Making the choice: RP, homograft, mechanical, tissue

[Peter Easton]

A new member here, facing the fabled decision about valve type and surgery whereabouts. I benefitted from reading thread posted by Peachy.

I am a 59 year old male, congenital aortic stenosis type who has been aware of the impending condition since my sister first had her surgery some 10 years ago. (My Mother actually had a related and successful surgery as well, at the age of 86, no less.) My cardiologist said to hold off till I was symptomatic. Symptoms commenced two months back, more or less. They have worsened, but aren't really very severe -- yet echocardiogram (standard, not TEE) reveals that I am down to 0.6 square cm of aperture, which is, in the official lexicon, just above comatose, I gather. So not too much time to twiddle the thumbs.

I have been considering and studying up and asking about the same question that concerns everyone: which valve, which surgeon? Other things being equal, which they never are, I would prefer avoiding Coumadin. I also gather that there is a small but cumulative failure rate with mechanical valves that makes the likelihood of some sort of mishap appreciable over a period of 10-20 years or more -- and that malfunctions with mechanical valves tend to happen all of a sudden, with little advance warning, unlike deterioration of tissue valves.

The options seem to be (a) Ross Procedure -- not often done with folks my age (though cardiac and general health are more of a consideration than chronological age), due to cross-clamp time and complexity of procedure, but not unknown in the over 55 group either; (b) homograft; (c) new improved bovine or tissue grafts, like Cryograft-S (sp?); and (d) the mechanical ticker. I am intrigued by the RP and its potential for long Coumadin-free function and have found folks on the RP listserve very congenial and supportive (doutless just like those on this one), but it is evidently a borderline call. The rule of thumb that one should go, whatever the procedure, with those who have done a LOT of it would probably mean my traveling out of State (Florida) to, e.g., Cleveland, Beth Israel, Elkins' shop in Oklahoma or the IHI in Missoula, Montana. Other valve replacement options could probably be handled in Tallahassee.

Any advice, happy or horror stories or other viewpoints on the issue would be appreciated. One thing that complicates the quest -- and that I see reflected in other people's postings -- is that both the cardiologists and the surgeons seem to be divided into several camps on these issues and it is rare to get what one might call an objective overview, even when one eliminates the occasional turkeys and blow-hards. Well, it's all what those in my own field of adult education would call a "teachable moment"! Look forward to the lessons you might want to share, with excuses for the length of this posting!

Peter

 

[martha]

Welcome to the group peter. I had an aortic replacement on 12-15-00 at duke hospital in Durham North Carolina. They are number five in the country in heart. I choose a homograph and am very happy with my choice. The decission is a hard one. There are those on this list who have all different kind of valves. They will come along shortly I'm sure to tell you of there choices and why. I decided agenst the coumiden, and new the ticking would drive me crazy. As you stated if the machanical goes bad you have little warning, where as the tissue valves go bad over time.

The waiting is the hardest part. Keep posting, it's good to hear from you. martha

 

[BillC]

Homograft

Homograft

Hi Peter .. and welcome to the group. Sounds like you've certainly done your research, and you're down to the hardest decisions of all. I am 53 y/o and my AVR was 4-10-2000 (Houston). I chose the homograft valve and am very pleased with that decision. It's great not to be on coumadin and not to hear the ticking of the mechanical valve. It was the coumadin that was the deciding factor for me. Even though I may be facing a re-op in 15-20 years, I feel that the medical advances will be so extraordinary by that time, that it's worth it to me to face this option. I'm sure you'll hear from those with the R-P and of course most have the mechanical valve. Good Luck with your decisions. If I can answer any more questions, please don't hesitate to email me privately. Take care ~ Bill Clifford

 

[srwieland]

Welcome Peter to our group. Glad you read the stuff in response to Peachy. I'm Steve in Florida (Gainesville) and am the one who had the CryoValve-SynerGraft valve implanted two months ago.

It's a good thing there are choices and, in the end, it's got to be yours. After hearing from a variety of other experiences, the most important thing is that you are confident in your own choice.

By the way, if you don't want to travel too far, you might consider Shands Hospital at the University of Florida in Gainesville. That's where I had my surgery and I highly recommend them. My surgeon was Dr. Tomas Martin and the dean of surgeons (retired from doing the procedures himself, though) here, Dr. Jim Alexander, is a personal friend of mine.

