Aortic valve repair

[Stephans]

Hello,

This is my first post on this forum, but I have been reading it since a few months, when I found out I need a valve replacement for my leaking bicuspid aortic one (37 yo). Even though it was not easy at first, I became acustomed with the idea that I will need to go through this surgery, in part owing to the experiences shared by people on this site, to wich I am grateful.
The problem is that the surgeon is proposing to do an aortic valve repair, wich he says will improve my quality of life, in part because I will not need anticoagulation therapy (due to my age I will neet do go with a mechanical valve). I do not find the anticoagulation to be such a great setback, and I am an organized person so I am confident that I will be able to keep my INR levels within limits. On the other side, I am terrified at the idea of a repeat surgery, especially in the near future. At this moment the valve repair option does not seem better than going with a biological valve.
Please tell me if you have any information regarding the long term durability of the valve repair procedure, or other advantages it may have againts a mechanical valve. Also, if you have faced the choice please tell me wich way did you go and why?

Thank you for your help!

 

[Tom C]

Hi Stephans,
I had my aortic valve repaired about 4 years ago by Dr. Hartzell Schaff at the Mayo Clinic. He is pretty well known for recommending mechanical valves for almost everyone at every age, but for me he said a valve repair was the best option. He said I should expect at least 12 years from the repair - maybe more. However, a cardiologist at Mayo suggested some of the new techniques used in aortic repair could allow the repair to be permanent. He was really excited about that possibility - but Dr. Schaff certainly didn't want us getting our hopes up that high.

I decided to swing for the fences and go for the repair and all I can say is so far so good. My local cardiologist has me on a two year schedule, because other than still having a bicuspid valve, my echo shows nothing of concern. All my measurements and numbers are well within normal values. At this point I don't know what would make the valve go bad again - I guess age.

I'm sure as you know, repairs can only be done on valves with regurgitation and no stenosis. That means very few patients are eligible and most surgeons don't learn the complicated repair procedure - because it would rarely be used and it requires a lot of skill. It's much easier to pop in a new valve than it is to place sutures in leaflets that need to move 100,000 times a day as soon as the heart starts up again. So my recommendation is to only have a repair done at a larger center like Mayo or Cleveland Clinic, one that performs a relatively high number of repairs.

I believe mitral valve repair has long used a ring placed around the base of the valve. I was told I was one of the first patients to have a ring placed around the base of my aortic valve, which I believe helps maintain the shape and performance of the valve over time. That and a few other advancements make it difficult to compare my repair with those done five or ten years prior. It's the same thing that makes newer tissue valve performance difficult to compare. It's not apples to apples - or so we're told.

At the time of my surgery I was leaning toward a tissue valve anyway. My wife is an Internist and she had me pretty concerned about anticoagulation. I must say, though, that because of this forum I no longer fear Coumadin. I would now have a mechanical valve higher on my list and if somehow my repair fails in the next ten years, I will likely get a mechanical. Your reasoning is sound, particularly for your age. You would have to accept the possibility of another operation if you went with the repair - and it's quite reasonable not to want a second. I don't want a second operation either, but I'll have no regrets if I do. The repair was a good choice for me at the time - and time will tell.

Good luck,
Tom C

 

[EasterRat]

Hey there,

I am 41 and have the same decision. My surgeon said he wants a CT scan first, because it will determine which repair procedure he will choose. I have anxiety about the potential for 2 surgeries as well, but to my mind, repairing the valve seems the better option if available. And who knows what advancement in techniques or drugs will happen while your repaired valve is in service! I'm not going to Mayo or Cleveland cause I'm Canadian and I don't have 1/2 a Mil for some surgery tourism...my surgeon seemed confident he could pull er off...ha.

 

[kloned]

Stephans did they rule out any Aneurysms? I had a heart doctor for 25 years because of my BAV and he never once looked at my Aorta. I went for a routine checkup somewhere else and they found my Aneurysm. It was growing at least 10 years they told me. I am 46 now. 50% of every single BAV will get a Aneurysm in their lifetime. Its a fact. They dont tell you this or educate you when your young the benefits of staying active and keeping blood pressure under control.

 

[cldlhd]

I had my aortic valve repaired last year at the age of 45. I had a lot of similar thoughts to what you're having. I thought about getting a mechanical valve to " just get it over with" and my surgeon wanted to go the repair route. He agreed with my choice of mechanical as a backup but said my repaired valve would be my best option in his opinion. As was stated here previously you basically had to be stenosis free for repair to be a viable option. I was also lucky enough to have very little leakage , the cause for my surgery was my ascending aneurysm. I was also fortunate to be close to a high volume center- The Hospital at the University of Pennsylvania- and to have a surgeon considered one of the best in terms of repair in the U.S. I have no leakage as of my last follow up so I'm pretty confident on that end. As for stenosis who knows what the future holds and I surely hope that's not tempting fate or some kind of foreshadowing. I'm no expert but any questions I can possibly help with I'll do my best.

