Is Bicuspid Aortic Valve Repair at Cleveland Clinic the right choice?

[grapesota]

Hi Everyone this is my first post...

I'm 31 and to my shock it has recently been discovered that I have an Asymptomatic Severely Regurgitating Bicuspid Aortic Valve. Needless to say I have been on the phone a lot lately and I've been able to get the recommendations of a number of top surgeons, but unfortunately I have been given many differing opinions as to what approach I should take. Im leaning towards a repair at Cleveland Clinic who feels I am a candidate for the procedure. I like the idea of not having to take Anti Coagulants for the rest of my life. Despite having a scar it appears that a successful repair offers the best chance of getting the life back that I had 6 months ago before I ever knew I had anything wrong. But other surgeons I have spoken with (New York Presbyterian and Swedish in Seattle, WA) have advised me to avoid a repair because of its relatively poor success rates and high rate of failure in that first year post-op. Cleveland claims that they will not know if the repair will hold until the surgeon has my valve in his hands at which point there is a 70% chance it can be repaired and a 30% chance that it will be deemed unrepairable and a St. Jude valve would typically be implanted. They also claim that with a successful repair there is an 90% chance it would last 10 years and 80% chance it would last 20+ years. Has anyone gotten a repair at the Cleveland Clinic? Is it possible that they are having better results with repair than other hospitals who are not supporting the procedure? My local Cardiologist referred to repairs as "on the experimental fringe of medicine". Is it possible that Cleveland is performing a failure prone procedure while other hospitals reject it as an option?

Thanks in advance for your input...

 

[Stevecro]

Hi grapesota, Im near your age and will be having surgery in the very near future with a BAV. I am in Australia and I talked to my cardio about 'repair' and he chuckled and said that I would have a very hard time finding a surgeon here that would be willing to do it. He said it's not a viable option as its pretty much experimental at this stage and that its success rate isn't very good. I am not telling you what to choose, but you need to do a lot more research into valve repair and how successful it is, before choosing that option.

 

[Agian]

They say aortic valve repair is only appropriate for regurgitation and not stenosis. If I had regurg I would certainly do some research into repair. Apparently, in some cases the cusps are fine, but loose. They tighten the ring around the valves to prevent back flow. I wouldn't just take the word of one cardiologist. Just my two cents.

 

[T in YVR]

I'm not sure whether other hospitals reject it due to being "on an experimental fringe" or failure prone. But I can tell you that after my research into it, it was clear that it is a much more complex procedure than replacement, and you want to have a surgeon who is highly skilled in this. A lot of surgeons and not trained in this and as such, it's not offered as widely as replacements. But Cleveland Clinic is pretty highly regarded...

 

[scott.eitman]

I cannot speak directly to your question. Generally speaking I do not believe the surgeons at the CCF to be liars. Meaning, I really doubt they will give percentages that are not based in fact from published clinical results. Consider asking to see those results.

The surgeons at the CCF are really good (great in fact). I am amazed at the stories I have heard over the years. I really doubt they would tell you they will repair it, if in fact there is a low percentage rate of success. Failure does not look good on anyone's record.

I do recommend that you do not set your mind on only a repair. Think in terms of priorities. For my 1st, my priority was repair with homograft as a backup plan and mechanical as a final option. I got a Homograft. Sometimes, when the surgeon gets inside, the options get much clearing.

 

[AZ Don]

Welcome to the forum. Most of us were shocked to receive the news that we had a heart issue as well.

I was surprised that valve repair was considered "fringe" but in checking the "2014 AHA/ACC Guideline for the Management of Patients With Valvular Heart Disease", it states:

Despite advances in primary aortic valve repair, especially in young patients with bicuspid aortic valves, the experience at a few specialized centers has not yet been replicated at the general community level, and durability of aortic valve repair remains a major concern. Performance of aortic valve repair should be concentrated in those centers with proven expertise in the procedure.

Full document here: http://content.onlinejacc.org/article.aspx?articleid=1838843

For heart surgery I would always recommend finding a surgeon with significant experience in the procedure that you require. Based on above I think that is especially true for valve repair. I think it is a matter that hospitals like the Cleveland Clinic are simply ahead of most others in this area and I think the chance for a successful repair are therefore much higher at such a hospital.

The net is that if you get the valve repaired there is a fair chance that you may someday have to have another surgery, but in the meantime you would not likely need anti-coagulants. If you get a mechanical valve there is a low risk of another surgery but you will be on anti-coagulants for life - as many on this site are.

