OHS v. TAVR

Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.

MRiordan29

Member
Joined
Apr 24, 2006
Messages
20
Location
NY, NY
Hi All,

This post is somewhat of a combination between valve selection, waiting room, and new advancements. I could write quite a bit here but I am going to try to give you the short version (I use that term loosely) for now.

I am 37 y/o and had my first OHS at 24 y/o to replace a bicuspid aortic valve which was first diagnosed as a child. I chose a tissue valve and had a Carpenter-Edwards Perimount 2800 implanted in June of 2006 at New York Presbyterian Weill-Cornell hospital in NYC. After an echo in April of this year, I learned that my tissue valve is severely stenotic and needs to be replaced. I went back to Weill-Cornell in May and met with a surgeon to discuss a re-op. I'm mostly asymptomatic but his recommendation was that I have it replaced before the end of the summer. My surgery is actually scheduled for Wednesday of this week, but I still have not made a valve selection and am also considering another option.

I have pretty much decided that I do not want to endure another OHS to get another tissue valve that will only last another 10 or 20 years, at which time I would be facing a third OHS. My initial inclination was to get a mechanical valve and hopefully be done with this. However, at the suggestion of my cardio I met with an Interventional Cardiologist that specializes in TAVR (aka TAVI). I was not expecting to be eligible for TAVR based on my age, low risk profile, and my knowledge of the general state of the technology. In fact, initially I was told that I am not eligible because the procedure has not been FDA approved for low-risk patients. Subsequently though, the doctor reached out to let me know that I could undergo TAVR as part of a registry within the current Carpenter-Edwards Sapien 3 Partner trial (I would not be part of the randomized trial) which is testing expansion of TAVR into low-risk patients. I was also told that I would need to submit to several tests (CAT scan, cardiac cath, etc.) to make sure that I am physically able to have TAVR. As mentioned above, I scheduled the traditional OHS but decided to proceed with the TAVR evaluation in the meantime since I would need most of the tests for the surgery regardless.

Subsequently, I met with the surgeon that oversees the TAVR program at Weill-Cornell. Basically they are presenting TAVR as having the same amount of risk as OHS but identified two main issues that they would be concerned about. First, that the valve doesn't end up in the correct position once inserted. The technology is such that they apparently are able to place the TAVR valves in the desired position almost every time, but it is not perfect and sometimes the valve ends up missing the desired landing site. Second, that the pressure gradient across the TAVR valve is too high once it is in place. This could happen because even though the TAVR valve has a very low profile, it would be inserted valve-in-valve into my current prosthetic valve which is 23 mm (so not small but also not large). The decreased opening could cause an increase in pressure across the new valve thus meaning I would have a stenotic TAVR valve right after it's put into place. Either of these problems would ultimately have to be corrected through OHS to take it all out and put in a new valve.

I had the cardiac cath, CAT scan, and ultrasound of my carotids. All of these came back normal and so I was expecting to get the approval for TAVR. However, in order to be part of the registry/trial, my tests had to be reviewed by a panel of doctors from around the country that are part of the trial. The panel asked for one additional test, a transesophageal echocardiogram (TEE) to make sure that there are no leaks around the ring of my current bio-prosthesis as that would make TAVR a bad idea. They don't have any specific reason to believe that I have such a leak but have asked for the test as a precaution. One logistical issue with this is that I can't have the TEE until 7/17, so I would have to delay my surgery in order to undergo the TEE and get a final answer as to my eligibility for TAVR.

Aside from the desire to avoid a second OHS, albeit temporarily, my main reason for even considering TAVR is to keep my options open going forward. Although there is no data to say how long the new generation of TAVR valves will last, especially in a young person, the thought is that they will last as long as the current traditional bio-prosthetic valves because the leaflets are made from the same tissue with the same treatments. Hypothetically, if this TAVR valve lasts me 10-15 years I would then be facing another choice. I could potentially have another valve-in-valve TAVR if there was enough space for that to happen, or a second OHS in which they would remove both valves and insert a new valve of my choice. My hope is that there would be an even better option available at that time, perhaps a second OHS but with a valve that will last the rest of my life and not require any anti-coagulation beyond an aspirin.

