I just spoke with Dr. Cosgrove's office at the CCF

[Christian]

As I've stated in other posts, my 29 year old wife has severe MR caused by thickening in both her mitral leaflets. No symptoms yet. No enlargement.

For those of you who have had Cosgrove repairs, I'm sure you know the drill. It's almost analogous to trying to call God on the telephone.

I was definitely rushed through the call, but I was able to convey the information I wanted to convey, and I got all my questions answered (all in twelve minutes!). I explained that we were considering "early" (before symptoms or enlargement occur) surgery, but that decision would have to be based largely on the chances of repair. I also explained that my wife has been given a 70-80% chance of repair by a CCF valve specialist (not a surgeon) and a 99% chance of repair by a prominent mitral valve surgeon in Michigan.

Debbie (the woman I spoke with) strongly encouraged me to get Dr. Cosgrove's opinion -- she says the CCF physicians all have different opinions and it's important to get one from the horse's mouth (I used to wonder whether there was only one "right" answer and whether it would be a consensus opinion. I guess not).

So we worked out a "game plan." Get the local doctor to send up the stress echo tapes, have Cosgrove review them, then when we go up in July for our regular appointment, we can get any further tests (if he deems them necessary).

It feels good to have a plan, and to be in "good hands." I think the worst part about all of this is the uncertainty. "What's surgery like?" "What are the results?" "What are the replacement options?" "Will she live a normal life?" It's all mind-boggling.

Anyway, just venting.

 

[LUVMyBirman]

Hi Christian,

Sounds like you have done your homework. Cosgrove is one of the best. You can't go wrong there.

Being that your wife is a young woman..... would recommend weighing out options between the mechanical and tissue valves. In the event the valve cannot be repaired you have discussed your options.

If you would like to have children, you may be able to safely carry out a pregnancy with the tissue valve. With the mechanical, the blood thinning medication makes it difficult.

She will get more time as far as surgical redos with the mechanical vs. tissue. I can tell you from experience you don't want to keep going there. Each time they go in there is scar tissue to contend with. Making each surgery more serious than the last. Recovery was more difficult than going through the actual surgery itself.

Unfortunately there is not a 'perfect' valve. Other than preserving your natural one. I was given two options at the time of my surgery. Mitral Valve repair or mechanical replacement. I also advised my surgeon that if you are not pretty certain a 'successful' repair can be carried out, don't even try it. Later I find out there was a young woman across the hall in the hospital whom underwent MVR repair the day before I. She was regurgitating at a 2+ after surgery! Made me feel better about my choice.

Keep us posted. If your wife would like to talk to someone her age that has been there. Feel free to contact me anytime. Would be happy to talk it over with her on the phone too if you would like.

 

[Ross]

Christian, you might get some comfort and peace of mind from this thread:
http://www.valvereplacement.com/forums/showthread.php?s=&threadid=1160

Cosgrove is about the best, if not the best, in his field. I've found no one to dispute this yet.

 

[Christian]

Gina: Thanks for the note. It's always nice to hear from someone who's been there. As things progress, I'm sure my wife would like to speak with you (and the other mitral folks). Right now, I'm doing all the research (I'm a type A personality. I think my wife is Type Z). We haven't actually discussed replacement options with anyone, but we're aware of their strengths and weaknesses. We'd like to have one child (maybe two), so we're gunning for a repair. If that's not possible, we'd consider a tissue valve if the odds are good we'll get 10 years out of it. This new CE bovine mitral valve has promise in young folks, but I'm not sure whether a pregnancy would hasten its deterioration. We'd have to talk it through with the doctors.

http://www.csmc.edu/cvs/md/valve/durabil.htm#CE Pericardial

Ross: Thanks for the link. Actually, JenniferO was the one who briefed me on what to expect when I called Cosgroves' office. We feel very comfortable going with him. Back in 1998 when we realized surgery was more than just a vague eventuality, I spent about 200 hours over a period of two months researching mitral valve surgeons (phone calls, web research, etc.). I concluded that Cosgrove was Jill's best option. A short week later, Jill's cardiologist phoned us and suggested we go to the CCF with the long term goal of having a Cosgrove surgery. He had been doing similar research during the same period. Quite vindicating.

 

[Bill Hall]

Christian - I think you are doing a great job for your wife. I think type A is the right formula. Keep up the pressure. By the way, Cleveland does a great job keeping you informed during the surgery. My wife actually talked to Cosgrove over the phone after he was done with me. He was informative and straightforward. He is not the guy who is going to make you feel warm all over (at least that is what I heard), but his staff is very professional and much more friendly. I enjoyed them during recovery, since I never saw Cosgrove. Good luck to you and Jill.