Good luck and Godspeed. Keep us posted and we'll try to help as best we can.

 

[Kevin M]

Peter, the great thing is that there are so many options.
Twenty years ago, this would not be the case.

It sounds as though you've done a lot of your homework already.

Here are some things I came across when making my recent decision. They are my opinions only. Others may disagree - that's why this decision is so difficult for some of us. These things are personal and the information is rarely black and white.

I too was interested in the Ross Procedure, but my surgeon steered me away from it. They have done the procedure here, but weren't happy with the risk or the results. It sounded to me like it was more of a philosophical choice on their behalf. I liked the idea of it, but had also read some medical journal stuff that kind of bothered me. Nothing specific or statistically important, just some instances where complications occured and reop was necessary. I began to be concerned about jeoparidizing a perfectly healthy valve for the purpose of fixing a bum one. Others here have gone with the Ross and are perfectly happy. I understand it is a very complex procedure and you'd certainly want someone who has done a lot of them.

My first AVR was a homograft, installed in 1990. It gave me a decade of very active living with virtually no symptoms. The only down side was its lifespan. By the time they pulled it out of their, I suffered from stenosis (0.66 aperature) and some pretty bad leaking. My Homograft was classified at Grade IV just before my second operation. The symptoms were getting pretty severe. My surgeon recommended against the homograft this time because of the calcification and deterioration problem. I'm not sure mine is a unique instance and I burned the thing out faster than normal, or if it is a common occurance for a homograft. All I can say is that when I had the homograft, I was extremely pleased with the lifestyle it afforded me. If it weren't for the lifespan in my case, I would've had another without any doubt in my mind.

Like you, I did not want to be dependent on coumadin. I travel a great deal. Often to countries with poor to non-existent medical facilities. More frightening to me was the idea of being tied down to diet, monitoring and the unpredictable nature of Coumadin. It reminds me of a diabetic. I do not want that in my life unless it's absolutely necessary. Peter, it sounds like you have already explored the risks involved in using coumadin on a long term basis. I know they are rare, but when doctors talk about some of the things that can happen, I really didn't want to have any part of that. Again, there are many, many people here who have mechanical valves and are extremely happy with the lifestyle it affords them. Personal choice is so important in this matter, isn't it?

In the end, I went with the Medtronic Freestyle; a SPV. My doc said they haven't demonstrated the same calcification problems as the homograft. There isn't any long term data (I found some sketchy 10 year data, but most is 5-7 year), but the shortterm stuff looks promising. The doctor says he thinks it'll last 20-25+ years. That's what they said with the homograft. If I get another decade or even 15 out of it, I will be happy, despite the fact I will likely face a third APV before I'm 50.

There are also the bovine and Cryo-Synergraft options. Steve In Florida had the latter. I don't know of anyone with an Edward Carpentiers Bovine, but someone posted some stuff recently on it and it sounds like there are tons of them out there. I don't know anything of these options.

Peter, I found the National Library of Medicine to be a good resource, despite the fact I lack the ability to understand much of the technical information.

The address is:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

Do a search of PubMed for the topic(s) of choice and it'll allow you to see abstracts of many published medical journals. I think you have to pay to get the full articles, but the abstracts provide a nice tidy executive summary that I found easy to understand. I had typed in "SPV" and located probably 30 articles comparing SPV's to other procedures. This information helped me to become more comfortable with my decision.

The bottom line is that ANY of today's options will ensure a healthy and active lifestyle for your future.

As long as you are prepared for the possibility of a second AVR in your 70's (of which they do an enormous number), I would say you couldn't go wrong with any of today's biological choices. Steve In Florida's Synergraft piece is a good example of where technology is going. In another 10-20 years, there will be even more choices for us as a group.

Heck, even the new blood thinning drugs that are coming out make mechanicals sound more attractive for those of us who don't want Coumadin.

Good luck with your decision. Please let us know what you decide.
Kev

 

[Bob Gleason]

Welcome Peter

Welcome Peter

Can you please tell me the source of your reference to the failure rate of mechanical valves as indicated in your post, specifically your paragraph 3?

I would appreciate this information as I do have an ongoing concern about failure rates of mechanicals and in my case, I have the St Jude, and my surgery was performed by Dr Eric Rose of Columbia Pres Hospital, NYC.

