Diagnosed with a Bicuspid Valve....need opinions.

[pellicle]

Can I ask all of you why you didn’t pursue the ROSS Procedure?

Well I had my first valve replacement in 1992, which was a cryopreserved homograph. The ROSS came about some years later as I understand. On my latest valve replacement (2011) the verdict was that a mechanical was the best way for me as at 48 a tissue would not last my lifespan. Having had my first OHS (a repair) back in the 70's this was to be my 3rd OHS, a fourth is increasingly risky even more so when age is factored in.

What I have learned from this is that I have learned that anticoagulants (the misnomer thinners reminds me of paint) are misunderstood perhaps because people are relying on out of date practices and inadequate testing regimes. A modern approach is to test weekly with your own device and adjust as required. Before you seem surprised, ask any diabetic if they go to a lab to test their sugar levels and if they determine their own doses of insulin.



I asked earlier as I know nothing about the Ross apart from what I have read recently.

What I have also learned is that every surgery brings with it risks. In my last surgery I got a "trivial" infection in my sternum. This has been a real long term drag, and a year (and two "debridement" surgeries) later I am still not clear of it. If I could influence time I would probably have gone for the mechanical back in 1992 (especially if they were as good then as they are now) as then I would not be battling this operative infection

Minimise risk is my view.

From what I read the Ross seems to do that. Dunno about what they put in for the valve they swap out though, I guess its a prosthetic.

Lastly, I would be curious to know if the Ross has less complications than a routine mechanical prosthetic. Blood thinners may not turn out to be the issue you thought they were. Having said that you should see if you would have issues with warfarin.

 

[PeteCrev]

Hi Pete,
I basically was in the same boat as you. I'm a year younger and I've known about my BAV since birth. I started getting symptomatic, so they had me do a stress test. I didn't do well, but my echo showed a 1.4 opening. Fortunately, my cardio was aggressive and had me get a cardiac cath. That showed the opening as 0.8. I'm scheduled for surgery on the 27th. All I can recommend is be proactive and be your own advocate. Good luck.

Mork-
What kind of procedure are you getting? Please post recovery and good luck.
Thanks

 

[scott.eitman]

Pellicle-
Wanted the Ross so I would have to be on blood thinners forever and so I wouldn't need surgery in 10 years when the valve goes bad again....and I know the ROSS is no guarrantee.

I am not a fan of the Ross. Why risk one valve to help another. Either way, you are getting a prosthetic valve. It the reason to go with the Ross is to avoid Coumadin, I can understand, but why not just a bioprosthetic valve for the Aortic. The Ross does NOT mean no surgery on 10 years.

Do get another opinion. Do not worry about offending Drs. If they get offended, that is all the more reason to get a 2nd opinion. I saw numerous drs from differing hospitals before my 1st surgery. They ranged from mechanical to homograft to the Ross. Your head may spin. At the time, my Cardio did not think I needed surgery, but every other Dr. said I did.

Stay Well.
Scott

 

[PeteCrev]

I am not a fan of the Ross. Why risk one valve to help another. Either way, you are getting a prosthetic valve. It the reason to go with the Ross is to avoid Coumadin, I can understand, but why not just a bioprosthetic valve for the Aortic. The Ross does NOT mean no surgery on 10 years.

Do get another opinion. Do not worry about offending Drs. If they get offended, that is all the more reason to get a 2nd opinion. I saw numerous drs from differing hospitals before my 1st surgery. They ranged from mechanical to homograft to the Ross. Your head may spin. At the time, my Cardio did not think I needed surgery, but every other Dr. said I did.

Stay Well.
Scott

Thank you….I realize that the ROSS is no guarantee. It’s just the blood thinners that I really don’t want to be on. I like you are going back and forth.

 

[neo]

Diagnosed with a Bicuspid Valve....need opinions.

Theoretically, a Ross Procedure could last for life. I had one that only lasted about 10 years. Now I have one of the latest 3rd gen tissue valves, the St Jude Trifecta. Fortunately, my pulmonary replacement from the Ross is still in good order. They say about 50% of the Ross Pulmonary replacements make it past 10 years. Much of the success of a Ross depends on the skill of the surgeon doing it. At the time of mine, they did not know to support the aortic root with Dacron. Now, it is pretty common to do that. So if you're going for a Ross, make sure you go with a surgeon who does alot of them and check his scorecard.

Give some real thought to the newer 3rd gen valves as well. It is pretty much a tie between the St Jude Trifecta and the Edwards Magna Ease. With the Trifecta, they were able to get 30 years on a rapid accelerator. Although this does not figure in calcification, these newer valves have newer anti-calcification treatments which hopefully will help.

Also consider that TAVR (stented valves placed through the groin) are being done much more frequently these days. It is very conceivable that when your tissue valve started to fail someday, that they could replace it with a TAVR.

 

[Mork]

Mork-
What kind of procedure are you getting? Please post recovery and good luck.
Thanks

I'm getting a mechanical valve (On-X) put in. I too, was very hesitant about the need for anticoagulation, but at my age (almost 37) it seemed like a better option than repeat surgeries. My daughter is 5 years old now, and won't really understand what is happening. She will understand when she is older. I'm choosing to spare my family, and myself, additional surgeries. Reading the Anticoagulation board here really helped me understand it wasn't so scary. It will be a pain in the ass, no doubt, but I think manageable. In the end, I think that what valve you choose (tissue or mechanical) is the most personal decision someone in our position can make. The only wrong decision is to do nothing.

 

[Protimenow]

You mentioned that you had good insurance.