At the end of the day the TAVR comes with a lot of unknown and so I am not sure that I want to expose myself to that. I have read many of the relevant threads on this site as well as done some of my own research, and I just do not know how I feel about it. In terms of the OHS, it is relatively safe and a known entity. However, despite everything I have read on here and elsewhere I am still somewhat fearful of Coumadin, as irrational as that may sound. I have been looking into the On-X valve and am wondering if anyone has any input on that and the possibility of a reduction in the amount of anti-coagulation needed.

Anyhow, I would love to hear from anyone with thoughts, opinions, information, etc. I won't take offense if you think that I am crazy for even considering TAVR or for being in this position in the first place through my initial valve choice. I know that this is a respectful space and that no one here would say anything offensive, but time is short so I don't mind if you refrain from sugar-coating your thoughts. Thanks in advance for your help.
 
Hi Matt - if you are considering a tissue valve, rather than mechanical or TAVR (I thought TAVR were only for elderly patients as they don't last that long - the valves that is, not the patients) have you talked with your surgeon about the very new Edwards Inspiris Resilia tissue valve ? It has been designed with younger patients in mind as it is meant to last a lot longer than previous tissue valves. There's a fair amount of discussion on the forum about it, but of course your surgeon would be the best person to talk to.

Here's an article about it regarding younger patients: https://cardiovascularnews.com/firs...ces-inspiris-resilia-aortic-valve-take-place/

As an aside, a third surgery wouldn't be so good, though some people on here have had three or more. Also getting what would be a effectively a 'stenotic' valve with a TAVR in a 23mm valve would, like you say, lead to a third surgery at some point - though I wonder when, that is aside from the fact that they have so far been only given to elderly patients as far as I know. I had my bicuspid aortic valve replaced four years ago with a 19mm tissue valve which is too small for me so the effective orific area and high pressure gradients put me in the moderatle to high stenotic range already. No immediate surgery is planned though since the valve leaflets are working fine and redo is considered too high a risk at this stage. I suspect the valve will degenerate and become calcified sooner than it it were bigger.

You don't seem to have much time to deicde on what to go with.
 
Last edited:
I am slightly hesitant to comment, in so far as I realise I have made my choice (mechanical AVR at age 48, about 4 years ago) and I do wonder sometimes how much that biases my comments, in justifying to myself the choice. However, my choice was down to the key point you mention: not wanting to go through OHS again if I chose a tissue valve. I accept that there are promising developments with tissue valves, but it seems unlikely that they are yet at the point of lasting for the rest of our lives. A mechanical valve ticks, it is true. But even though I had banned mechanical clocks from my home because their ticking irritated me, I personally have not found it an issue at all. (I have a 29mm St Jude valve). Yes, I need to take warfarin every day for the rest of my life, but I have to take other medication too and this is simply not a problem for me. I am not an adrenaline junkie, so don't go rock climbing or do contact sports like rugby etc, so I consider the risk of a bleed to be reasonable, and the ease of home testing my blood thickness, keeping it within a sensible range, with a hand held meter, gives me great reassurance.

I realise from your profile that you play basketball and go surfing, so perhaps this is more of a concern in your case, but if your objective is to minimise the risk of redo surgery then a mechanical valve still seems the clear choice to me.
 
Matt - reading your post and your very well thought out analysis I would conclude that you should not opt for TAVR. I have a mechanical valve (23mm) and I would not like to have any additional pressure drop or restriction. I am now 60 years old and can still do 50 mile mountainbike rides with 9000 feet elevation gain.

Good luck with your decision.

Juli
 
Hi

I guess we have a lot in common, only difference being I'm now 54 and had my 3rd operation back in 2011 at 48.

so perhaps I understand your issues better than most.

MRiordan29;n883985 said:
This post is somewhat of a combination between valve selection, waiting room, and new advancements. I could write quite a bit here but I am going to try to give you the short version (I use that term loosely) for now.

if you ever feel like discussing those things I'm always receptive to conversations, Skype, WhatsApp, anythying where I don't have to type (cost like that's tedious)

I am 37 y/o and had my first OHS at 24 y/o to replace a bicuspid aortic valve which was first diagnosed as a child. I chose a tissue valve and had a Carpenter-Edwards Perimount 2800 implanted in June of 2006 at New York Presbyterian Weill-

understood ... I see you have not mentioned aneurysm yet ... that's something that's on the cards for us congenital bicuspid valvers. In my case it was a primary driver for my third OHS (although the valve was becoming incompetent again anyway).

I picked a mechanical on the advice of my surgeon who made clear that the levels of increased scar tissue would make a 4th surgery difficult (and in my view quite probably life eroding).

