Confused, please provide guidance and input

[coryp]

Hello All,
As a reminder to my case, I have been diagnosed with Aortic Bicuspid valve (moderate regurg) and a 5.0cm Ascending Aortic Aneurysm. These are certain, two things not confirmed yet are 1) if the Aneurysm has reached the Arch 2) the root status. This maybe written incorrectly but the best I can for now. If you have questions I maybe able to answer more intelligently.


I am back from my 3rd surgical consult today and also did and mri/mra with contrast (for my final consult tomorrow, btw this doctor is the only one that wanted the MRI even though I have already done SPiral ct and angio).

It seems like all three surgeons suggest doing a full Bentall with a st jude mechanical valve. BUT now that I was much more informed (thank you all for the wonderful input) I was able to discuss other options with the surgeon and based on my lifestyle (active) 34 yr old (2 kids) and demeanor, I asked about a ross procedure with porcein valve or stentless porcein. 1) This surgeon has never done a Ross and explained that they are mostly being done on children 2) He said we could go with a porcein valve but reccomended a stented version not stentless? He said if I wanted to stay away from the Coumadin than Porcein stented is the way to go because he would make the surgery that much easier as well. He would not have to reimplant the Root (Button) and only cover or wrap the Ascending Aorta rather than remove the entire piece and if required Deep hypothermic arrest for the root, he though a HEMI would be in order as it looks as if only a portion is involved with the ANeursym.

Again he did not have access to ANY MRI/mra which will be available tomorrow for my final consult. Weird thing as I did the test today they doctor got the surgeon on the phone (they told me afterwards) to discuss findings and find out my background. When I came out of the MRI the tech had some questions about what brought me here etc etc and I kinda felt like he found something else wrong other than what I was there for. He would not tell me stating he didn't make the big bucks and the doctor would discuss it tomorrow. He did show me the photos and the root did look larger. But hey I am NO DR. It seems like the more and more tests I do, they keep finding out that it is more a difficult situation than expected. But I guess better than finding out on the table and not prepared.

I have been doing some reading and found that many of you have good reasoning for the surgery you chose. I still feel like I am undecided on 1) surgeon (will make that tomorrow) and 2) the type of procedure OR valve.

I am concerned with the ticking noise and coumadin changing my lifestyle as well as if I go ahead with the Bentall the more difficult surgery. I am thinking that If I have a good case with a porcein that can last for 15 years than maybe technology will allow me another through Cath VS. OHS. Can any non mechanical last for 15 + years? Any first hand experience with this? Thew surgeon said that my body may reject it in 5 years and then back to the table for another (don't know If I want to go through another as I have not made the first yet) . I also beleive that If I have to do another surgery than I would rather when I am 50 and strong vs 60-65 and weaker.

If I go with the porcein (stented or stentless, don't know the diff) and keep the surgery simple without reimplanting the roots than I may have to come back for that in a few years as well? Too many if's and unknowns out there confusing me.

Your thoughts are appreciated

thank you

 

[tobagotwo]

Just some things that may help clarify...

As I interpret my research, the top-rated porcine valve is a stented valve, the Medtronics Mosaic. The top-rated bovine valve, the Carpentier-Edwards Perimount Magna, is also stented. Both are specially treated to avoid early calcification. Either should outlast the top-rated, but untreated Toronto stentless in most situations. I would agree with the surgeon, and go with either the porcine or the bovine stented valve, if I were to go with a xenograft.

However, at your young age, it would be unlikely that you would get ten years out of a xenograft, even a treated one.

A mechanical would likely last 25-30 years before requiring replacement. It won't wear out, but your body may coat it, put scar tissue around it, or have damage to where it is mounted, causing it to have to be replaced by that time. That long time between surgeries can be highly important, particularly if you have tissue problems (you do). One of the problems that sometimes accompanies tissue problems like extensive aneurisms is that the tissue the valve is sewn into can become grainy and weak (myxomatous). Sewing repeated valves into it can potentially damage it beyond usefulness.

The Ross Procedure is indeed done on adults, and has been successful in people into their seventies, although it is believed to have a greater success rate in people under fifty. It should only be done by someone with a good track record, who can properly gauge if the tissues are appropriate for the job, and is willing to abort to a backup plan if they aren't..

However, it may not be the best solution for someone with the tissue problems you face.

I am a proponent of tissue valves, but I would seriously consider a mechanical valve in your position. The ticking really shouldn't be an issue.

