Aortic Root Replacement with Valve Resuspension

[Turkey Hunter]

Hi Chris and welcome to this site....

Hi Chris and welcome to this site....

To begin, you and your wife are facing the tughest decision you will ever make. But remember that this choice is yours and no one can make it for you. Your are correct in asking the folks here, as they have experienced everything you are going through. We are here to give you our thoughts and experiences.

I myself chose the Ross Procedure (BTW, I was told the same thing Perry stated about Arnold) (However, I heard he had two mechanicals now....who knows, he won't talk about it!) My choice seemed to be the perfect choice and handed to me on a silver platter. I will admit, I was petrified of Coumadin and was dead set against being on it at all.

As I still prefer to not take any additional medications, I have learned much here about the 'real' coumadin. It is bad for some....but most have no real issue's with it. Do not allow that alone to be the catalyst of your choice.

Your are doing the right thing by asking numerous questions, that is how each of us who have been through this learned what we have thus far.

God Bless, and keep up your questions.

Ben

 

[Granbonny]

Hi Chris

Hi Chris

I, too, live in Ga..and had my surgery at St. Joseph's in Atlanta..and the same group of surgeons that Deane had. ..I was age 61 and blessed that my family was young enough to see me thru it... As I have posted many times..My surgeon told my family..I will replace her with a mechanical valve..for she never wants to go thru this type surgery again.It will be 4 years March 25th ..NO problems with coumadin..Even when I had major dental surgery done this past Monday. Stayed on my coumadin. And no bleeding........Things to ponder.? Will she still have insurance..if she goes with tissue..10-15 years from now?(Average cost for OHS.$100,000) Family to take care of her? Average recoup..6 weeks to 6 months.....I know she will be just fine. which ever valve she goes with.. Welcome and let us know more. Bonnie

 

[Perry]

The Big Choice

The Big Choice

The Arnold Schwarzenegger story was offered up so as not to let his experience detract from the Ross Procedure. I believe I will go with the Ross P., but at 19 days from surgery I am still pondering (Ross, tissue, mechanical, repair). I am taking the approach that there are benefits to all of the above. Without a crystal ball what else can you do.

Know your situation, the options available, the surgeons and list your choices in order. When they nudge me awake afterward I will soon find out what was done (my fist choice or second...) and I will move forward from there.

Perry

 

[Mary]

. . . I am taking the approach that there are benefits to all of the above. Without a crystal ball what else can you do.
Perry

Ok Perry,
I rarely lend my official VR crystal ball out, but I'm making an exception in your case. Please send it back when you're through.

 

[Karlynn]

The Arnold Schwarzenegger story was offered up so as not to let his experience detract from the Ross Procedure. I believe I will go with the Ross P., but at 19 days from surgery I am still pondering (Ross, tissue, mechanical, repair). I am taking the approach that there are benefits to all of the above. Without a crystal ball what else can you do.

Know your situation, the options available, the surgeons and list your choices in order. When they nudge me awake afterward I will soon find out what was done (my fist choice or second...) and I will move forward from there.

Perry

Make the choice that feels the most right to you. If no choice seems to stand out, then hopefully you have enough faith in the doctor (and how his talking jives with your research) to trust him to make the choice.

 

[Perry]

Good advice and a crystall ball - thanks all!!

 

[xbxb]

Tissue Saving Repair Aortic Root Replacement

Tissue Saving Repair Aortic Root Replacement

Chris,
I am 43 and on August 2, 2005 (I was 42) had a Bicuspid Tissue Saving Repair of the Aortic Valve and Aortic Root Replacement.
My surgery was performed at the Mass Gen Hospital in Boston.
I had known about my bicuspid valve since I was twenty and was quite active- played basketball 2-3 times a week. A month prior to my surgery I went to the emergency room due to shortness of breath.
I did a lot of research along with my cardiologist before deciding on Mass Gen. - and there is just not a lot of data in the medical literature on repairing a bicuspid valve. The Ross procedure really was not an option. The surgeons I spoke with were not sold on the procedure and did not feel it offered a lot of benefits for my condition. My own opinon was that once you do the Ross you can never go back and that was a concern. That said I am not a expert and there are many people here that are fans of the procedure.
Before surgery they were not sure if a repair (given 50% - 80% chance it was possible) and I had to decide which type of valve I preffered. It was my decision. I would have gone with an animal valve - I think I preffered a bovine. However my surgeon uses porcine valves. I did not want a lifestyle change with a mechanical valve being so young. That and the Aorta specialist made me comfortable in his words "he does not fear a second surgery". This because I was having it done in a major institution and that the technology keeps improving. The risk factor goes up - due to scar tissue and I was always pretty confident that they would repair my own valve.
50% of the people that have a Bicuspid Aortic valve have a dilated Aorta that they will need replaced. The genetic defect of a bicuspid Aortic valve is also a defect of the Aorta.
FYI my repaired valve is much noisier than it was before. . . not a big deal.
Tissue valves last 10-20 yrs. My surgeon agreed that much of the new data promoted on these treated animal valve is suspect. They just do not know how long they will last. FYI - the world record for an animal valve is 25 yrs.
All the surgeons I spoke with - received opinions from Brigham and Womans, Cleveland Clinic, Texas Heart Institute, Beth Israel, and my doctors agreed though they cannot really tell you why, is that it is always better to use your own tissue. I even asked my surgeon that in the event of a resurgery would he repair my bicuspid again - he said that he never thought about it, but yes he would try given that situation.
The hope is that my repair will last the rest of my life - or at least till I am very old where there should be many new options available. My Aorta dilation is no longer a high risk - was much more of a concern than the valve itself.
My surgeon who is an older person has done only 15 surgeries (in his whole career) of my type - has never had to rerepair a tissue saving bicuspid repair.
There is a little bit of data from the medical literature 98-02 where success was soso on bicuspid repairs but the data pool is very small - remember most people that have a bicuspid valve repair are older and have it replaced.
My coronary arteries were clean and that I was told make the surgery 10 times easier - no bypass needed.
The first 3 months for me were tough. I am told my experience was a little tougher that what most patients experience. I did not feel well after surgery and it took a long time for me to start feeling myself. I also ran a high fever twice (unrelated to my surgery)that kept pushing my recovery back.
So. . . 6 months after surgery I am doing great. I recently went back to work and I had joined a cardio rehab which I highly recommend. I am working out 5-6 times a week including playing basketball 2-3 times a week and having more energy than before. One of the biggest hurdles to get over after surgery is being convinced that you are "fixed". This has taken me a long time but I now believe it. Tell your wife that recovery is a long SLOW process. You can't rush it and need to have patience. The good news is ultimately she will be fine and the not so fun memories will fade. . .

David Cohen