My son, Andrew, has Marfan Syndrome and had Aortic Valve replacement with Dr.Martin at Shands Teaching Hospital in Florida.. He is now 21 and seems to be doing fine. It is absolutely no walk in the park, but rest assure that technology is great today. You are young be greatful for that because that is what my son had going for him. He has probably another one coming his way in the future. Marfan syndrome is a connective tissue disorder that makes everything stretch, he is 6 foot 8 and lankey. Be safe and always think positive... It will be ok. Kim
I was born with a heart condition called Tetralogy of Fallot and ended up needing a pulmonary valve replacement. I had the valve replaced back in '92 and will likely need a new one in the next 3-5 years as they only last so long. However I have gotten a lot of good years out of my valve. I am not sure what it means to be bicuspid...but will do some reading and research. I was talking to my doctor the other day about a new procedure for valve replacements. Instead of having open heart surgery, they can do a cardiac catherization, where they go up through a vein in the groin, or arm and place the new valve on. This is incredible news! The recovery time is much quicker. I am currently having my medical files transfered to a hospital in Toronto that does the procedure to see if I might be a candidate when the time comes. Much less invasive. I know they are now doing these procedures in Montreal and Toronto. My hospital in Halifax is working hard to get a lab there, so that me, and many other patients can benefit from this amazing technological development.
The most common abnormality occurs when the aortic valve has only two (bicuspid), rather than three (trcuspid) leaflets.. Often these leaflets are thickened and less pliable than normal, and the lines of separation between them are fused together to a variable degree and may appear to be one rather than two. When the aortic valve does not open freely, the left ventricle must work harder to eject blood into the aorta. This will enlarge the left ventricle to compensate.
Long term prognosis is good for replacement if there are no other heart problems. A biological valve replacement lasts for about 10 years, and for younger individuals a metal valve is recommended as it lasts much longer and probably a lifetime, but it requires medication for a lifetime (blood thinner).
Does the echo exam indicate any diastolic dysfunction due to a thickened septum? Is your heart's EF normal (range 50 to 75%)?
Thank you all for your responses.
Kenkeith,What type of valve did you get? To me, the key risk of the mechanical valve is being young. If you have a 3% chance of thromboembolism (blood clots) or of hemorraging per year,both either deadly or potentially disabling etc, how many years can you roll the dice before the cumulative risk becomes unacceptable. For instance, I am 38 yrs old, if I want to make it to 70, I have to take a 3% chance 32 times...not good odds. I am considering a tissue valve when I am up for surgery and then a second replacement with a mechanical, but am not decided as going through the surgery and recovery must be incredibly tough (dont want to do it once, let alone a second time with increased risk). I hope all is well with you...I would be delighted to get to your age and be able to have a full life.
I'm in the 7th decade of life and age is a factor and a dilemma for me given the choice of major surgery or not. In the near future I may contact the Mayo Clinical for an evaluation and whether or not an off-pump procedure (minimal intervention) is appropriate for the current condition.
Off-pump bypass surgery is to decrease the high risk of a stroke, renal failure and need for blood transfusion. Also of great interest is the possibility that the off-pump approach may lessen the risk of what are called cognitive changes that have been seen in many patients who underwent on-the-pump surgery. There can be be short-term changes include memory loss, difficulty thinking clearly and problems concentrating for lengthy periods. They usually improve over the months following surgery. But a study in documented in New England Journal of Medicine raised the question of whether these short-term changes may affect long-term cognitive function. That concerns me as I feel well now!
Because I feel very well, my doctor states a valve replacement would not do anything for me given my present condition. The risk of waiting too long runs the risk of left ventricle dysfunction that may not completely recover after a valve replacement procedure. That I know.
You may be making the correct decision not to have a metalic valve as new developments and procedures are evolving and within 10 years or so there may be better options available at that time.
You young bastards who need heart surgery scare because I am 35!
Well to answer your question (and since aortic stenosis is like my bread and butter as far as examining and making friends since I follow the bad ones every six months).
The answer is can a tricuspid valve become bicuspid? No, can the technology to see a heart valve improve. Yes and can people not see things, yes.
You were probably misdiagnosed in the past. The amazing changes in ultrasound in just the last 2 years would blow your mind as far as image quality!
Also, bicuspid valves can mimick tricuspid valves. I mean there are stand out fishmouth looking valves. Others have trileaflets that are semi-attached. WAIT!! You are right. a semi-attached trileaflet valve can progress to a bileaflet b/c of callouses (thinkening like you get on your hands) because of cacification and the scarring from turbulent flow. But, then, it wasnt truly tri-leaflet to begin with if it was attached.
Interesting thoughts. Ok, well at your age, get it fixed with a prosthetic mechanical valve. Thats your only option. Do it before your heart is damaged. The timing is to time it before damage is done structurally.
You will be on coumadin for life (a blood thinner). Which is kind of a pain in the arse. But for all the guys that I have talked to who had their valve replaced. And I say this all the time. The guys in their forties or your age say . I FEEL GREAT NOW!
Like a new lease on life
Aortic valve surgery is sort of a happy moment for me because the people I serially follow who look like ****. Get it done (given they survive the surgery, which 99% do). Then they come back with rosy cheeks and a spring in their step. Wondering why they didnt have it done sooner. One guy called his 30's "wasted years" because he could barely walk up a flight of stairs.
Aortic valve surgery is simple and the progress people make is astounding. Of course, there are exceptions but this one thing that is common and they have gotten pretty good at it.
Oh, and if your aortic regurgitation gets to large, it can mess up the pump function of the heart so dont wait too long