 

[AZ Don]

I had my aortic valve spared during a surgery to address the aneurysms in my aortic root and ascending aorta. The valve was well functioning so it wasn't repaired but the situation is similar. I was given a 50% chance of it ultimately failing and since it started leaking after the surgery those odds have gone up. I think the odds for long term success with a valve repair are even better - if you have a surgeon skilled in repairs. I was told that my valve was better than any replacement, at least at the time. Even if I ultimately need a valve replacement, technologies are improving and perhaps I will have better options. It's often a close call between mechanical vs. tissue valve, yet repair has advantages on both: no coumadin (or at least very unlikely) which is guaranteed with a mechanical valve and a chance for no future surgery which is guaranteed with a tissue valve (if you live at least 20 more years). There is no wrong choice, you have to do what is best for you.

 

[cldlhd]

I assume with repair a lot has to do with the condition of the valve in the first place. The amount of leakage , leaflet size etc...I was told by the surgeon that judging by the tests he thought my valve was easily repairable . That helped sway me , if he said it would be a challenge then I might have went mechanical. I wasn't interested in a situation where he felt good about himself for repairing a valve that was a tough case only to be back in surgery a couple years later. After the surgery he told my wife and mother that " it went perfect and he'll never have to see me again". Obviously he can't guarantee that but I appreciate the enthusiasm.
To sum it up I'm happy with my choice but it is a personal one and there are a lot of variables within each individual case.

 

[Tom C]

Easter Rat, you should be able to have a great repair done in Canada. When I was doing my research I found that surgeons in Toronto were among the leaders in continuing to develop aortic valve repair. That likely carries over into the entire Canadian system, perhaps in part because it makes economic sense. With a repair, no one has to buy a shiny new valve of any type.

I'll defend the Mayo a little bit here. My entire surgery cost less than $60,000, which seems to be on the low end for a heart valve operation. The bill had $800 down for suture cost, but my valve was free.

 

[cldlhd]

I'm not sure it would apply to all of Canada. I believe the surgeon who pioneered the repair I had, Dr. Tirone David, was based in Toronto. As for economic sense maybe but a repair usually takes longer and we know what they say about time.

 

[Stephans]

Thank you all for your help. I will keep you updated with the decision I take. My valve is leaking, no stenosis, and I have a enlargement of the ascending aorta. I do not live in America, so no Mayo clinic for me either, but the surgeon is verry experienced with both repair and replacement and has a verry good track record.

 

[Stephans]

I also forgot to mention that I am more inclined to the mechanical valve option because the surgery will be a right thoracotomy for a replacement, as oposed to a full sternotomy in the case of the repair. If the two would have been made through a similar approach, I think I might have chosen the repair more easily. After some thaught a second surgery does not seem so bad, as the rates of complications are also low for redo surgery. I guess given enough time, I will get used to any crazy idea.

 

[pellicle]

I also forgot to mention that I am more inclined to the mechanical valve option because the surgery will be a right thoracotomy for a replacement, as oposed to a full sternotomy in the case of the repair. If the two would have been made through a similar approach, I think I might have chosen the repair more easily.

I think you have reached a decision based on completely the wrong reason.

 

[Stephans]

I think you have reached a decision based on completely the wrong reason.

Thank you pellicle for your message. Maybe I did not express myself right, I have not yet reached a decision. I was just trying to point an advantage of one of my options (an advantage due to the reduced time I need to be away from my family and work). If the long-term outcomes are similar, the only difference being the increased risks due to anticoagulation therapy for the mechanical vs the risk of reoperation for the repair, I might be inclined to choose the replacement. The problem is that I do not find enough studies comparing the long term outcomes of the replacement using a modern mechanical prosthesis vs the repair procedure. I agree that compared to a bioprosthesis the repair procedure is preferable, I am not so sure how it compares to a mechanical.

 

[pellicle]

Hi Stephans

Maybe I did not express myself right, I have not yet reached a decision. I was just trying to point an advantage of one of my options (an advantage due to the reduced time I need to be away from my family and work). If the long-term outcomes are similar, the only difference being the increased risks due to anticoagulation therapy for the mechanical vs the risk of reoperation for the repair, I might be inclined to choose the replacement. The problem is that I do not find enough studies comparing the long term outcomes of the replacement using a modern mechanical prosthesis vs the repair procedure. I agree that compared to a bioprosthesis the repair procedure is preferable, I am not so sure how it compares to a mechanical.