 

[river-wear]

I went for the repair four weeks ago, and flew to Philadelphia for Dr. Bavaria, who has done hundreds of them. He has had two re-dos and one was endocarditis and doesn't really count. He is part of the group on the "fringe" with the latest techniques. I'm quite scared of another future surgery, but if this one holds I'll have the best of all outcomes with no lifelong medication.

My surgeon said there was a major change about 10 years ago in how repairs are done. He re-did some of CCF's early work. I'm sure they are using the latest now too. Did they tell you who is their expert at repair? When I asked, they wouldn't tell me. I wanted someone I knew had done a lot and that's why I traveled so far.

Best wishes for your decision. It is a tough choice.

 

[VegasBAV]

My Cleveland clinic doctor told me there would be a small chance of a repair but I would probably need a replacement. I got a replacement. Discuss your preferences for a replacement valve with them and then rest comfortably that they are going to do what's best for you. I wouldn't be demanding a replacement if they think they can repair it, they know what's best.

 

[river-wear]

FWIW, here's an explanation of the newer methods of repairs. It's a bit long and technical, but I found it interesting.
http://webcast.aats.org/2013/files/Sunday/20130505_auditorium_1330_13.30 Joseph E. Bavaria.pdf

Caution for the squeamish: there are some "guts" pictures.

 

[joel1947]

I think choice of surgeon is more important than choice of hospital.

I think choice of surgeon is more important than choice of hospital.

I am 67 and scheduled for repair of severely regurgitating (4+) aortic valve and a CABG of my LAD. I had a heart murmur as long as I can remember and when I had a robotic prostatectomy in 2008 I was advised to have more frequent cardiac followups on my leaky valve, so an echo every 6 months and a stress EKG every 9 months or so. I am quite active and was told that I would know when it was time to consider surgery. Bu the way, from an early echo i was diagnosed with BAV, but that turned out not to be the case after a later echo showed the mercedes benz logo. And no one suspected the 80% LAD stenosis. If is was BAV I would have needed a replacement, but am hoping for a repair now.

Finally in May I started getting fatigued. On a 5 mile run I would fade around 3 miles, and even on an elliptical machine after 45 minutes I was dead. But I could still ride my bike or spin ok. Anyway that helped me decide it was time to find a surgeon.

There are a number of hospitals with good reputations in my area (Boston), so I started to network and find the best surgeon. My cardiologist had a recommendation and after checking around and meetings I chose him. I had a cath and another echo, and that suggested I have a TEE and CAT, and now am waiting for my surgical date of August 19. (The downside of picking a highly sought after surgeon during vacation season).

So I have not been through OHS, but am confident I am making the best decisions (and by the way, any decisions you make prior to surgery may well be over-ridden by the surgeon when he actually has you open)

My two thoughts.

1. Find the best surgeon for you, the hospital choice is less important. If you love sports and activity you want a surgeon who also is very active and understands that mindset. Some people would risk the likelihood of future surgery to maintain a more active lifestyle, some would not. Up to you. But do spend time with the surgeon and build trust.

2. Statistics mean little (in my opinion) the way they are used in medicine. There is no way of knowing if you are in the 70% or 30%. Often the stats come from people with very different conditions and possibly different age and different levels of fitness and different medical histories. They determine the outcome of a wide range of people, not a lot of people just like you.

 

[cldlhd]

I would imagine a lot has to do with the specifics of your valve and the surgeon. I also am using Dr Bavaria as my surgeon-although as scheduling a visit with him is already difficult I hope all the promotion out here doesn't make it worse,lol- and I can back up what river-wear said. He told me he only had 2 reops in 10nyrs and the one was because the guy didn't take his anti-biotics. He told me that my valve would be easily repairable but when I read about failed repairs and multiple ops I get a little nervous but he is an expert in this area. I guess I feel like even though with a mechanical I would feel like I could work out or do what I want and not worry about the valve but with a repair it may be in the back of my head " Am I damaging the valve if I overdue it?" I'm probably going to go the repair route.

 

[pellicle]

Hi

2. Statistics mean little (in my opinion) the way they are used in medicine. There is no way of knowing if you are in the 70% or 30%. Often the stats come from people with very different conditions and possibly different age and different levels of fitness and different medical histories. They determine the outcome of a wide range of people, not a lot of people just like you.

