Newcomer on valve quest

[Randy & Robyn]

I have been perusing this site for over a month now, ever since I suddenly and, quite alarmingly, discovered that I have severe aortic insufficiency. I have had mild symptoms for years, mainly palpitations, but chalked it all up to nerves. Never any shortness of breath, chest pain, or dizziness. Yet I endured the tests my cardiologist ordered; ekg, echo, transesophageal echo and cardiac catheterization. To my dismay, I was informed I will need surgery within the next couple of months.

Honestly, I am still in denial, thinking that somehow this problem will resolve on its own. In the deeper recesses of my mind, I must know better since I have been doing unending research and getting some much needed dental work out of the way. (like having my wisdom teeth extracted...yippee...can't wait).

From what I gleaned from my test results, I still have a relatively healthy heart. My lvef was between 50 and 55%. I didn't catch the other numbers since the single, daunting phrase 'OPEN HEART SURGERY' was still reverberating in my ears. I know that time is of the essence regarding surgical outcome in these cases so I do not intend to delay the surgery as long as I would like to (50 or 60 years).

In any event, I am 36 years old and have already talked with several surgeons. Here are the options I am deliberating over. Any input you guys can give me would be a big help.

First option, my cardiologist is talking with Cleveland Clinic about valve repair, which he seemed to think might be possible. I have a normally configured tricuspid aorta with one leaflet prolapsing. From what I gather about valve repair, it is quite commonly done on the mitral valve but still considered experimental on the aorta. I don't feel like being a guinea pig and going back in for valve replacement a few months after a failed repair procedure. I am going to talk with them about it but I'm not very confident this would be a good option.

Second option, the Ross procedure with the renowned Dr. Paul Stelzer in New York. I have talked with him and he seems very confident in his abilities. His website, http://ps4ross.com, gives very good statistics regarding his series of surgical outcomes. Even getting a fair shot at forty years without further surgery and without anti-coagulants sounds pretty darn good. The one question I still need answered from him is how many of his patients who go in for the Ross actually get one. He is extremely selective of his candidates and for good reason, I am sure. ( He even divulged the true story of Arnold's failed Ross. Or at least another version of it. We will probably learn the truth about Roswell first.).

Third option, a minimally invasive biological valve replacement at Cleveland Clinic, probably utilizing the Carpentier Edwards Pericardial Magna. This would be undertaken with the knowledge and acceptance that I will need another replacement down the road. The surgeons I have talked with so far have been optimistic that it could last 20 years, even in someone my age. They also state there is no hard data yet to confirm that. Basically, it comes down to conjecture regarding the efficacy of the latest anti-calcification treatments with a proverbial roll of the dice thrown in for good measure. My goal would be to have it last long enough for a better option to come along, either a longer lasting biological or a mechanical that definitely does not need anti-coagulants. I realize this is presumptuous but it is conceivable and a valid thought process according to the surgeons I have consulted.

Last option, but not least. Go with the On-X valve. I have heard good things on this website about Dr. Naka at Columbia University utilizing this valve in his practice and have conversed with him about it. (He also has a very anti-Ross procedure penchant). I have also talked with a Dr. Lyle Joyce from the University of Minnesota who has experience with it. All the information I have gleaned about this newcomer to the mechanical valve market is phenomenal. Excellent hemodynamics, excellent resistance to thrombosis. I actually just received the results of the first year aspirin study done on this valve. If anyone is interested I will certainly post it.

I have been told by Dr. Joyce that I probably would not hear the ticking of any of these valves due to mild hearing loss ( from not protecting my ears properly while discharging firearms and a bit of loud music ). So I am not too worried about that.

But I am very concerned about taking coumadin. I have read all of the posts here, both the positive and the negative. I am just afraid that I might be one of the few who has problems. I have always had nosebleeds, even without the sinister benefit of coumadin therapy. They almost always stop quite easily. But will they once I inhibit my clotting factor?

This is the scariest time in my life. Everyone tells me that for a healthy person, the mortality rate for this surgery is only 0.5% ( at least at the hospitals I have chosen). Easy to tell yourself that until you are wheeled away to the operating room. At this point, I have become more or less numb to the whole scenario and am dealing quite well. However, once a date is set and begins looming, I know I will be a basket case. I hope I have the courage to go through with this, knowing that I will walk in there feeling fine and will walk out feeling like the fx dummy from the movie Alien.