My mechanical was implanted 11-4-99 and because I also had a dacron conduit to replace my aortic arch and root, I was told that my best option was the mechanical.

Thanks and welcome to our group.

 

[Peter Easton]

Really helpful stuff

Really helpful stuff

Thanks very much, Kevin, for the time you took on this really informative response. It does seem as though the playing field were evening out somewhat among the options. One odd phenomenon in this field, I find, is that those of us who end up doing a good deal of research on options -- given our very personal, not to say downright corporeal, interest in the results -- end up infinitely less technically proficient than the medicla people who have been there, and yet sometimes more aware, or at least attuned to, the OPTIONS. Most of the medical folks with whom I have talked appear to be more or less in one camp or another, with shades of emotional commitment. Makes wading through the arena a bit more challenging.

Peter

 

[Peter Easton]

Re: Welcome Peter

Re: Welcome Peter

I will have to check it out, Bob, in my increasingly thick three-ring binder of articles and abstracts and what-not, not to say the correspondance received from those on the RossProcdure listserve -- but should be able to do that by this evening or tomorrow, as I am at the same time prepping for upcoming interview with potential surgeon.

Peter

Can you please tell me the source of your reference to the failure rate of mechanical valves as indicated in your post, specifically your paragraph 3?

I would appreciate this information as I do have an ongoing concern about failure rates of mechanicals and in my case, I have the St Jude, and my surgery was performed by Dr Eric Rose of Columbia Pres Hospital, NYC.

My mechanical was implanted 11-4-99 and because I also had a dacron conduit to replace my aortic arch and root, I was told that my best option was the mechanical.

Thanks and welcome to our group.

 

[Tammy]

Hi Peter and Welcome.
I have mechanical Mitral Valve that I received in 1989. I was 26 at the time and the Doctor's pretty much made the choice for me.
I am happy with their decision and have not had any problems or complications in 12 years. (or only minor ones)
I am now looking at AVR in the future due to Rheumatic Heart Disease. I am currently at 1.04 cm. Hoping that will be a slooow progession.
It is certainly a personal choice and it sounds like you are doing all the right things.
Because of my age at the time - mechanical was right for me. Although regardless of age, the prospect of another surgery to replace a homograph would not be an option I would lean towards. The Cryovalve seems to offer the most promise if it turns out to be all they say.
Good Luck in your decision.


Tammy

 

[Herb M]

I had a St. Jude mechanical aortic valve replaced in 1988. I do not find coumadin a problem. My readings have been relatively stable over the years and hardly any adjustment in my dosage was needed. The diet is not a problem at all. If you routinely eat a lot of greens it will show up in your coagulation times and your dosage will be adjusted for the type of diet you eat. I eat occassional greens and it has not affected my readings.

I do not hear the valve clicking. When the room is very quiet and someone is very close to me (almost touching) they hear a ticking like a watch. I do not think the clicking or diet should have much weight in the decision on the the type of valve. Although coumadin is a concern to some, it has not been to me. There are added benefits such as a lower risk of blood clots and strokes. Also there are new medications being tested which may replace coumadin and will not require diet restrictions or frequent blood tests. So the decision is benefits versus risks when evluating the probable life of a valve, your own life expectancy and whether or not a second replacemet valve will be needed in your lifetime.

It is a difficult decision and you will find that various type of valves have been chosen by the Forum participants and they all seem to be happy with their choice. Get a good surgeon and you will be happy with any valve you select.

 

[ALCapshaw]

Hello Peter,

Welcome to the "decision matrix".

Did you read the response to Peachy from Ken under 'Biological or Mechanical'?

He copied a lengthy article on the Carpentier-Edwards Bovine Valve. I'm surprised not to see any recipients represented here. It seems to be well thought of at the Cleveland Clinic which is the #1 rated heart center.

I would ask your cardiologist about the accuracy of the regular Echo in determining valve aperature. My understanding is that the TEE is much more accurate. My TEE indicated a moderate aortic stenosis vs. the borderline moderate to severe rating calculated from a catheterization. The old adage "Measure Twice, Cut Once" seems appropriate

When talking with potential surgeons, I would ask what valves they use on a regular basis. Apparently, most surgeons zero in on a few favorites so you would be well advised to select a surgeon who has considerable experience with the valve of your choice.