I just wanted to reiterate this point and underscore the importance of individual parameters. Prior fitness is your best friend.

Also surgery is not like science, in that there is no easy way to test theory or hypothesis, because the parameters vary too much (unlike chemical composition or other simple physical properties). Surgeons each push their own views whether it be ross, repair, replacement with tissue or replacement with mechanical.

With an increase in cardiac procedures being done by Catheter these days, surgeons (at least their societies) made a choice some time ago to set them selves apart from these procedures. This has resulted in them being under pressure as they are loosing business to catheter based procedures.

some interesting reading on the issues of Stats in medicine in an article here

 

[Tom C]

The Cleveland Clinic would be fine for a repair, as would the Mayo Clinic and the University of Pennsylvania. It is a complex operation with lots of sutures being placed on cusps which still have to move 100,00 times a day, so it does take a special surgeon to make it work. There may be other capable surgeons scattered around who can do it, but it is important to find someone with experience. Pellicle points out the business side of medicine and that might explain why some surgeons are less than enthusiastic about aortic valve repairs - it's something they can't offer.

My bicuspid valve was repaired at the Mayo Clinic in April 2013 and I couldn't be happier with the result. After one year my valve has trace regurgitation, and all my heart measurements are back to normal. I was initially worried about its durability, but my cardiologist assured my that tissue begins growing over the sutures within days of the operation and becomes very smooth and strong over the course of the first year. I also received a support ring around the base of the valve, something I had never heard of in my research, but another poster recently said that practice was started about 18 months ago. The ring should help keep the cusps aligned as my valve and I age. At this point I don't see how it is going to wear out or fail, at least not anytime soon. I'm back running about 5 miles a day and feel great.

My repair involved five separate steps/procedures and yet I was only on the pump for an hour and 20 minutes. Again, it takes a pretty good surgeon to do all that in about the same amount of time as a valve replacement. At age 52 I was willing to take the chance at repair, but I accepted the fact I may have to have one more operation. If it somehow fails before I'm 65, I'll probably get a mechanical valve. But if it lasts longer, a tissue valve might make sense and TAVI might also be the norm by then. And then there is always that chance, as suggested by my Mayo cardiologist, that the new repair techniques will allow my repaired valve to last the rest of my normal life.

Cleveland Clinic is not promoting a "failure prone" procedure. Like any other option, though, you have to make your own balance sheet and find out what makes sense to you.

 

[river-wear]

Wow Tom, that is a quick surgery. I had three procedures (leaflet repair, annuloplasty (ring) and S-plasty to reduce the ascending aorta from 4cm) and was on bypass for 2h 15m. My leaflets were pretty weird though, and the ones fused weren't the usual case.

I might have been the one who mentioned the "new" method to put the support ring around the valve to stablilze the leaflets. Apparently BAVs tend to stretch over time without it. The link I posted above includes a point about how the early repairs that only fixed leaflets tended to fail in just a couple of years.

Our main concern will probably be the potential for stenosis. Keep an eye on your mean gradient. "Mild" is less than 20mm Hg. (Severe is above 40mm Hg.)

 

[Aggie85]

Pellicle wrote:With an increase in cardiac procedures being done by Catheter these days, surgeons (at least their societies) made a choice some time ago to set them selves apart from these procedures. This has resulted in them being under pressure as they are loosing business to catheter based procedures.

Not necessarily so.... When I was at CC both the surgeon and cardiologists were "pushing" the bio valve BECAUSE of the coming advances of replacement valves being delivered in the future via Catheter. I had to sort of brow beat them into using a mechanical valve because of my screwed up femoral vein physiology not going all the way to my heart and therefore precluding any future replacements being done in the cath lab. But they were ALL FOR valves now that could be replaced via cath later. Referring here to the still experimental Melody Valve, if you're interested.

In the quotes below about success it's interesting to note that they specified between success at the big centers and lack of success at the broader based hospitals. It comes down to volume of procedures done at center vs a even well respected community based hospital. The guys at CC and places like it do HUNDREDS of these procedures a MONTH vs A HUNDRED a YEAR. That's why I went there (to CC). My multiple congenital defects give me a very unique cardio physiology I HAD to go to someone who had seen the most possible of my type of repair.

Having said all that, I think if given choice between a repair and replacement, I'd go replacement. Just my IMHO! Replacement doesn't necessarily mean coumadin life long. Nor another OHS in the future. Bio valves have come a long way and if you have the normal physiology for caths, there's a good possibility of replacing that bio valve in the future via the cath lab (Melody Valve), not OHS.