...I was also told that I would need to submit to several tests (CAT scan, cardiac cath, etc.) to make sure that I am physically able to have TAVR. As mentioned above, I scheduled the traditional OHS but decided to proceed with the TAVR evaluation in the meantime since I would need most of the tests for the surgery regardless.

I remain highly sceptical about the TAVR because of durability and risk of complications. Durability is of course undersold by the sellers of that option and you would get less time from that than another tissue valve (which you already have some ideas of now). As far as I know a valve in valve can only be done once and due to the reduced oriface diameter (of putting a new one inside the old one) lasts less time again.

At that point you're facing another OHS ... just take a moment to count that up.

I see you're across these points which is good:

Subsequently, I met with the surgeon that oversees the TAVR program at Weill-Cornell. Basically they are presenting TAVR as having the same amount of risk as OHS but identified two main issues that they would be concerned about. First, that the valve doesn't end up in the correct position once inserted. The technology is such that they apparently are able to place the TAVR valves in the desired position almost every time, but it is not perfect and sometimes the valve ends up missing the desired landing site. Second, that the pressure gradient across the TAVR valve is too high once it is in place. This could happen because even though the TAVR valve has a very low profile, it would be inserted valve-in-valve into my current prosthetic valve which is 23 mm (so not small but also not large). The decreased opening could cause an increase in pressure across the new valve thus meaning I would have a stenotic TAVR valve right after it's put into place. Either of these problems would ultimately have to be corrected through OHS to take it all out and put in a new valve.



My hope is that there would be an even better option available at that time,

do a google search here and see how many people have said that only to find it hasn't

what are you willing to place on that wager? And why?

Anyhow, I would love to hear from anyone with thoughts, opinions, information, etc. I won't take offense if you think that I am crazy for even considering TAVR or for being in this position in the first place through my initial valve choice. I know that this is a respectful space and that no one here would say anything offensive, but time is short so I don't mind if you refrain from sugar-coating your thoughts. Thanks in advance for your help.

well I'm never accused here of sugar coating, so if I may just type in bullet points please excuse that (I've done enough typing of emails already this morning ;-)

in no particular order of significance
  • what is your aversion to a mechanical, is it anticoagulation therapy? I would say that is much misunderstood, and without co-morbidities (like you can read about here) its a peach. The major issue with warfarin management is not doing it yourself. (see my blog on that)
  • what happens if due to life circumstances (and the pernicious US Medical insurance) you find yourself without a job, and need that other surgery?
  • explore carefully the aneurysm issues and your risks
  • I think its not wise at this stage to go for an experimental procedure when there are good options with decades of experience
  • when examining data about TAVRlook very carefully at factors like age of cohort, and consider are they active or "active for their age
  • aside from reoperation from Aneurysm a mechanical will give you the best chance at not needing another surgery, all other options (assuming you don't die first) will lead to reoperations.
40335848202_5cfbbe35b3_o.png


Best Wishes

ps: email me at my hotmail address if you wanted to skype or whatsapp (pellicle at hotmail of course)
 
I an Edwards tissue valve at age 61 in 2015. I was not crazy about being on warfarin and was also concerned about ticking. However, I think you’re too young to have TAVR and, to be blunt as you requested, my sense of your situation is that the doctors are nudging you in that direction for their own ends. That’s just the feeling I get from reading your post. I myself am in a clinical trial so it’s not that. If you are leaning toward tissue with the OHS perhaps the TAVR would be worth the risks. But if your goal is to avoid a third surgery, I recommend OHS and mechanical for peace of mind.

Either way, I wish you the best. Please keep us posted.

Hugs,
Michele
 
I had picked a tissue valve 6 years ago at the age of 39. I recovered quickly and was back at work doing home childcare within a week. And then I started to have symptoms of my valve failing and was put on a "urgent wait list" for surgery. Long story short I had edema then went to emerg. Finally had surgery after 5 months on a urgent wait list and my surgeon said " I was late to the game". Meaning I had an enlarged heart. and was in a coma for a few days after my surgery. So now I have a mechanical valve and healing very slowly. Now that I have been through 2 surgeries, I really wish I had picked a mechanical valve for my first surgery. No one can tell you which type to pick , but wanted to let you my experience. Beside the noise of the valve theres nothing else to be scared of. Good luck with your decision!
 