The problem with text forums is of course that communication has errors ... its compounded by speaking to strangers who may have entirely different communication styles

I was more focusing on the points of your post where you seemed to weigh the operation styles rather than the outcomes. You wrote:

t I am more inclined to the mechanical valve option because the surgery will be a right thoracotomy for a replacement, as oposed to a full sternotomy i

I feel that any decision based on what style surgery as mentioned above is misguided. But in your post now you seem to be discussing more the traditional problems of tissue vs mechanical. I think that focusing on outcomes is the best approach (and you should be that engineer that you are, not a worried patient when doing the thinking).

Many of the issues with redo surgeries are masked by the simplistic analysis of "live or die" that is undertaken on the surgical outcomes of redo operations. There is precious little other information (like frequency of damage to the AV Node resulting in pacemaker, infections of the sternum and length of complications and post surgical management ...). Thus the A vs B of (tissue + reop) vs (mechanical with AC therapy) is often muddied in just a morbidity analysis. There are many other issues (not the least of which is that on a tissue valve you might also need AC therapy anyway).

I would answer your last question with this: a mechanical valve gives you the greatest likelihood of never needing a repeat surgery. Many repairs can be good for 10 ~ 15 years, and (depending on the age of the patient) for life. Some younger patients may have a successful repair and be good for life too. Much will depend on the state of the tissue. If there is any sign of calcification then I would not be confident that a repair would last longer than a tissue prosthesis.

I'm Australian and so I too don't have "the mayo" on my list either

Without knowing if I'm answering questions or providing confusion I'll give you some quick background:
I'm 52, I've had 3 Open Heart surgeries ... all were the "full sternotomy". First was a "repair" when I was about 9, second was a homograft when I was about 28 (1992) and most recent was a mechanical when I was 48 (2011)

If you are 37 then having a repair may be the best option IF IT WORKS you can get many years on that. At your age I would totally not recommend you have a tissue prosthetic but a mechanical.

You are correct that there are no long term studies comparing valves. Rather than repeat what I've written before I'll point you to my blog (http://cjeastwd.blogspot.com/2014/01...r-choices.html) and suggest you read that. There is a presentation which I dissect in that post, if you wish it please let me know and I can try to send you a copy (the May has taken it down, probably because its an SWF and that's increasingly not a supported medial).

You must be very critical when reading about evidence on all aspects. Put your "rigorous analysis" hat on and read not just abstracts but methods and details, especially when reading about warfarin and the risks of that. Most of that is data coming from ALL WARFARIN PATIENTS : who are in the main elderly, frail, have many other co-morbidities including (but not limited to) a propensity for strokes (usually undiagnosed reasons).

Modern data on warfarin suggests that the risks of being on warfarin are quite similar to the age related risks for bleeds or thrmobosis of the general population.

I have also quite a lot on my blog on self management of INR and dose ... I have indeed been self managing for some years now.

http://cjeastwd.blogspot.com/2014/09...ng-my-inr.html
http://cjeastwd.blogspot.com/2015/10...r-example.html
http://cjeastwd.blogspot.com/2014/05...ocks-dose.html

Let me know if you wish more information or if you wish to Skype and have a chat ... I'm in Finland at the moment so GMT+2

Best Wishes

 

[cldlhd]

I agree that deciding largely due to type of surgery would be a mistake. It's difficult to say a repair is likely to last x number of years like you might be able to more accurately with a tissue replacement as the quality of repaired valves is likely to vary more. I've heard of repairs failing relatively quickly .Also there are BAV's that last a lifetime. The main reason for my surgery was my aneurysm the trace leakage was fixed while he was in there. At 45 there was no calcification and the surgeon put it in his top 5 so maybe I'll get lucky. How durable a repair you would have is obviously beyond what any of us can predict. My surgeon said that even though my valve was likely to be easily repairable based on scans he wouldn't know if the leaflets would accept a stitch until he was in there. Also my bav is a somewhat uncommon one . I have what they call a Sievers 0 I believe, meaning I have 2 leaflets of pretty much equal size with no sign of even an attempt at 3. IF I need a reop for the valve my personal feeling is stenosis is more likely to be the cause rather than leakage.

 

[cldlhd]

https://www.ncbi.nlm.nih.gov/pubmed/25956338
http://www.uphs.upenn.edu/surgery/A...d_Aortic_Valve_Anatomy_by_Vallabhajosyula.pdf
In case anyone is interested in descriptions of different types of BAV .

 

[pellicle]

Stephans ... I forgot to address this point:

I was just trying to point an advantage of one of my options (an advantage due to the reduced time I need to be away from my family and work).