My murmur was first heard when I was in my early 20s. I was told that I would need surgery 'in 25 years.' My symptoms slowly worsened.

I got to a point - before the 25 year clock was up - where I realized that I had good insurance, I was still fairly strong, and I wondered 'how sick do I have to be' before getting the surgery. My cardio referred me to a surgeon, and they agreed that I was 'sick' enough to qualify for a new valve.

At that time, Ross hadn't been developed. Being in my early 40s, there was no option other than a mechanical valve.

Six months after my surgery, I lost my job (possibly because I was out for six weeks and they wanted someone who they trusted to be always on the job), with no insurance. If I had waited, it's not improbable that I wouldn't have had the insurance to cover the operation when I REALLY needed it. I chose to be proactive, not to wait, and to get the thing done.

Yes, I've been on warfarin for more than 20 years. I've done a good job of testing my INR and a TERRIBLE job of following my INR. For a while, I tested monthly or even much less often. I didn't realize during that period how big a chance I was taking by NOT monitoring my INR. (I didn't have insurance or a doctor who seemed to think that regular testing mattered). I've been self-testing for more than four years. Most of the time, I test weekly.

I also manage my dosing.

Personally, if I was in my early 50s, I wouldn't choose a procedure or valve that may need repair or replacement in 10 years or less just to avoid anticoagulants for the rest of my life. With regular testing and simple management, being on warfarin is really not that big a deal.

Also -- there's quite a bit of research going on to find a replacement for warfarin. By the time TAVI or other procedures have been perfected, and enough surgeons have been trained to perform them, there may even be a medication that requires minimal monitoring and makes these prosthetic valves seem a lot safer.

So - for myself - I chose to have my surgery when I still had pretty good heart function and strength and good insurance. This is something that you should consider, too.

 

[Classtime Sailer]

Getting in on this late but,

My G.P. first heard the murmur and ordered the echo. He recommended a Cardiologist. The Cardiologist recommended surgery. From that point on, I only consulted with the surgeon and post surgery saw a cardiologist recommended by the surgeon. The surgeon said I could wait but if I was worried, I could do it sooner and get on with my life. Sooner it was.

I have a buddy who got the Ross and he is very happy and one hell of a bike racer. He's in his mid 30's and (fingers crossed) won't have to go back. We're in California and both of us had Dr. V. Starnes at USC.

 

[PeteCrev]

Does anyone know the common routine for cardiologists sending you for surgery? I just went to get a ECHO and had an bicuspid opening of a 1.0 and he was very vague when speaking to me, but just said to go back in 3 months rather than 6 months for another ECHO. Is there a certain time frame they must observe me? Sorry for the stupid question….this is all new to me.

 

[Heart Of The Sunrise]

Pete:
I do not know if there are any hard set rules. If he said 3 months and not 6 months I would say your surgery date will be sooner than later. My feeling was that if my surgery was inevitable I wanted to get it done ASAP due to the size of my aortic aneurysm which was 4.9 cm. I can not say enough about the quality of my care with Dr. Bavaria and at Penn. I recommend Penn extremely highly. I was 5.5 months was discovery and diagnosis to successful surgery.

 

[PeteCrev]

Pete:
I do not know if there are any hard set rules. If he said 3 months and not 6 months I would say your surgery date will be sooner than later. My feeling was that if my surgery was inevitable I wanted to get it done ASAP due to the size of my aortic aneurysm which was 4.9 cm. I can not say enough about the quality of my care with Dr. Bavaria and at Penn. I recommend Penn extremely highly. I was 5.5 months was discovery and diagnosis to successful surgery.

Thank you.....What kind of surgery did you have? And how was recovery? I was also considering Dr. Stelzer in Manhattan.

 

[Duffey]

Does anyone know the common routine for cardiologists sending you for surgery? I just went to get a ECHO and had an bicuspid opening of a 1.0 and he was very vague when speaking to me, but just said to go back in 3 months rather than 6 months for another ECHO. Is there a certain time frame they must observe me? Sorry for the stupid question….this is all new to me.

The cardiologist never sent me to the surgeon. Frequently you consult with a surgeon and make the decision with them. That's what happened in my case. There's no standard time frame that's followed. It's all based on whether you are or aren't having symptoms, and data observation from an echo, TEE, or angiogram.

 

[Protimenow]

In my case - 22 years ago - my cardiologist was just monitoring the valve. I would have regular echo and occasional stress testing.

I finally asked him 'how sick to I have to be before I need surgery?' and he referred me to an excellent surgeon who had done many of these relatively new (at that time) valve replacements. If you're still strong, have good insurance, and your heart is otherwise healthy (mine, I think, was starting to weaken as a result of valve leakage), you might consider sooner rather than later -- or at least, select and ask a surgeon.

 

[clay_from_nj]

Talk to the experts and have your specific case carefully considered before going for the Ross procedure. According to "Should we still do the Ross operation in adults?", Nicholas T. Kouchoukos, Current Opinion in Cardiology 2011 26:94–98, the Ross procedure should not be done routinely in adults because of accelerated deterioration after the first decade. Ross is another great tool, but not the Holy Grail.

 

[PeteCrev]

Talk to the experts and have your specific case carefully considered before going for the Ross procedure. According to "Should we still do the Ross operation in adults?", Nicholas T. Kouchoukos, Current Opinion in Cardiology 2011 26:94–98, the Ross procedure should not be done routinely in adults because of accelerated deterioration after the first decade. Ross is another great tool, but not the Holy Grail.

Thank you....I have an appt in November with a ROSS Surgeon in Manhattan....supposed to be the best around.