I am pretty risk averse so for me the proven track record of the mechanical valve would outweigh the unknowns of the TAVR procedure and not having to use warfarin. That being said, I do have problems with warfarin since if you are on it you can't take the good arthritis medications. At 55 I chose mechanical because I didn't want another heart surgery of any kind. From my reference point, I'd make the same decision again if I was in your situation.
 
understood ... I see you have not mentioned aneurysm yet ... that's something that's on the cards for us congenital bicuspid valvers. In my case it was a primary driver for my third OHS (although the valve was becoming incompetent again anyway).

Apparently my aorta appeared a little large on the cardiac cath but my most recent echo and the CAT scan (which is the gold standard) both showed it to be normal so I don't believe that to be an issue for me, at least not at this time.

As far as I know a valve in valve can only be done once and due to the reduced oriface diameter (of putting a new one inside the old one) lasts less time again.

According to the doctors at Cornell valve-in-valve can be done more than once. They were aware of at least one case in which it had be done 4 separate times. That said, my expectation would be that I would just have it the one time and then have OHS when that valve fails.


do a google search here and see how many people have said that only to find it hasn't

what are you willing to place on that wager? And why?

Point taken. At lot has changed in the 12 years since I had my AVR as evidenced by the fact that we are even having this conversation. At the same time, things have not changed all that much given that the best available option is still OHS with a mechanical valve.
  • what is your aversion to a mechanical, is it anticoagulation therapy? I would say that is much misunderstood, and without co-morbidities (like you can read about here) its a peach. The major issue with warfarin management is not doing it yourself. (see my blog on that)
    Yes, aversion to anti-coagulation therapy. Fear of having future health issues that require surgery and/or other treatments. I have some knee issue and arthritis that I think will likely have to be addressed at some point down the road.
  • what happens if due to life circumstances (and the pernicious US Medical insurance) you find yourself without a job, and need that other surgery?
    This is a valid point that I had not considered.
  • explore carefully the aneurysm issues and your risks.
    As I mentioned above, based on my CAT scan this is an issue for me at this point.
  • I think its not wise at this stage to go for an experimental procedure when there are good options with decades of experience.
    Agreed, that's the main reason I'm balking at the TAVR. But still it's tempting...
 
tom in MO;n884010 said:
I am pretty risk averse so for me the proven track record of the mechanical valve would outweigh the unknowns of the TAVR procedure and not having to use warfarin. That being said, I do have problems with warfarin since if you are on it you can't take the good arthritis medications. At 55 I chose mechanical because I didn't want another heart surgery of any kind. From my reference point, I'd make the same decision again if I was in your situation.

Tom, I have a bit of arthritis in one of my knees and in my feet/toes. It's not bad now but I expect that it will continue to progress as I get older, as arthritis tends to do. What do you mean you can't take the good arthritis medications? Can you elaborate?
 
honeybunny;n883994 said:
my sense of your situation is that the doctors are nudging you in that direction for their own ends. That’s just the feeling I get from reading your post. I myself am in a clinical trial so it’s not that. If you are leaning toward tissue with the OHS perhaps the TAVR would be worth the risks. But if your goal is to avoid a third surgery, I recommend OHS and mechanical for peace of mind.

Sorry if I gave that impression. The surgeon I met with said that TAVR would not be a good option due to questions about valve longevity - he is not associated with the TAVR program at the hospital. The surgeon that I met with that oversees the TAVR program said that OHS mechanical would be the by the book approach and is a good option, but that if I am considering a tissue valve I should not have OHS and should instead go with TAVR. He basically said that TAVR would be a good option and does not preclude having OHS in the future when the TAVR valve fails.

When speaking about it above I was not really considering the TAVR to be an OHS, since it is not. In other words if I went with TAVR, when that valve needs to be replaced I would think of that as my second OHS. However, maybe that's splitting hairs a bit because even though TAVR doesn't involve a sternectomy, it does carry similar risks and so should avoid the trap of thinking of it as something less.
 
MRiordan29;n884012 said:
At lot has changed in the 12 years since I had my AVR as evidenced by the fact that we are even having this conversation.

At the same time, things have not changed all that much given that the best available option is still OHS with a mechanical valve.

Agreed, From where I see things not so much has changed, except better management of AC therapy .

Yes, aversion to anti-coagulation therapy. Fear of having future health issues that require surgery and/or other treatments. I have some knee issue and arthritis that I think will likely have to be addressed at some point down the road.