I have not read enough of the validity of significantly reduced times in recovery between the two groups (so called mini sternectomy and regular), but even if there are 2 or 3 weeks it is not sufficient in my view to drive the choice of the best long term outcome (something you seem to also agree with)

If the long-term outcomes are similar, the only difference being the increased risks due to anticoagulation therapy for the mechanical vs the risk of reoperation for the repair, I might be inclined to choose....

which I would coincide with ... an analogy if I may: When I go hiking I know what the minimum time to do my trip will be (lets say its 5 hours), I will always factor in enough food so that I can be delayed a full day (its not much extra to carry really) and if there is the slightest chance of bad weather, a shell coat too.

It was not so long ago that this was a death sentence, so that our generation can even get a solution which will allow us a good chance of leading a "normal life" (I have no idea what that would be) a few weeks either way is a small inconvenience.

Also, some reading
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3134935/

You may note an absence of discussion about scar tissue and adhesion. Which are the real challenge for redo-surgery. I have not seen any evidence that ninimal invasive makes redo surgery any less problematic or challenging (or dangerous)

Best Wishes

 

[cldlhd]

You're probably thinking about now that it's easy for us to say you shouldn't factor in what style of surgery ( mini or full ) being on this side of the surgery. There's probably a certain amount of truth in that but time flies and before you know it you'll be all healed up. In 6 weeks I was driving and as far as the sternotomy goes I didn't have any issues although obviously that's not the case for everyone though. The only issue I had post surgery is I got an infection where a line went in my neck but I got my arse in to the doctor and got some heavy duty antibiotics and it cleared up.

 

[Stephans]

Hello,

Thank you all for your answers and information, I really appreciate it.

After a lot of thinking and reading, I think a mechanical valve is the best choice for me. Valve repair is a great thing, and the fact that they can do that with good results is great also, more so as the techniques are evolving and it seems that the latest iterations yield excellent results on the long term, but I think a mechanical valve is more suited for me. This is a very personal choice and I think being OK with what you have is very important

The type of surgery did not influenced me in making my decision. When seeing the surgeon for the first time I was prepared to ask for a mechanical, not even knowing a minimally invasive surgery is possible (I also think the name is misleading, there is nothing about this surgery that can be called minimally invasive). I would appreciate the reduced hospital stay and recovery time, but as pointed earlier, two or three extra weeks will seem like nothing on the long run. I am also aware that both types have a lot of associated complications. The other advertised benefit of better cosmetics holds no importance to me.

The things that influenced most my decision were:

1. The benefit of increased quality of life for a repair, because of the lack of anticoagulation may not be true for me. The stress of knowing I will need a reoperation will affect my quality of life more than being on AC. Of course I may need another operation later anyway, due to complications or an aneurysm or something else but if I may minimize this risk I will. The activities I enjoy, like walking, hiking, swimming and riding my bicycle can all be practiced while on AC, as many have shown on this forum. This seems to be agreed to by the study found at:

https://bmccardiovascdisord.biomedce...872-016-0236-0
from which I quote:

Hypothetically, better quality of life should result from the absence of anticoagulation and related life-style limitations, awareness of permanent risk of thromboembolic and bleeding complications, absence of blood checking and vigilance against prosthetic infection [15]. On the other hand, the fear of a potential reoperation may affect negatively the quality of life after valve-sparing aortic surgery.

2. Looking at the study from Cleveland Clinic below, It seems that after valve repair, at 6 years post-op, I have a 50% chance of having an aortic regurgitation of more than 2, which will bring me right where I started. The main reason I am having this surgery is the severe regurgitation and increased LV volume. It also seems that having a severe regurgitation pre-op is a known risk factor for this to happen.
http://www.annalsthoracicsurgery.org...ext?mobileUi=1

3. Most of the studies I found promoting the repair procedure compare the outcomes of the repair with a biological replacement, to which I am sure it is superior. I think a comparison with a modern bi-leaflet valve would be more relevant for me, even though I agree it would be difficult to do.

Other factors influenced my decision, such as an increased difficulty of the surgery for replacement after a repair. The possibility of having a replacement later if needed through TAVR, as advertised by my surgeon, seems pretty low for me also, as it may take a long time for these to become the standard, and due to the big cost it might not be covered by the assurance if alternatives exist.

Sorry for the long post, and thank you again for your input.

As I stated before, This is a very personal choice and surely others will find more benefits in the repair procedure which is great.

Best regards!

 

[pellicle]

...
Thank you all for your answers and information, I really appreciate it.

you are welcome ...

the point you raised:

Of course I may need another operation later anyway, due to complications or an aneurysm or something else...

would also in all likelihood drive a redo for any valve choice ... and so is neither a success nor a failure. Have you asked about possibility of aneurysm to your surgeon?

Sorry for the long post, and thank you again for your input.

... This is a very personal choice and surely others will find more benefits in the repair procedure which is great.

Actually I think that there are many folks who hungrily read the longer posts such as you have made. I hope that it helps others to find comfort in their own decisions.

Best Wishes