Coumadin is not nothing, but it is not the end of the world, either. There are many here who deal with it very successfully, and who don't feel that it interferes with their quality of life at all.

I believe you should discuss with your cardiologist what the expected path of your valve and aneurism problems is for the future, and make your decisions with those expectations in mind.

Best wishes,

 

[coryp]

Just some things that may help clarify...

As I interpret my research, the top-rated porcine valve is a stented valve, the Medtronics Mosaic. The top-rated bovine valve, the Carpentier-Edwards Perimount Magna, is also stented. Both are specially treated to avoid early calcification. Either should outlast the top-rated, but untreated Toronto stentless in most situations. I would agree with the surgeon, and go with either the porcine or the bovine stented valve, if I were to go with a xenograft.

However, at your young age, it would be unlikely that you would get ten years out of a xenograft, even a treated one.

A mechanical would likely last 25-30 years before requiring replacement. It won't wear out, but your body may coat it, put scar tissue around it, or have damage to where it is mounted, causing it to have to be replaced by that time. That long time between surgeries can be highly important, particularly if you have tissue problems (you do). One of the problems that sometimes accompanies tissue problems like extensive aneurisms is that the tissue the valve is sewn into can become grainy and weak (myxomatous). Sewing repeated valves into it can potentially damage it beyond usefulness.

The Ross Procedure is indeed done on adults, and has been successful in people into their seventies, although it is believed to have a greater success rate in people under fifty. It should only be done by someone with a good track record, who can properly gauge if the tissues are appropriate for the job, and is willing to abort to a backup plan if they aren't..

However, it may not be the best solution for someone with the tissue problems you face.

I am a proponent of tissue valves, but I would seriously consider a mechanical valve in your position. The ticking really shouldn't be an issue.

Coumadin is not nothing, but it is not the end of the world, either. There are many here who deal with it very successfully, and who don't feel that it interferes with their quality of life at all.

I believe you should discuss with your cardiologist what the expected path of your valve and aneurism problems is for the future, and make your decisions with those expectations in mind.

Best wishes,

One other thing, I have been told that my congenital valve issue most likely lead to my aneurysm, and once removed that should be the end. I am very healthy why would tissue problems be an issue in future?

 

[coryp]

One other thing, I have been told that my congenital valve issue most likely lead to my aneurysm, and once removed that should be the end. I am very healthy why would tissue problems be an issue in future?

One last addition (I really do not understand all the intricate details of the heart so this may sound foolish). Talking about tissue issues, does this mean I am on a course for heart failure and maybe even require a transplant?

How could I get like this? Or my tissue for that matter?

Freaked out

 

[Big-Chuck]

issues

issues

Hello, even though I have different issues than you, mitral valve prolapse, I told the surgeon if he cant repair my valve, it is shot, please install a mech. valve as I dont want to have to go thru this again. Anyone can learn to deal with the coumadin if they have too, it is a minor issue compared to having an additional surgery down the line. anyway my 2 cents worth. I am 56.

 

[T-Money]

Surviving With a Mechanical

Surviving With a Mechanical

Hi Corey.
I'm 32 and was not really presented with other options on my valve. Both surgeons I consulted with told me that I should go mechanical, period. I tended to buy into their argument because of my concern with the odds of a second OHS and the time gap in between. You can live with the ticking. I only notice mine when I concentrate on it. Sometimes my wife can hear it. The Coumadin business can be a hassle. Mine is right now. However, there are a bunch of people here who are doing great managing their Coumadin and INR levels. I hope I am one of those one day (and I think I will be). But....I can also fully understand that not having to deal with Coumadin, diet, and alcohol restrictions would be awesome and may even be worth a greater probability of replacement in the near future. One of the best pieces of advice I ever got was that I should make my decision based on what is available today vs. what might be there in the future. I would've love to wait a few extra years to see if the cath. based biological valve procedures worked out (one was completed fairly recently if I recall). But, there are no guarantees and I had to make my decision fairly quickly. The surgeons and odcs told me that I would return to an active lifestyle after 3 months. By this I mean full court basketball, other team sports (rugby and tackle football are out, though), biking, running, etc. Unless you are into knife fighting, boxing, or ultimate fighting, you will probably be able to do most of what you want to.