After spending so much time here I feel I already know you people. I look forward to becoming a part of your family.

Randy

 

[rmn]

Welcome, from another newcomer. Our situations are very similar as I'm 34 and facing AVR next week. I'll let others address the various procedures in detail, because most have more knowledge than I do about these matters.

I will say that I drove myself crazy for a couple weeks reading and wondering about the 'right' choice. Given our ages, I think we have considerations that some don't have to worry about as much, primarily with respect to valve selection. I chose the mechanical valve, basically because I think that gives me the best opportunity of the available options to avoid future surgery when I may not be as healthy. The idea of a lifelong regimen of coumadin is not appealing, but if you read what many here write, it doesn't seem to be as life/activity limiting as you first imagine. At least, that's what I'm hoping for.

Whatever you decide, though - on a date and on a procedure - I think you'll be surprised how relieved you'll feel to finally have something concrete to deal with.

Anyway, good luck and best wishes to you.

 

[Tom F.]

Of course, being told that you need open heart surgery is difficult to hear. Being afraid is normal. No one one this site was happy to have it done, we all shared some measure of fear and, unfortunately, there are those who either avoid the surgery or put if off way too long. The reality is that you will be fine. I can say that because I was fine, and so is just about everyone in your age and health range that has it done. Just look around at this site if you are needing an example.

Now let me correct one comment you made. Aortic valve repair is not, and I repeat not, experimental in any way when done on a tricuspid aortic valve. I had it done. You can go on to the websites of any major heart center hospital, and aortic valve repair is dicussed as being the surgery of choice for some people.. Now it is more difficult I am told that a simple replacement with a St Jude, and as a consequence, smaller heart surgical centers may not offer it. But in Chicago, Rush University, U. of Chicago, and Northwestern all are having it done. Mine was done at Rush, and that in connection with repaid of an ascending aortic aneurysm.

Aortic valve repair on bicuspid aortic valves is a bit cutting edge, although there is an increasing number of docs. doing it. But then that is not your condition.

And for what its worth my preference order was valve repair, then the Ross. I have faith in both.

To be fair sometimes a re-op is needed with either a repair of a Ross. In my case I accepted that risk without looking back.

Feel free to e mail me if I can add any more.

 

[Phyllis]

Welcome to the forum. You have certainly done your research and have picked some of the best places to be among your choices. Dick had the Edwards bovine magna valve with minimally invasive surgery at Brigham and Women's hospital in 2003. He is very happy with his choice and had a smooth recovery, but he was 70 at the time of the AVR, so his choice was not as hard to make as yours is. You're on the right track, talk to all the surgeons, read all you can and at some point soon, you will suddenly know which valve and which procedure is right for you and when the day comes for surgery you will find yourself at peace with your decision. You WILL have the courage to go through with it and you will be surprised at how much better you feel as your recovery proceeds. Dick had no symptoms except for one faint on the tennis court that precipitated the surgery and now that he is back 100%, he often remarks that he now realizes there were other little signs that he was ignoring.
Many who have had the Ross procedure, repairs and mechanical valves wil join in here and we all wish you the very best.

 

[Karlynn]

Welcome Randy!
You have done your homework! The choice is personal, based on what you know about yourself and what you can live with the most. Make your choice based on what you feel will free you to live a long, happy life. At 36, you are definately looking at 1 more surgery, more likely 2, if you go with a tissue valve. I encourage you to try and project where you will be in 10 years, 20 years. I know they are hopeful that a tissue will last 20 years, but the chances are slim in someone in their 30's. Don't forget, most data they get comes from people probably about 20 years older than you. Their hearts don't pump as strongly and a replacement in your 50's, God willing, will still lead you to another one in, at least, your 70's.

I was 32 when I had my mitral valve replaced with a St. Jude mechanical. That was 13 years ago. I was attending sporting events, traveling to Europe and going to my children's high school graduations all around the time I would have been looking to, or recovering from another replacement if I'd had a tissue valve the first time around. Life on Coumadin has been a fair trade off for that time well spent. Having had my replacement at 32, I doubt whether I'll make it a long full lifetime without some other type of valve-related surgery. But I'm hoping. I mention this, not to pursuade you to "my side" , but just to give you the knowledge of my experiences so far.

