TAVR

[CROSSFIRE]

Why don't they do a TAVR on everyone that needs a AVR???

 

[Paleowoman]

From what I have read and understand, first of all, TAVR has a higher mortality rate than standard AVR, higher risk of stroke, but that might be because it is new, and, as well, the people having them too ill to have standard AVR, and secondly, there are no long term results of TAVR becasue they're only doing them on people in whom it's too risky to do standard AVR so they're generally very elderly. There might be other reasons. We have to wait a bit… while the technology advances.

 

[Agian]

They do, in Germany. 50% of all AVRs are TAVI. My question is why don't they use it to buy time, prior to OHS. If it lasts a few years, before it wears out that's good news. You may be able to delay OHS by ten years, by which time something better may have come along. Early days I guess.

 

[sylviayasgur]

do they do TAVR on valves other than the AV? mitral?

 

[dornole]

Yes they have done MV replacement in this way, but much further behind from AV. I think the first one was tried in Denmark in 2012. First one in US was done earlier this year in Minneapolis. My cardiologist was on that team. Super high risk procedure only done on people who have a couple weeks to live otherwise and can't tolerate surgery. Mitral valve is far more complex than aortic in its structure.

I did have a "delaying" percutaneous procedure myself, a balloon that broke the stenosis on my MV and has gotten me by for 13 years now without symptoms. But that's a mainstream procedure without a lot to lose beside having to go right to OHS. Actually putting in a valve and having it be the right size based only on imaging, and having it stay in place without sutures with all the pressure that is on it is another ball of wax. The risk of stroke is also much higher than with standard AVR and they can damage your vascular system as well. It's a scary thing to say cracking open your chest is safer, but in a nutshell, they do AVR because for now they think it is safer and more effective.

 

[willieswa]

I have severe aortic stenosis (valve .8cm). I am 66 and very fit, active, and asymptomatic. My cardiologist suggests standard AVR and I prefer a tissue valve. But I have been hearing of low-risk stenosis patients like me getting TAVR. (e.g. read Don's story at http://www.ohsu.edu/xd/health/services/heart-vascular/getting-treatment/complex-heart-valve/ ). A visit to a cardiac surgeon resulting in him denying this possibility, saying government guideline prohibit all but high risk aortic stenosis patients but getting TAVR. Anecdotal evidence implies he is wrong and that advocacy and doctors' discretion are key factors. I am trying to find out exactly what the current guidelines are for selecting TAVR patients. meanwhile I'm searching for a clinic in the Pacific Northwest who will perform TAVR on low risk patients. If there are clear government regulations against it, I'll schedule a standard AVR.

 

[pellicle]

Hi

... But I have been hearing of low-risk stenosis patients like me getting TAVR. (e.g. read Don's story at http://www.ohsu.edu/xd/health/servic...x-heart-valve/ ).

wow that looks really promising

That link wasn't quite it, I found this one in side that: http://www.ohsu.edu/xd/health/servic...osis-story.cfm

As to why I suspect that its a few factors:
* caution (I'd be cautious of bleeding edge tech and promises of companys who stand to benefit)
* turf (surgeons don't like their turf being taken away by catheter guys)

time will tell what happens.

For old timers like me such things are of course unavailable (and I mean old timers in terms of surgical history not my outright age).

Keep us posted on what you do / what happens

best wishes

 

[Paleowoman]

Welcome to the forum Willeswa ! I have read about TAVR and I understand they still won't do it except for high risk patients who are too ill to undergo surgery. I was 60, asymptomatic and very fit prior to my AVR. I went for a tissue valve. I read a lot about TAVR and, if it had been offered to me, which it wasn't of course, I personally wouldn't take it as TAVR is currently for two reasons which you might consider: 1) there are no long term follow ups on it in individuals who've had it, the people getting it are frail, they are not fit and active, none of them have lived for more than a few years more, so you don't know if the TAVR will stand up to you having a fit and active life for many more years (if you're 66 you may want a further 20, or more, years of life !!); and 2) the incidence of mortality from stroke appears very high, I think this is from bits of calcification from the stenotic valve breaking off, that makes sense since they can't remove the stenotic valve so have to rely on the stent part of the TAVR keeping the calcification in place so bits don't break off. Perhaps they have overcome the stroke problem now ? But they still have no long term studies with TAVR. With my tissue valve I expect to be able to live a long and active life - I will need a redo at some point, perhaps in my mid 70's or, if I'm lucky, early 80's, and by then surgery will be even more safe, and maybe TAVR will then be a good option, ie 15 to 20 years from now.