On the 'tissue issues', I think (and I may be wrong, so correct me if I am) he is referring to the quality of the tissue to which your new valve will be attached. When you have an aneurism, I believe that the tissue is weakened somewhat and becomes more difficult for a surgeon to work with after the 1st OHS. My understanding is that if you were to subject that tissue to multiple valve replacements, it could become weak and difficult for a surgeon to attach a replacement valve to. Again, someone with more knowledge should correct me if I am wrong here. I also doubt that this problem could cause you to require a transplant.

 

[Karlynn]

I'm not sure what activities your active lifestyle includes, but we do have many active members here who have mech. valves and take Coumadin. We have marathoners, cyclists, triathletes etc. etc. There is so misinformation about Coumadin and what you can and cannot do when taking it. Al Lodwick has a list on his site www.warfarinfo.com that lists outrageous information given about Coumadin. If you do end up choosing a mechanical valve, your best resource for correct, current information is Al Lodwick.

You spoke of having to have a tissue replaced at age 50, but you also need to project past that. Consider the fact that you may have 4 total valve replacement surgeries in your lifetime if you live to your early 80's. That's a lot of scar tissue present for the latter surgeries, which makes them more difficult.

I don't know what the tissue issues ( ) are with you, but if you have the type of tissue that becomes fragile, the fewer surgeries the better.

My mechanical valve has been working well for over 13 years. The echos I have done annually show that it and the surrounding tissue are in good shape with little calcification. The most important positive of having my mechanical valve is that it allowed me to raise my children from early grade school through college (so far) without having to put my family through another open heart surgery. We've traveled to Europe for the first time at just about the time I would have had to have a tissue valve replaced. I'm glad I was in Europe and not home recovering. Coumadin does have it's own issues, but for me, the trade off has been well worth it.

As I just wrote to another member. You make your best guess/choice and then don't look back.

 

[PapaHappyStar]

Hi Cory,

I am not an expert, I can try to put down my understanding of research into bicuspid valves I have picked up and read since I've been diagnosed with aortic valve stenosis due to a congenitally bicuspid valve.

Two of the causes of congenital bicuspid aortic valves are:

-- a glitch in early embryonic development leading to a fusion/malformation of the aortic valve leaflets

-- a genetic problem usually involving a tissue disorder that makes the aortic tissue 'stretchy' and different from normal tissue

There maybe more -- but most papers seem to suggest these are the main possibilities for a bicuspid valve.

What complicates things is there is no agreement that the presence of an aortic aneurysm necessarily means you have the 'stretchy' tissue abnormality. The aneurysm may be due to the creation of a high speed 'jet' of blood from the blocked valve striking the sides of the aorta. There is some indication that an ascending aortic aneurysm due to possible tissue problems is present more often in people with aortic valve leakage ( regurgitation ), but there is no real way of identifying causes on a case by case basis, maybe they will come up with a clear genetic signature for a genetic bicuspid valve soon and be able to test for it. I havent heard of anything so far...

The difference between the Ross Procedure and any other valve replacement using artificial valves is that with the Ross they use your own tissue and valve from the pulmonary artery, the pulmonary artery has lower pressure blood flow and thinner walls, if your aortic tissue is stretchy than the pulmonary tissue will be easier to malform due to this propensity to stretch. Many surgeons shore up their sutures and the aortic root area with felt ( dacron ) to provide additional support. This is a tough procedure and requires a lot of patience and skill. You need a top notch surgeon with years of practice at doing this and a good track record. The Ross Procedure is used more often in children because for children it is optimal for the new valve to be able to grow with the heart -- there is no real reason why the procedure should not be as effective in adults as any other valve replacement option given it is properly done. A side advantage is the "autograft" ( new aortic valve ) will often last longer in this position than other tissue valves because our natural living, "uninjured" valves are resistant to calcification. Calcification proceeds slower for the new pulmonary valve -- which is usually taken from a human donor -- since the rate of deterioration is lower in the lower pressure pulmonary side of the heart.

I havent heard of any cases of isolated aortic disease making it necessary to transplant the heart -- I believe 2-3% of people have a bicuspid valve, many dont have any signs of valve disease until their 40's and 50's and sometimes live a lifetime without requiring surgery. So this condition is definitely treatable and dosent involve a great deal of loss of life expectancy I think -- especially in health conscious and healthy people.

Regards,
Burair

 

[tobagotwo]

Here's a post from a while back with links for BAV. The reason I have pushed you towards it is because you have presented so young. I have not heard of transplants being involved.