Any choice still earns you a place in our family. The valve choice someone makes has as much meaning to us in the grande scheme of this site, as vanilla or chocolate ice cream.

 

[inlaguna]

Randy,

Repair, Ross, Mechanical and Tissue are the options so you did cover your bases.

Repair was out for me as I had a heavily calcified bicuspid valve.
My Surgeon was not high on the Ross procedure although there are people on this site who have done great with that op. I actually talked to a gentleman as part of my research who had a failed Ross( aborted during the surgery) and ended up with a Mechanical Valve. You might want to talk about contingency plans if they get in there and can't complete.

Mechanical was an option I considered very highly. I too was not thrilled with the drug regimen despite the fact that almost all do very well on coumadin. This was my surgeon's first choice for me.

Tissue- I decided on the Edwards Magna valve with the hope that I would get 10-20 years out of it ( I'm 41) and deal with the next decision when it comes. I considered technological advances down the road ,although no one can tell you quite what they will be. I'm hoping they continue to make the strides that have made Ross, Repair, and longer lasting tissue etc considerations today when they were not ( or just getting) on the radar screen 10 or 15 years ago.


Regardless of your decision, it already looks like it will be a well-informed, and a well thought out one. There's no real right answer....only the right answer for you.

Best of luck


Dan

 

[tobagotwo]

Randy,

What a fix. I got there in my fifties, so it was a lot easier for me.

Valve repair: Aortic valve repair in certain circumstances can be very successful. You have a trileaflet aortic valve with one leaf prolapsing. That is unusual, and could be promising for a repair. I would have rated that my number one choice, if they determine it's feasible.

Ross Procedure: You have a trileaflet valve, which means you likely don't have associated connective tissue problems. If your valve issues were also not caused by rheumatic fever or other illness, and your heart is basically normal, you would be a high-likelihood candidate. And Dr. Stelzer is, well, great. That would be my choice number two.

Tissue valve: I am generally a proponent of tissue valves. But there is no track record on the new generation of tissue valves in young patients. Tissue valves from before 2003 averaged about ten years in someone in their thirties, but sometimes lasted as little as six. My personal belief is that the new-treatment valves will last longer than that. However, I would not go into this thinking you will get 20 years from one at your age. Fifteen years sounds more likely to me. Even at 20 years, it means at least two more surgeries in your lifetime. Not necessarily a showstopper, but needs to be considered seriously. When you get older, you can reasonably expect the high mileage out of a tissue valve.

On-X: On-X is a great mechanical. I would expect you to get 30-35 years from one. While the valve itself would easily outlast you, I am not certain there is anyone who has experienced having the same one implanted for over 30 years yet, so the promise of one valve for life is still somewhat theoretical. Other issues tend to interfere and cause explantation. However, you could be the first.

You're in a tough spot. However, whatever choice you do make, be content with it. There is no value to second-guessing a valve that's already in.

Best wishes,

 

[John & Joann]

Dr. Pettersson, Cleveland Clinic has done many valve replacements and also many Ross procedures.

Check with Ben Smith on this site. Joann had double valve replacement and Ben had Ross procedure with the same surgeon. We both believe that he is the BEST! Cleveland Clinic would be an excellent choice for your decision. They will also give you a 2nd opinion with surgery done at an other facility.

Best Wishes!!

 

[gijanet]

Welcome to the group...........

Welcome to the group...........

Excellent hemodynamics, excellent resistance to thrombosis. I actually just received the results of the first year aspirin study done on this valve. If anyone is interested I will certainly post it.
Randy

Yes, yes, please do! We are in the process of researching mechanical valves, particularly the carbomedics and the ON-x. I would greatly appreciate the info.

As far as advice, I think I will leave you to the adult valvers on here. My daughter will be receiving a mechanical valve soon after a failed valve repair last spring, but her situation would not be comparable with yours, as her valve is severely deformed and misshapen.

Good luck on your decision and, again, welcome to the group. J.

 

[PapaHappyStar]

Hi Randy,

If you decide on the Ross Procedure, consider my surgeon at Columbia, Dr. Quaegebeur -- he may not have done as many adult RP's as Dr. Stelzer but for an uncomplicated procedure like yours probably will be I think Dr. Q might be faster since he wont shore up the autograft with tissue or dacron -- not necessary for a surgeon who has the trusty tailoring hands of a pediatric surgeon. For bicuspid surgery with a danger of root or ascending aortic enlargement I would go with Dr. Stelzer because he has more experience and a very impressive success rate with such patients.