Good luck with this decision!

 

[grapesota]

Thank you everyone for all of the input.

Aggie85 - It s my impression that in 30 year olds and other younger patients, Bio-Valves do not hold up very long (~5-10 years) due to the strength of young people's immune systems causing the valve to deteriorate much faster than in older patients. Is the Melody Valve a tissue valve or a mechanical? If it is mechanical, than isn't getting a tissue valve now just to get a mechanical valve put in via transcatheter in 5-10 years sort of just kicking the can down the road? Other than avoiding anti-coagulants for the life span of the tissue valve, is their another benefit that I am overlooking? Thanks

 

[river-wear]

All current TAVR (transcatheter aortic valve replacement) valves are currently tissue valves. There has been talk of valve-in-valve procedures, but in a 30 year old, I'm pretty sure you'd run out of room in your lifetime.

Other benefit of a tissue valve? It's quiet like your native valve. There is no guarantee that you'd avoid warfarin - it's probably unlikely, but it can be required for recurrent bouts of a-fib. A lot of us have a-fib after surgery, but it goes away most of the time as your heart heals.

 

[pem]

I see you have received some great info and suggestions from this amazing community.

Though I ultimately decided to have my AVR locally (DC area) due to the excellent surgeon and facility close to home, I did take time to first visit Cleveland Clinic and evaluate it as an option. Based on my experiences there, I would recommend it to anyone for heart surgery. They have excellent outcomes, which I believe stem equally from world-class surgeons and a carefully designed and controlled patient process and personnel that minimizes post-op complications and issues.

Regarding repair vs replacement, I do recall hearing that repairs are more common in Europe - perhaps check out some studies from there. I looked into it briefly for myself but discovered quickly that with my level of stenosis, I wouldn't be a candidate.

I agree with other posters about tissue valve longevity as a function of age - they don't seem to last as long in younger people.

Get informed and then go with your gut! Good luck!

 

[Duffey]

I believe that CC is the most likely hospital in the country to perform a successful repair on your valve. Since they've advised that they will need to make the decision once they see the valve, it seems to me that you're covered either way. Most institutions emphasize numbers. It's undoubtedly in CC's best interest to make sure that you either have a properly repaired valve or a successful replacement.

 

[PGARG]

Hi grapesota, I'm scheduled for a replacement next week. I went through some of this recently. I'm 41 years old, so my decision tree may be a little different from yours, but not radically different.
I researched repair, and really really wanted it. Its the best possible outcome if you can get it. I also sent everything to Cleveland and they called me back with similar percentages.
I also talked to Stanford in california, and Dr. Gaudiani (my current surgeon). Stanford said they could repair, but warned that they can't guarantee about how long it lasts. I also have BiCuspid Valve, and actually my leaflets aren't even calcified. All other docs, and nurses almost scoffed at repair saying "why would you want heart surgery again".
I also researched Blood Thinning and life after it. This forum has helped me get over my fears of blood thinning. Seems like a lot of folks are able to be in it, for a long long time without major issues. That said, it does change your life a bit. You shouldn't be doing a lot of skiing, and mountain biking or sports which have chances of major injuries. For me being active is important, but i am usually just running, biking or playing badminton or something. So it is acceptable risk.

The other factor to consider for me was, with Repair, the doctors said almost a guarnantee of a valve replacement down the line. Even if my valve lasts 15, years, i'll be 55 years old. At that point in my life, who knows what other complications i might have. My body may not be able to handle another heart surgery. It is trauma that's best avoided, especially with age. That made me lean towards the mechanical valve, which is what i'm getting next week.

To complicate the decision process, With Repair, it if holds for 10-20 years, you may get the TAVR, which is easier and future medical advances. That is something you can keep your eye on.
On the mechanical valve side, with On-X valve, the blood thinning requirements have gone lower, plus new type of blood thinners in future.
So overall not an easy choice either way.

At 30 i might have also leaned towards Repair and take my chances. Now i have a more stable and less crazy lifestyle with more responsibilities, so i am ok making a few compromises. I think biological valves are neither here nor there for young folks. They guarantee another surgery in future, and aren't completely devoid of blood thinning or other complications. So its either repair or mech.

Its not easy for sure!

Only advise i can offer you is that, take multiple opinions and go with someone experienced. That's the best you can do. No perfect decisions here.