Very true about the possiblity of other aspects of bicuspid disorder going along with the valve. And that is why I brought up tissue syndrome issues in the discussion.

For balance, it should be noted that not all bicuspid valve owners have one of the associated tissue syndromes. Bicuspid valve owners make up about 2% of the population, but most bicuspid valve owners live their entire lives without ever having to do anything about it.

It has been estimated that about 1/3 of bicuspid valve owners wind up with serious complications, such as aortic valve disease requiring AVR. Perhaps 40% of those that do require AVR also end up displaying some form of problematic connective tissue symptoms to some degree, notably including aortic aneurisms or myxomatous (weakened) tissue.

If you have a bicuspid valve, the real difficulty is in determining which one of these people you are, and choosing your own course accordingly.

It is important to understand this issue as well as you can, as some cardiologists are not strong in the area of current valve information overall, and may be even less aware of potential BAV issues. You need to understand enough about the subject to make sure that he knows what he's talking about.

Some resources, including as mentioned by Rachel:

http://www.bicuspidfoundation.com/
http://www.csmc.edu/3866.html
http://www.csmc.edu/pf_5594.html
http://circ.ahajournals.org/cgi/content/full/106/8/900
http://www.medhelp.org/HealthTopics/Congenital_Heart.html (look alphabetically under "B")
http://atvb.ahajournals.org/cgi/content/full/23/2/351
http://circ.ahajournals.org/cgi/content/full/104/suppl_1/I-21 (regards Ross Procedures and BAV)

Best wishes,

 

[coryp]

Here is the answer

Here is the answer

P.S., I am among those who think you should contact Arlyss. She saved my life. Really.

Hello Rachel and ALL,

I have taken your advice and seen Dr Raissi today (taked to Arlyss yesterday she is great). I liked everything I heard. Here it the forecast, please chime in with your comments and thoughts I would really appreciate it;

1) I will have the entire Ascending Aorta removed
2) I will have to have a hemiarch (under circulatory arrest)
3) I will have the root remodeled (but the coronaries will remain in tact) no button
4) We will go with a EDWARDS BOVINE valve

Let's go over this a little. As per Rachel's last post the entire Ascending must be removed, mood point next, Apparently in Dr RAISSI's experience to make certain that the Aneursym does not re-occur a Hemi-arch MUST BE DONE (clamping the Aortic ARCH is not acceptable at 1-2 inches because the potential for Aneurysm is great). I like the idea of having the ROOT remodeled and not having to reimplant the coronaries (any idea if this is better), sounds better to me.
The last part is the valve selection, I was hoping to go with a Tissue but from what I have read 7-12 years would be the max it would last esp at my age. But I was as you may have read concerned about taking the Coumadin and the other issues regarding the mechanical, well he made it real simple, he suggested that BICUSPIDS (like me) usually with tissue disorder (like me, now I understand thank you Bob) do not do very well on Coumadin long term for many reasons. Also my blood type is 0- and very thin (he said that is also quite common is Bicuspids. We discussed the Porcein vs Bovine and he almost uses Bovine Edwards exclusively, sighting that 96% of patients will get 20 years out of this valve (exactly what I wanted to hear). Actually I went in thinking that if I could get him the committ to 15 years it may very well be worth going with the tissue vs the mechanical for just a few years difference and freedom from the changes. He gave me more than that I feel that if I am able to last 15-20 with this valve then I will be about 55 when I need the next (and hopefully final) valve replacement and at that time he said most should be done by cath, so the real fear of having to do another OPS is greatly reduced.

A few others on this site have voiced similar points and one individual from Texas (sorry I forgot your logon, but I will find it and post you directly) is about to make the same decision.

Please respond with your feedback to this post with thoughts and opinions. I have not finalized just yet but we are looking at a surgical date of the 6-7. I feel pretty good now, first time since starting with the surgeons.

Thank you

 

[Mary]

It sounds really good to me.

 

[tobagotwo]

Just to chime in a few more notes, in a choice between the excellent porcine Mosaic (which I have) and the also excellent bovine Edwards Perimount Magna (or another from that series), based on the desire for the longer-lasting one, I would also choose the bovine, as your surgeon has suggested.

