Me too!
Me too!
Hi Jared,
I can relate to your situation. I had a Ross Procedure to replace my regurgitating bicuspid aortic valve when I was 17 and then had a reoperation to replace the failed neo-aortic valve in December at the age of 23.
Valve choice is always difficult, but in someone our age it becomes a nearly impossible decision to make. As I know, the thought of being on a lifetime of coumadin is disconcerting. At the same time, guaranteeing oneself another surgery by choosing a tissue valve or Ross Procedure is equally taxing on the emotions. As my second surgeon told me there is no "right" choice. There really isn't even a "good" choice. On the other hand, some intervention must be taken or we will undergo congestive heart failure ane die slowly, painfully, and prematurely. So in this sense any choice is a "good" choice because it prolongs life. It will be a tough decision, but one you must make. Hopefully, I can provide a few insights...
I strongly suggest that you do not go with the Ross Proecedure. Ross Procedures in patients whose have BAV AND a primary diagnosis of regurgitation is not recommended. End of story. There have been too many patients like myself whose neo-aortic roots have dilated out of control and caused the valve to leak and resurgery to become necessary. Second, it turns you into a two valve patient. You get a tissue valve in the pulmonary position. These are prone to wear out over time. Everyone dismisses the risk because surgery to replace the pumlonary valve is less risky than aortic valve replacement. Nonetheless, it is still open heart surgery. The Mayo Clinic and the Cleveland Clinic are widely recognized as two of the best heart centers in the country. The Mayo Clinic does not perform Ross Procedures in patients over two years of age. If you ask them for the RP, they will refuse to do it. The Cleveland Clinic performs very, very few Ross Procedures each year. This should say something. It is not a popular operation anymore except in ideal candidates, which you are not.
Your doctor did not inform you correctly about the long term probability of stroke or bleeding event for someone with a mechanical valve on coumadin. If you believe that these patients have a serious incident at a 3% rate per year, then the probability of NOT HAVING any incidents at 15 years would be .97^15. This comes out to be 63.3%. Thus, the probability of HAVING an event would be 36.7%. However, I think that 3% per annum is a rather high estimate. Preliminary studies at Mayo have shown that those who self monitor reduce there risk to around 1% per year. At 15 years this would be .99^15 or an 86% chance of being INCIDENT FREE. Thus, the probability of HAVING an event would be 14%. These probabilities fluctuate from individual to individual based on lifestyle and coumadin management. If you do not take major risks and manage with diligence your chance of incident should be relatively recuded. Of course, no one wants to have a stroke. So it is a real risk and one that should be thoroughly wieghed in the decision process.
On the other hand, second and third operations on individuals with CHD like ourselves are becoming more and more commonplace. People with defects are surviving into adulthood and they need second, third, and even fourth operations. Surgeons are becoming more and more experienced with the obstacles faced in the multiple surgery patients. Risks of complications in multiple surgeries have been reduced, but remain signficant. Open-heart surgery is serious business and carries with it a risk or mortality and morbidity, which should be weighed against the risk of long-term coumadin use.
In my opinion, it comes down to your personal wishes. With mechanical you have the chance of anti-coagulation issues such as stroke. With a tissue valve you have the chance of issues with multiple surgeries. However, this is not to say that if you go mechanical you won't have to have another surgery. Mechanical valves sometimes need replacing too, but at a much lower rate than tissues. The risks are real on both sides. You need to do some personal soul searching and decide which you are most ready to deal with.
You must remember though that tissue valves in patients our ages do not last as long as in older patients. My surgeon gave my second aortic tissue valve a 50% chance of lasting ten years. I think this is a fair assessment. Expecting it to last 15 seems optimistic at best and unrealistic at worse.
In my first surgery, I went with the Ross Procedure. In my second surgery, I went with a tissue valve. They were both very difficult decisions whch were based on my personal situation which was quite complex. Everyone is different. If I were in your situation, I would probably get the ON-X mechanical valve. However, it would be an extremely difficult decision and one that you must think over. If you ever need to talk you can PM me.
Brad
LINDA