Did you read my blog about my perioperative experience with managing my warfarin?


Best wishes with the decision. As mentioned, feel free to call and chat
 
but that if I am considering a tissue valve I should not have OHS and should instead go with TAVR. He basically said that TAVR would be a good option and does not preclude having OHS in the future when the TAVR valve fails.

In that case, I would select the TAVR in lieu of OHS for another tissue valve. Thanks for the clarification.
 
MRiordan29;n884014 said:
.... The surgeon I met with said that TAVR would not be a good option due to questions about valve longevity - he is not associated with the TAVR program at the hospital. The surgeon that I met with that oversees the TAVR program said that OHS mechanical would be the by the book approach and is a good option, but that if I am considering a tissue valve I should not have OHS and should instead go with TAVR. He basically said that TAVR would be a good option and does not preclude having OHS in the future when the TAVR valve fails.

...when that valve needs to be replaced I would think of that as my second OHS. However, maybe that's splitting hairs a bit because even though TAVR doesn't involve a sternectomy, it does carry similar risks and so should avoid the trap of thinking of it as something less.

thats an interesting slant.

So if I'm reading this right the option of having a TAVR would give you another 5 to 10 years without need for a OHS (and yes I knew that TAVR was not OHS), but that (as I mentioned above) after that is exhausted (with a possible extension for valve in valve and all that that brings) you'll be facing "what do I do next" ... correct?

I see that you are hedging on the hope that some as yet unknown thing will appear and you will avoid somehow an OHS at that time.

I would also seek greater clarification on the risks of stroke as a result of calcium dislodged into your heart when the TAVR is done (you can google that as there is an amount written on it)

To my mind this option essentially grantees you are "back in the waiting room" with visits to the system at least yearly and the attendant anxiety of "will it still pass again this year".

I would strongly suggest you really get to the facts and reality of management of AC therapy and get a handle on exactly what that means and what the actual outcomes are for management of that around surgery (not just "there's a risk" .... because most people have zero traiing in proper analysis of risk managment).

So, do you want to be "an experiment" or just go with the solution that we know works. and we know quite fully what its risks are?

Myself I was "an experiment" in 1991 when I had a cryopreserved homograft. I'm glad that I got excellent results out of that (well above median for my age group), to which I attribute the skills of my surgeon, my own health management and luck.

If you'd have asked me before I had to learn about warfarin I'd have probably said it was problematic, but having spent the last 6 years learning about it in a serious (mostly part time) manner I can say that its not what its made out to be. Big Business (Pharma / Hospitals / Clinics) does not make much money out of $30 a month medications and $6 a test disposable strips.

If you didn't read my blog posts in detail you may have missed the talk by a Mayo surgeon, let me present a segment that's relevant to this discussion:



Best Wishes
 
MRiordan29;n884013 said:
Tom, I have a bit of arthritis in one of my knees and in my feet/toes. It's not bad now but I expect that it will continue to progress as I get older, as arthritis tends to do. What do you mean you can't take the good arthritis medications? Can you elaborate?

Most of the NSAIDs like ibuprofen, meloxicam, etc. have associated bleeding issues (usually in the stomach) that are exacerbated by warfarin. However NSAIDs can be a god-send for someone with arthritis, particularly in the knees and back. For example, I can take ibuprofen but at no more than the maximum OTC dose and for no more that 2 months. They won't prescribe meloxicam to me, but my lady loves it for her arthritis. Of course they can replace my knees, but I'm not ready for that...yet :)

For me, I don't regret my mechanical valve, but since I cheat on the ibuprofen (I take less than the OTC max dose but sometimes go longer) I like to keep my INR in range at 2-2.5. I don't believe that letting it go higher (e.g. 2.5 - 3.5) is risk free like some do.

I also don't believe the risk of aneurysms is high enough in BAV people to drive a choice between mechanical vs. tissue. As noted, even with a tissue valve, you may need warfarin, that was the case with my mother-in-law. Most that do are elderly. Elderly patients often need warfarin for issues not related to their valve.

By the way, don't forget surgeons are people and are strongly biased individuals, otherwise they wouldn't be surgeons and OHS are some of the most biased. They live for the glory of the next breakthrough, which can only be achieved by a volunteer patient. When I had colon problems, one doctor told me surgeons like to solve everything with a knife thus for most illnesses they are useless :)
 

Latest posts

Back
Top