I am glad that you have had an opportunity to discuss your prognosis and the most appropriate approaches to your personal situation with an interested and expert surgeon. After all, no one standing on the sidelines can know exactly what your circumstances are, and it's tough to pitch worthwhile advice to a somewhat complex case from the bench. There are some things, I'm sure your surgeon told you, that even he won't be completely certain of until he is actually there firsthand. The good part is that he sounds like a real pro, and he will know what to do when he gets there.

I can't say I'm terribly disappointed about the idea of you going tissue, something that was important to me as well. However, I have only one reoperation to face at my age. I did feel it was important for you to fully explore your options and understand the slightly more exotic factors that go into the decision when the aorta is also involved.

I am interested to hear about your surgeon's theory regarding bicuspids and long-term Coumadin (warfarin) anticoagulation therapy. Maybe sometime later: you have more than enough to think about.

Can the bovine tissue valve go twenty years? Theoretically. The problem again is age, where younger people go through tissue valves faster than us old fogies. There aren't that many who have had these valves (actually, their immediate - and untreated - predecessors) at all for twenty years, so there may have been some hyperbole in his statement. Edwards claims a 90% retention at 18 years rate, 80% at twenty. But the large majority of the patients in those studies, and probably most of your surgeon's patients, are twice as old as you, so the age bias is built in to those figures.

The new anticalcification treatments, which have been out for less than two years, should help these valves last longer, but it is not very likely that you'll get a whole twenty out of it this time around. However, I believe you would not have to face the "five-years-and-out" issue anymore, either.

I am impressed that you have adapted yourself to do this exploration as rapidly and well as you have. It is a difficult series of discoveries to have to assimilate about yourself, and is very emotionally draining.

I wish you well,

 

[Superbob]

Just to echo Bob H (from another Bob H)--- that is a very honest analysis from one who (like me) favors the tissue valves personally. But we old codgers are likelier to get a longer run with a tissue than a younger guy. There are a lot of factors to weigh in tissue versus mechanical and sounds like you have really delved into detail. But ultimately all any of us can do is make the best choice (which may be part guess) for us, and then don't look back.

And unfortunately there are no guarantees for any of us.

 

[PJmomrunner]

Hi Cory:

First of all, I am so relieved that you consulted Dr. Raissi.

I am 8 years older than you and have a regurgitant BAV with an aortic aneurysm about .5cm smaller than yours. It is not my time yet, in fact I've more or less left the waiting room altogether.... But, I think I can closely identify with what you're going through and would like to share some info I think you might find pertinent.

I have consulted with G. Michael Deeb at the U of Michigan, who has been doing only aortas and aortic valves for the last 10 years. He told me that when my time does come he will replace my valve and entire ascending aorta through the innominate and left common carotid arteries. I was told that during embryonic development this entire segment of aortic tissue develops at the same time from the same "brachial arch" (?not sure if this was the exact term used?). I specifically asked if the adjacent heart tissue or the tissue of the innominate or LCC was also "bad" and was told no--only this specific stretch of histology involving the BAV and ascending aorta to halfway through the arch--past the second artery, because, embryogenically, it comes from the same "bud," if you will. Perhaps this is why Dr. Raissi plans to replace your ascending and "hemi" arch?

I mention this because I wonder: why "remodel" the root? That tissue is of the same histology that compromises the tissue being removed. Will the "remodeled" root last 20 years? Has root remodeling in BAV's associated with ascending aneurysms been followed for that long? I also wonder, if you are going to hang on to that "remodeled" root, will it be reinforced somehow (perhaps you already know the answer to this--maybe that's what remodeled means???)?

Anyway, I hope my two cents-worth of input doesn't only muddy the waters. Good luck, Cory.

P. J.

 

[coryp]

Just to chime in a few more notes, in a choice between the excellent porcine Mosaic (which I have) and the also excellent bovine Edwards Perimount Magna (or another from that series), based on the desire for the longer-lasting one, I would also choose the bovine, as your surgeon has suggested.

I am glad that you have had an opportunity to discuss your prognosis and the most appropriate approaches to your personal situation with an interested and expert surgeon. After all, no one standing on the sidelines can know exactly what your circumstances are, and it's tough to pitch worthwhile advice to a somewhat complex case from the bench. There are some things, I'm sure your surgeon told you, that even he won't be completely certain of until he is actually there firsthand. The good part is that he sounds like a real pro, and he will know what to do when he gets there.

I can't say I'm terribly disappointed about the idea of you going tissue, something that was important to me as well. However, I have only one reoperation to face at my age. I did feel it was important for you to fully explore your options and understand the slightly more exotic factors that go into the decision when the aorta is also involved.