My surgeon told me he would not do a homograft on me because it requires removing part of the aorta (he doesn't like removing good tissue if not necessary) and I have bypass grafts attached to my aorta which makes the surgery more complex and time intensive.

Let us know what you decide.

'AL' (age 57 with moderate Aortic Stenosis and Mitral Regurgitation)

 

[Simon Gee]

Warfarin no problem for me

Warfarin no problem for me

Hi Peter,

I had a bicuspid aortic valve replaced last year with a St Judes. I too did as much research as I could and have been very happy with my decision, especially the reduced possibility of a further operation.
My main point to you is that I find taking Warfarin a minor inconvenience, although this was the factor the played most on my mind when making my decision. I have maintained my diet pretty much as before, and it includes a reasonable amount of green vegetables, and I have moderated my alcohol intake so that I enjoy one or two glasses of red wine a day plus the occasional beer. I am now having a blood test every eight weeks at the clinic in our village and my INR seems pretty stable. I guess I'm very lucky, judging by some of the stories on this site, but I have found the anti coagulation no problem.
As for hospitals, I'm in England, so I can't help you much but Dr Tony de Souza operated on me at the Brompton Hospital in London and I can recommend both of them to anyone here in the UK.
Whatever decision you reach, good luck.

 

[Peter Easton]

Re: Warfarin no problem for me

Re: Warfarin no problem for me

Thank you, Simon. Having the operation done in London and then recuperating in the British countryside actually sounds pretty therapeutic ... though out of the present realm of the possible. (I did have one "procedure" done in London in my salad days, actually: a week for a thorough check-up at the London Institute of Tropical Medecine after returning from years in Africa, quite a probing experience.)

You mention 8-weekly INR blood checkups in your local clinic. I gather the regime is weekly here. Any explanation for the difference?

Best,

Peter

Hi Peter,

I had a bicuspid aortic valve replaced last year with a St Judes. I too did as much research as I could and have been very happy with my decision, especially the reduced possibility of a further operation.
My main point to you is that I find taking Warfarin a minor inconvenience, although this was the factor the played most on my mind when making my decision. I have maintained my diet pretty much as before, and it includes a reasonable amount of green vegetables, and I have moderated my alcohol intake so that I enjoy one or two glasses of red wine a day plus the occasional beer. I am now having a blood test every eight weeks at the clinic in our village and my INR seems pretty stable. I guess I'm very lucky, judging by some of the stories on this site, but I have found the anti coagulation no problem.
As for hospitals, I'm in England, so I can't help you much but Dr Tony de Souza operated on me at the Brompton Hospital in London and I can recommend both of them to anyone here in the UK.
Whatever decision you reach, good luck.

 

[Peter Easton]

Re: Welcome Peter

Re: Welcome Peter

Bob --

I located one of the references that you asked for, which actually puts the failure rate per patient year a bit higher. Check out --

http://www.hsforum.com/stories/storyReader$1472

down in the second or third paragraph on mechanical valves. Let me know what you think.

Best,

Peter

Can you please tell me the source of your reference to the failure rate of mechanical valves as indicated in your post, specifically your paragraph 3?

I would appreciate this information as I do have an ongoing concern about failure rates of mechanicals and in my case, I have the St Jude, and my surgery was performed by Dr Eric Rose of Columbia Pres Hospital, NYC.

My mechanical was implanted 11-4-99 and because I also had a dacron conduit to replace my aortic arch and root, I was told that my best option was the mechanical.

Thanks and welcome to our group.

 

[Gerry]

Hi Peter and welcome to the site.

I sense strong deja vu here - you are on the same road I was in August last year which lead me to AVR in February this year.

Your approach is also the same as many of us - you have the benefit of the internet and this site.

You need to keep researching, asking questions and seeing surgeons until the right choices "pop" out at you. You'll know when you get there and you will be comfortable with your choice.

I understand today's bileaflet mechanical valves are as good as faultless for life - so that shouldn't be a concern. The main factors are really Coumadin or not versus a re-op or not. A minor factor (if it worries you) is on-pump time. If you can live with the prospect of another op down the track, then definitely consider a tissue valve. If the second op really puts you off, then lean to the mechanical. If you do consider mechanical, suggest you look at the ATS valve - the next generation of improvement over the St Jude. It's made by the former owners of St Jude and offers certain advantages.