I have severe aortic stenosis (valve .8cm). I am 66 and very fit, active, and asymptomatic. My cardiologist suggests standard AVR and I prefer a tissue valve. But I have been hearing of low-risk stenosis patients like me getting TAVR. (e.g. read Don's story at http://www.ohsu.edu/xd/health/servic...x-heart-valve/ ). A visit to a cardiac surgeon resulting in him denying this possibility, saying government guideline prohibit all but high risk aortic stenosis patients but getting TAVR. Anecdotal evidence implies he is wrong and that advocacy and doctors' discretion are key factors. I am trying to find out exactly what the current guidelines are for selecting TAVR patients. meanwhile I'm searching for a clinic in the Pacific Northwest who will perform TAVR on low risk patients. If there are clear government regulations against it, I'll schedule a standard AVR.

 

[willieswa]

A few updates: OHSU took down their story from the lower-risk TAVR recipient because they felt it was confusing. The head of their TAVR clinic told me that they have been giving TAVR to moderate risk patients but with my STS risk level at 1%, I was too low risk. Currently Medicare guidelines are only for high-risk but also allow lower risk as part of clinical studies. NOTION Nordic studies of TAVR and SAVR recipients of comparable age and health ranges imply that the risk level is about the same. The OHSU TAVR director says that the US will be slow to approve TAVR for everyone. We were the 34th country to approve TAVR. He thinks availability for all risk-levels is 2 years away. There are pros and cons of both. I've found another university hospital clinic that is accepting low risk TAVR patients. If I qualify, I'll have the TAVR done there. I will expect to have the TAVR sapien valve replaced in 10 years or so again by TAVR process. Yes, Anne, having the valve sewn in and calcified bits removed by AVR is IMHO the greatest advantage of AVR and the reason I won't be disappointed if I go that route.

 

[willieswa]

Latest news. Conversations with several TAVR experts confirms that in the US the FDA is only permitting TAVR to less than high-risk stenosis patients if they are part of a clinical study. UWA and OHSU both have such studies through which some moderate risk patients are receiving TAVR. But I am too low risk to qualify. Two cardio surgeons must report that I am high enough risk to receive a TAVR. With my STS at .9, none will do so. Consequently, I'll have a mini sternotomy done on August 31. One surgeon told me that there is little risk of stroke now via calcium bits with the latest TAVR process. I questioned whether or not having a TAVR would make having a future valve-in-valve TAVR more difficult than having a (tissue) AVR now and later having it replaced through valve-in-valve TAVR. He replied that he believes that future valve in--valve TAVRs will do fine for replacing an original TAVR done with today's valve model. He believes that in the future most aortic stenosis valve replacement will be done by TAVR, but the FDA guidelines are holding it up. For a low risk patient like me, to get a TAVR, I would have to go to Europe and pay for it myself.

 

[willieswa]

Another update. Tuesday I consulted with a UWA Heart Center TAVR specialist. He confirmed that: with my STS at .9, I am well below the lowest STS that can qualify for TAVR under current FDA guidelines which include only moderate risk stenosis patients (ie STS of 4%-8%) under research clinics' studies. He is optimistic that in the next 1-2 years, new research clinics will accept low risk patients for TAVR. He suggested that because of my age (66), low STS, and good health, I might consider waiting for these new studies and getting a TAVR rather than getting a AVR immediately. He believes that TAVR presents no greater risk than AVR and than TAVR in TAVR replacements down the road will not be problematic. I've postponed my sternotomy previously scheduled for August 31. With asymptomatic severe aortic stenosis, I'll be monitored by my cardiologist every three months and continue with daily walks of 6 miles, yoga, and workouts. I'll check in with the UW TAVR in 5 months to see if there's any progress in clinics that may accept me. If the delay seems too long, I'll go for the AVR during our rainy winter when its less painful to be home or hospital bound.