I am interested to hear about your surgeon's theory regarding bicuspids and long-term Coumadin (warfarin) anticoagulation therapy. Maybe sometime later: you have more than enough to think about.

Can the bovine tissue valve go twenty years? Theoretically. The problem again is age, where younger people go through tissue valves faster than us old fogies. There aren't that many who have had these valves (actually, their immediate - and untreated - predecessors) at all for twenty years, so there may have been some hyperbole in his statement. Edwards claims a 90% retention at 18 years rate, 80% at twenty. But the large majority of the patients in those studies, and probably most of your surgeon's patients, are twice as old as you, so the age bias is built in to those figures.

The new anticalcification treatments, which have been out for less than two years, should help these valves last longer, but it is not very likely that you'll get a whole twenty out of it this time around. However, I believe you would not have to face the "five-years-and-out" issue anymore, either.

I am impressed that you have adapted yourself to do this exploration as rapidly and well as you have. It is a difficult series of discoveries to have to assimilate about yourself, and is very emotionally draining.

I wish you well,

Bob,

Sorry for my lack of patience and thank you for the reply.

As I get a more detailed view of the anti-coag for Bicuspids I will create a new thread for discussion.

In all honesty I somehow do beleive that I will not get 20 years from the Bovine but going in I thought that If I could get 15 out of the first then the possible technology upside would be great where as I maybe able to do my 2nd (and hopefully final at around your age 50) through CATH. This is a real weighted bet on my side but I think it may be worth it in the long run (being able to forego the meds) based on my readings of what is on the horizon (they suggest that valve replacement will be possible and common in 6-8years done by cath). I also agree that with the new Anti CALC treatments, that will significantly improve as time goes by may help to buy me a few extra years. Dr. Raissi is of the belief that If I can get 15 from the first (than my body has reacted well to it) I should pretty much be able to get 20-25 from the 2nd.

The one thing that is now troubling me is a comment made below by PJ regarding the root remodel VS replacement. As I understood it the ROOT REMODEL technique is used to remodel the aortic root while preserving some of the original root tissue. The entire non-coronary sinus of Valsalva is resected, and the segment of aorta between the left and right coronary arteries may also be removed depending on the coronary artery anatomy. A key difference from other procedures is that the coronary arteries are not disturbed and remain attached to native aortic tissue. This is done so that the tissue remains strong as Dr Raissi suggests once coronary have to reimplanted they never sit the same way hence causing weakness.

That is my 2 cents on it, just trying to provide a valid argument that I beleive in so that I can feel confident moving into the surgery, but that is still in the distant future. The more discussion and feedback the better I feel as it helps me to ask intelligent questions.

Thank you for the replies and PLEASE KEEP THEM COMING!!

 

[coryp]

Hi Cory:

First of all, I am so relieved that you consulted Dr. Raissi.

I am 8 years older than you and have a regurgitant BAV with an aortic aneurysm about .5cm smaller than yours. It is not my time yet, in fact I've more or less left the waiting room altogether.... But, I think I can closely identify with what you're going through and would like to share some info I think you might find pertinent.

I have consulted with G. Michael Deeb at the U of Michigan, who has been doing only aortas and aortic valves for the last 10 years. He told me that when my time does come he will replace my valve and entire ascending aorta through the innominate and left common carotid arteries. I was told that during embryonic development this entire segment of aortic tissue develops at the same time from the same "brachial arch" (?not sure if this was the exact term used?). I specifically asked if the adjacent heart tissue or the tissue of the innominate or LCC was also "bad" and was told no--only this specific stretch of histology involving the BAV and ascending aorta to halfway through the arch--past the second artery, because, embryogenically, it comes from the same "bud," if you will. Perhaps this is why Dr. Raissi plans to replace your ascending and "hemi" arch?

I mention this because I wonder: why "remodel" the root? That tissue is of the same histology that compromises the tissue being removed. Will the "remodeled" root last 20 years? Has root remodeling in BAV's associated with ascending aneurysms been followed for that long? I also wonder, if you are going to hang on to that "remodeled" root, will it be reinforced somehow (perhaps you already know the answer to this--maybe that's what remodeled means???)?

Anyway, I hope my two cents-worth of input doesn't only muddy the waters. Good luck, Cory.

