinea pig in my first heart surgery and it wouldn't bother me to be one again.

Having said that, I have no doubt that at some point, this will be how I will get my valve replaced. I have heard it every time I have seen my Dr's at the Mayo and I'm sorry, but I have a tendency to trust that they have a little more knowledge about what is going on than most of us do. I don't believe it will be my next time (which will be my 3rd surgery), and someone please correct me if I'm wrong, but my understanding is that you can only have it done this way one time. So, logically, for me, that would be my 4th, which would make the most sense anyway because I would be older and probably more frail anyway.

I'm curious if those of us who grew up with congenital heart issues are more willing to try these things than those who didn't.

I know you can have a percutaneous valve replaced at least once with another percutaneous valve if that is what you are asking. They've allready done quite a few pulm valves 2 times already.

 

[kfay]

Lyn, But doesn't each time it gets smaller and smaller? If so, that might influence my decision how many times I'd be willing to do it.

 

[Jkm7]

kfay,

By the time you would need a second percutaneous, it is highly possible the procedure could have been refined enough to correct those limitations.

I totally agree with you that when the surgeons at Mass General expressed to me their faith percutaneous valve replacement would become common, I believed them. Surgeons at these fine hospitals certainly are more informed than we and they are well know for saying only that which they believe to be true. They aren't 'loose with their mouth' about such subjects. IMO We've heard it from Surgeons at Texas Heart, Alabama, Cleveland, Mayo, Brigham and Womens, Mass General and that fine Canadian Heart Center..... they can't all be wrong.

 

[Michelle D]

I definetly would but they tried to do a pre-cutaneous annuloplasty ring and my femural artery was too small. So I've got the incesion and numb thigh but they couldn't use it. So you even though we have high hopes for this procedure but you'd have to have large enough arteries.

 

[Lynlw]

Lyn, But doesn't each time it gets smaller and smaller? If so, that might influence my decision how many times I'd be willing to do it.

Since it is built on a stent , my understanding is you can make the older stent a little wider with the newer stent, like they do with stents now. The leaflets get squished open so they take up a small amount of space, but are pretty thin,then the fact they don't have a sewing ring like valves you sew in, already starts them out a little larger than a valve they use now.

 

[LonMel]

In discussions with my surgeon, I asked that my valve/aorta replacement be TAVI ready. I hope when it is time for my "re-op" this procedure will be available.
See link for rationing discussion. http://www.smartplanet.com/technolo...rts-healed-for-less-raises-system-costs/1693/

 

[ShezaGirlie]

Yes, I would try to be first in line for a percutaneous aortic valve but alas...it's not possible to replace a mechanical valve using that avenue from what I understand. Maybe some day it will..

 

[Bina]

I know for a fact that my surgeon does them, so I would be second in line right behind Janie.

 

[Lynlw]

I definetly would but they tried to do a pre-cutaneous annuloplasty ring and my femural artery was too small. So I've got the incesion and numb thigh but they couldn't use it. So you even though we have high hopes for this procedure but you'd have to have large enough arteries.

One good thing is they are working on making the sheaths much smaller. Also I know for some patients who can't have transfemoral used, they go in transapical, thru a small hole in the chest. heres a little clip http://www.edwards.com/products/transcathetervalves/transapicalanimationclip.htm

I didn't realize they could do the anuplasty rings percutaneously.

 

[Johan]

I have had 5 catherizations already (stent, angioplasty and tests) and would certainly lie down for another one to have a valve replaced.

Are the researchers working on placing a Sapiens valve within a previously implanted tissue valve?

My tissue valve is 21mm, possibly a bit tight for another one inside it. But then I will be older and could possibly just manage on a reduced blood supply!

 

[Lynlw]

I have had 5 catherizations already (stent, angioplasty and tests) and would certainly lie down for another one to have a valve replaced.

Are the researchers working on placing a Sapiens valve within a previously implanted tissue valve?

My tissue valve is 21mm, possibly a bit tight for another one inside it. But then I will be older and could possibly just manage on a reduced blood supply!

Yes both the Sapien (edwards) and Corevalve (now medtronics) Aortic valves and the Melody pulm valve are able to replace tissue valves (so far it looks like a very long time if ever, they could replace a mechanical valve, percutaneously) I've heard a couple discussions that it actually is easier to implant them in tissue valves, since they are an exact size and circle, which isn't always the case with native valves.
I don't know what sizes are available right now,for the different valves, but they are working on other sizes.

 

[kfay]

Just curious/wondering if anyone knows if past repeated cath procedures would cause an issue with being able to have a valve placed this way. I know a lot of us congenital heart patients have had multiple caths and I know there is scar tissue involved with these. Also, on "older" (HA!) patients like me, they didn't just punch a hole in us like they do now, but rather cut a good 3" incision.

Kim

 

[NealR]

OK,

I get it,,,aortic is on the radar. Has anyone heard about the Mitral? I wonder if they could do both in one procedure?

I think my aortic 25mm, and the mitral is 31mm. My surgeon would'nt talk much on this process except to say that he didn't see how it could be done.

My cardiologist says both these sizes are large and one of the reasons was the possibility of replacing them with this new type of surgery, the surgeon just didn't want to go out on a limb and tell me just yet.

 

[Lynlw]

Just curious/wondering if anyone knows if past repeated cath procedures would cause an issue with being able to have a valve placed this way. I know a lot of us congenital heart patients have had multiple caths and I know there is scar tissue involved with these. Also, on "older" (HA!) patients like me, they didn't just punch a hole in us like they do now, but rather cut a good 3" incision.

Kim

Kim I asked about this especially right after Justin had his femerals cut for the heart/lung machine. I was told right then (3 years ago) ..not even in the future. IF for some reason they couldn't use one side, they could either use the other or subclavian. So far for Justin at least , even with ALL the caths he has had (at least 20 I lost count)he still can be cathed everywhere. but I think it would also make a difference where the scar/blockage is. if it is low, they probably could go in above it. (MY thought not what I was told)

 

[Johan]

Yes both the Sapien (edwards) and Corevalve (now medtronics) Aortic valves and the Melody pulm valve are able to replace tissue valves (so far it looks like a very long time if ever, they could replace a mechanical valve, percutaneously) I've heard a couple discussions that it actually is easier to implant them in tissue valves, since they are an exact size and circle, which isn't always the case with native valves.
I don't know what sizes are available right now,for the different valves, but they are working on other sizes.

Thanks Lyn, very encouraging!