I agree with Bob's ( tobagotwo ) assessment of your choices -- my own first choice if in your position would be to throughly investigate the repair option, do you have any idea of what is causing the prolapse? Is there a mismatch in the valve leaflet geometries, or is it something with the valve leaflet tissue? I dont know if this can be resolved but may be important in your choice of surgery. I think mitral valve prolapse is due to a tear or weakness in the ligament holding the mitral valve in position but the aortic valve relies on its tri leaflet geometry and tissue rigidity for stability under pressure.

If the reason behind the prolapse is not known then since you have some time to make a choice -- maybe you can talk to your cardiologist or even someone at Cleveland Clinic about tests to diagnose the cause if possible.

Regards,
Burair

 

[Randy & Robyn]

Thanks, everybody, for all your support. It means alot.

I think at this point I agree with the consensus that repair would be the way to go if the surgeon deems it feasible. My next choice would be the Ross. My third choice would be difficult. Going with the biological valve would virtually guarantee another surgery, possibly after less than ten years. I think I might lean toward the On-X and hope it turns out to be as durable as I expect.

By the way, I will post the On-X 1st year aspirin study results tonight in a new thread. I will be very interested to hear what everyone's opinion is on them.

 

[Bryan B]

Hi Randy and welcome. From your description it sounds like our aortic valve condition is/was very similar with one exception...I contracted endocarditis in October 03 which further damaged my valve. I was born with a VSD (ventricular septal defect) but no disease of my aortic valve. I was followed closely since they detected the murmur at 2 weeks of age. They considered surgery to repair the VSD at age 2 and age 10, but since I was fairing well they decided to put it off as long as possible.

At age 17 they detected a new murmur. My VSD had closed to the point where the velocity of the blood flowing through the hole was causing one of the leaflets on my aortic valve to prolapse (kind of like putting your finger on the nozzle of a hose to increase the velocity of the water), thus causing insufficiency and regurgitation. Again they decided to wait on surgery because I was asymptomatic for the most part.

Fast forward to 2003 and endocarditis which made it time for surgery. I decided to have the Ross Procedure done and chose the CE bovine pericardial valve as a backup if my surgeon decided I wasn't a good candidate once he got an up close look at my plumbing. Once he got in there he decided to try and repair my aortic valve. After attempting the repair he cranked the engine back up, but he didn't have full confidence that the repair would hold up long term. He knew that one of the reasons I wanted the RP was because I was hoping for the longest possible solution without going the Coumadin route. He also said that I was a perfect candidate to receive the RP, so he shut 'er back down and proceeded with the RP. From what I gathered he felt like he could have successfully repaired the valve if not for the additional damage the endocarditis had caused.

I didn't mean to get so long winded to get to my point, but what I'm getting at is that I do think there is a good chance that a repair may be a viable option for you given your circumstances. It sounds like you have thought everything through, and I wish you the best possible outcome with your surgery whether it be a repair or a replacement.

 

[Gemma]

Nosebleeds

Nosebleeds

Hi Randy and Welcome!
I think you've covered all your bases in terms of researching valve options - the toughest part is choosing which valve to go for but whatever you choose, it will be right for you.
My boyfriend Jim had his aortic valve replaced with a mechanical Sorin valve in December 2003. We're in England - not sure if these valves are really used in the USA but his surgeon felt it was the best valve available.
Anyway, what I really wanted to mention to you is the nosebleed issue. Jim had serious problems with them for many years prior to his AVR surgery. He had vessels in his nostril cauterised, and had several very bad and prolonged nosebleeds. However, since his surgery (and I say this with my fingers crossed and knocking on my wooden desk!) he has had no recurrence of this - a couple of short light nosebleeds in the couple of weeks he was first home, but nothing on the scale of the ones he had prior to his surgery.
I believe Bob (tobagotwo) posted something relating to this a few weeks ago - if you do a search it should pop up. There's a theory that aortic valve problems may cause nosebleeds, or it may be that the raised blood pressure makes existing nosebleed problems worse.
Just thought it was worth mentioning.
Gemma.