P. J.

Pj,

Great questions that I wish I had all the answers to. Please see my last post above and respond, I will do some research into my notes and then try to answer your questions.

 

[brd]

Longevity of tissue valves

Longevity of tissue valves

Just some things that may help clarify...

As I interpret my research, the top-rated porcine valve is a stented valve, the Medtronics Mosaic. The top-rated bovine valve, the Carpentier-Edwards Perimount Magna, is also stented. Both are specially treated to avoid early calcification. Either should outlast the top-rated, but untreated Toronto stentless in most situations. I would agree with the surgeon, and go with either the porcine or the bovine stented valve, if I were to go with a xenograft.

However, at your young age, it would be unlikely that you would get ten years out of a xenograft, even a treated one.

A mechanical would likely last 25-30 years before requiring replacement. It won't wear out, but your body may coat it, put scar tissue around it, or have damage to where it is mounted, causing it to have to be replaced by that time. That long time between surgeries can be highly important, particularly if you have tissue problems (you do). One of the problems that sometimes accompanies tissue problems like extensive aneurisms is that the tissue the valve is sewn into can become grainy and weak (myxomatous). Sewing repeated valves into it can potentially damage it beyond usefulness.

The Ross Procedure is indeed done on adults, and has been successful in people into their seventies, although it is believed to have a greater success rate in people under fifty. It should only be done by someone with a good track record, who can properly gauge if the tissues are appropriate for the job, and is willing to abort to a backup plan if they aren't..

However, it may not be the best solution for someone with the tissue problems you face.

I am a proponent of tissue valves, but I would seriously consider a mechanical valve in your position. The ticking really shouldn't be an issue.

Coumadin is not nothing, but it is not the end of the world, either. There are many here who deal with it very successfully, and who don't feel that it interferes with their quality of life at all.

I believe you should discuss with your cardiologist what the expected path of your valve and aneurism problems is for the future, and make your decisions with those expectations in mind.

Best wishes,

Tobagotwo - I am new here and facing AVR within the next 6-12 mos. I'm thinking I will go to the Mayo Clinic even though I live right near Boston and could go to MGH. You have mentioned a couple of times that tissue valves don't last as long in younger people. Do you know what affects that? Do you know if increased exercise - say running post tissue valve - causes it to wear out faster? Thanks! I've read most of your posts. brd

 

[Mary]

Cory and Pj,
I think the answer is in Burair's (Papahappystar) response two days ago in this thread.
BVD,
The metabolic rate is higher in younger people.

 

[karlaosh]

Can someone explain precisely what a hemiarch procedure is? Also, what a hemiarch procedure is versus what P.J. talked about above (replacing the entire ascending aorta through the inominate and left common carotid arteries)?

How common are these procedures for bicuspids? Have others on VR.com had them?

My pre-surgery consult is Tuesday with surgery to follow Wednesday. I'm in the same boat as you guys, with an ascending aneurysm and bicuspid aortic valve, and I'm making a list of questions for my surgeon.

So I want to be sure to ask him about these things...if I can understand them!

 

[tobagotwo]

There are theories about why younger people calcify the valves sooner (calcification is the problem). The valves don't usually waer out physically much faster.

Exercise doesn't seem to be a trigger. Pregnancy seems to hasten their demise, though.

I don't disagree with Burair's assessment that younger people have faster metabolisms. I think that's causative. I don't think it explains just what the mechanism is, though.

The calcification seems to be related to the body determining that the valve is not healthy tissue (accurate, but we wish the body would ignore that). The body calcifies things to coat and "protect" them from damage, based on some chemical cue it receives from the epithelium. Unfortunately, in a valve that requires flexibility, that's not such a great thing.

If they knew more, they might be able to do an even better job of keeping the valves from mineralizing. As it is, the various processes attempt to do away with chemicals on the valve, and in the valve's material, that attract or combine with calcium.

Please understand that it's not known for sure that these valves with their new treatments won't last their full expected lifetimes in young people, but the odds are stacked against it. Time will tell us how well they did. Hopefuly they will last significantly longer than they used to, though: common sense says they should.

If I were to guess at their potential longevity in a 35-year-old, it would be in a range of 8-16 years, averaging about 12. But I truly don't know. No one does, yet. I had my AVR at age 51, and I'm hoping for 18 years out of mine. It is a newer one, and has one of the anticalcification treatments. I'll let you know how it does.

They're great while they last, though.

Best wishes,