RP is controversial and not really recommended for the "mature" patient. Also, you really need the "best" surgeon to do it and one who has done many before.

Whatever you decide, make sure you go for the best surgeon you can find. Reading some of the excellent posts that your query has evoked, you could do a bit of a mini research amongst the members here. Certain surgeon's names keep cropping up. Do not feel afraid to travel to have your surgery if it means getting the best (although London might be stretching it). I travelled 3,000 miles across Australia to find the best surgeon in the country and I have no regrets. I even went back for a "tune up" after 5 months.

Hope this helps

Regards

 

[DickV]

I agree with Gerry. I too have tons of data and found the standard SJ Mechanical free of defects except those attributed to damage while being implanted which is why people here also stress the need for an experienced cutter.

Mechanical valve people really do not have the worry about the thing crapping out but as you will read, everything has a trade-off. Ours is Coumadin which I see as no biggie for me.

Go into Valvereplacement.com and read the personal stories.

 

[Peter Easton]

Thanks, Gerry, and glad to hear that your experience -- cross-continental, no less -- has been so positive. If I could wangle a trip to Australia out of this, I'd definitely consider that route. Closest I have been is Indonesia, and that was a while back.

I am pursuing the study-and-choose route, though how much latitude I will have for making a well-deliberated choice and interviewing all the principal suspects remains in some doubt, since my aortic aperture is apparently down to 0.6 cm2 and counting.

The basic mechanical-tissue tradeoff seems to be just what you mention, though there are those who apparently now hold out hope that some of the newer bioprosthetics -- like (if I have the names straight) the Cryovac Synergraft or the C-E Pericardium -- may in fact be much longer-lasting than earlier tissue options, maybe quasi-permanent. Thing is, those are obviously matters that can't be demonstrated without a lot of longitudinal experience that we by definition don't have at present.

The RP has a bit better press for middle-agers-and-beyond here in the States than you imply or seems to be the case in Australia, as operation times and complexity of the operation seem to be diminishing. Have found several studies on results of RP with patients over 55, and they compare favorably with other procedures, but I think the patients in question were hand-picked as healthy specimens. Happily, on that end of things, my catheterization reveals clean arteries and a healthy heart, excepting the minuscule aortic opening, and I am a pretty hale non-smoker etc.

There are a number of surgeons here who have done several hundred or more RPs. Personally, I am leaning now towards one -- like a person much recommended at the Cleveland Heart Clinic -- who is practiced in going either way. Will post my findings... or my constrained choice if I navigate the remaining 0.1 cm2 of aperture more quickly than anticipated!

Best,

Peter

 

[Peter Easton]

More on mechanical valve failures

More on mechanical valve failures

Here's a cross-post from Mike on the RossProcedure listserve forum that might add more substance to the discussion. I include his e-mail (hope he doesn't mind):

"A factor to weigh in compairing risks: My surgeon pointed out to me in the presurgery interview that there is about a 2% per year morbidity/mortality rate related to coagulation. Thus, over a twenty year span on a mechanical valve, you have about a 40% chance of having a major coagulation problem. "

Mike Murray
<[email protected]>

 

[DickV]

I really doubt the mortality rate as stated in your post unless it includes ALL people on coumadin which is a much different control group than valve people. There are people with many different and really serious forms of complications which involve coagulation and many already have one foot in the grave. Very few people here take everything that comes out of a doctor's mouth at face value. One thing you will learn on this board is that many doctors don't really know what the hell they are talking about.

Most people here don't put much value on dr's opinions unless it is backed up by some medical research and we have a good time tossing those around too.

 

[Jan]

mechanical or Tissue

mechanical or Tissue

Hi Gerry
In your reply to peter you mention the ATS valve as being the next generation too the St Judes would you please explain the difference to me;I have aortic stenosis and am waiting for a date for valve replacement I see the surgeon on July 31st and I would like to be able to discuss options with him, I have read other posts with interest and I think I would prefer taking warfarin to second surgery I,m not sure what choices I will be allowed to make with our NHS but I would like to be able to talk to the surgeon about what is available I was told about the surgery 3 weeks ago so all this is new to me
Thanks
Jan