Does surgeon's skill and conviction on repair vs replacement factor in?

[Melanie Gaines]

Hi Everyone:

Honestly, reading your comments has brought tears to my eyes. I feel so alone with this and am doing tons of research. I tend to believe that the surgeon's skill is a huge predictor of failure or success in repair. I want to make sure that the surgeon I choose will do everything possible to fix the valve. If it's not fixable then at least I gave it the best chance I could and I won't have regrets later. I have heard there are many surgeons that don't feel confident about fixing a severely redundant tissue valve like mine and when they see it will decide it is much easier for them to replace it, rather than even try to fix it.

The first surgeon I spoke with gave the valve a 70% success rate or at least that's what he told me. My cardiologist said that he told her it was unlikely that he could fix it. Dr. Gammie, out of Baltimore, looks at the same TEE and feels confident he can fix it. Now Dr. Chawla, out of Hartford CT, was the first surgeon and according to my doctor he is one of the best valve guys in the state - Note: Connecticut is a very small state. He has been doing various valve surgeries for probably 20 years +, however, I still have to wonder if the art of repair is something that requires a speciality and a strong belief that would cause one doctor to attempt it more than another. I just don't know. Dr. Gammie is much younger, but seems to believe more in preservation of the valve, whenever possible.

Does anyone know of any good surgeons in Connecticut that have a high repair rate? Where could I obtain this information? Also, is it a good idea to consult with another cardiologist. My current doctor says the condition is serious with a chance of sudden death, however, the first surgeon I spoke with didn't seem as concerned.

Taking Coumadine for the rest of my life scares me in that I have other drugs that I take daily, and honestly try as I may, there are times when I forget to take one or the other. Also I tend to run anemic and bruise very easily. I will often find large bad bruises on my legs from no apparent reason. I don't know how a blood thinner would affect that.

Once again, thank you all so much. I need to be absolutely positive before I take any action that I am doing the right thing, so I appreciate all the feedback greatly,

Melanie

 

[TomS]

CT Doc's

CT Doc's

Melanie,
I am also in CT, but chose NY for my aortic valve replacement three weeks ago. The usual list in CT are Yale, St. Vincents and St, Rafaei's. Unfortunately, when I did the research on surgeons it pointed to number of operations = success rate, and the NY hospitals have a lot more volume. I went to Cornell on 68th street. My surgeon does about 250 valve replacements per year with a 0.7% mortality rate. If you want names of Doc's in NY, let me know.
Best of luck,
Tom

 

[catwoman]

Melanie:

Damage to the valve and experience of the surgeon are probably the best predictors of repair success.

My surgeon told me pre-op he was "90%" sure he could repair the valve. He did attempt a repair, but it wasn't successful. The chordae were shot, the leaflets too huge to repair. The repair wasn't working, according to a TEE. So, he did as I had asked -- replaced the valve with a St. Jude.

Bruises are old hat to me, but I haven't particularly noticed more of them since my surgery. Warfarin is the only Rx I take daily.

Many people facing OHS have some apprenhension and anxiety. However, most, if not all, reach a peace before their surgery. I had to "fast-forward" my mind to post-op: 1 week, 1 month, 2 months, going back to work, etc. That helped immensely.
You do recover and your life does become normal again.

 

[Ross]

Go for the repair. If you can keep your native valve, that is better then having it replaced. However, if it cannot be repaired, make a choice on what valve you want, tissue or mechanical. Coumadin should not scare you in anyway. You have to have are to breath to survive, so you breathe and don't forget it, same with Coumadin. If you want to live, it will be the foremost thing on your mind until you take it. We've all goofed at one time or another, were human, but it's not that big of deal to worry over it.

If you truly want a repair, get a second opinion with Dr. Cosgrove at the Cleveland Clinic. If it's not repairable, he'll tell you so, but there are darn few that he cannot fix. I know traveling isn't in your plans, but it's your life your taking about, not a simple vacation.

 

[loretta]

Surgery

Surgery

Melanie, I believe I wrote you once before. In my opinion I would go for a 2nd opinion. I don't know how far you are from Manhattan, however, I do believe If i lived in CT. I would make the trip down to Manhattan. NYU. COrnell, & Columbia are the best around. I had my valve replaced at NYU Med. Cent. My surgeon was/is Aubrey Galloway. I think he had said he does about 250 a year. You need to go with the drs. that have the most experience doing these surgeries. Also at the time of my surgery I was not on Medicare & my ins. & the hospt. handled it great. Infact the hospital really did a great job for billing my ins. good luck Loretta

 

[Phyllis]

Hi Melanie,
I am in New London and I want you to know that after much research, appointments with a cardiologist in Guilford who suggested a surgeon at Yale, and an appt. with that surgeon, we decided to get a second opinion from Dr. Pat O'Gara at Brigham and Womans in Boston. We had researched the surgeons and knew that we wanted either Dr. Cohn at Brigham or Cleveland Clinic. Brigham was the easier commute and so we ended up there and were very happy with our experience. Dick now goes to the local cardiology group for yearly check-ups, but we would be back at Brigham in a second if any problems arose. The local group tends to push Yale, St. Raphael's and Vincent, but we think you are better off elsewhere. You can check out the best surgeons and hospitals at http://www.usnews.com/usnews/nycu/health/hosptl/tophosp.htm
Please also feel free to private message me if we can be of further help.

 

[McCln]

Melanie,
It sounds likes the odds are if the valce is unrepairable, replacement is possilble. My surgeon was unaware of the condition of the valve of mine till he went in and saw it. There are a lot of factors that will change the situation or repair to replacement. The foremost, of course the the condition the valve in question during surgery. That is why most will not give a 100% guarentee of repair, there is the chance of having to replace. And replacements are many and coumadin is not so bad. It if have to go the coumadin route, just get with the doctor with the other meds to make sure of interaction possbilities. Be sure to get good updated information. The more you know, the better the look at surgery will be better. You will be fine, just relax and research as much as you can and talk to the doctors about anything you have questions about. You will get what information you need. Take care and try to relax a bit. Knowledge is a comfort.

 

[Christina L]

Melanie,

Melanie,

I agree with what others are telling you on this particular thread - go to New York to see one of the surgeons there.

My mitral valve was pretty messed up - both leaflets being redundant and prolapsed. Hence, my cardiologist here in Colorado would not recommend that I see ANY surgeon in Colorado. He said for a valve like mine, Cleveland was the place to go, specifically to have Dr. Cosgrove do the surgery.

Also I was told you not only want a gifted, skilled surgeon, but he/she should perform many mitral valve surgeries a year - you want to look at the statistics of success rate of the valve repairs and also I was told that it is the OVERALL facility that the surgeon works out of that is important also.

The Cleveland Clinic has seen it ALL, done it ALL. Nothing they see surprises them. The same would be true of some hospitals in New York.

I was reading my transcripted surgical report just the other day (while cleaning up my home office of excess paper!) and it read that they opened me up (that's so scary to think about still) and THEN decided "yep, we are going to attempt this repair as we think it is possible." So they did the repair and so far it has been successful.

With your mitral valve in the shape it is (it sounds like mine) I wouldn't mess around with a smaller hospital, no matter how good the surgeon is. Go with a surgeon who performs many, many of these repairs a year. It is not pleasant to be away from your home during this very difficult time in your life, but it can be done.

Good luck with your decision! You will make the right choice for you.

Christina L.

 

[Melanie Gaines]

Where do you get the hospital statistics?

Where do you get the hospital statistics?

Everyone is so helpful. How do you obtain all these statistics?

Thanks,
melanie

 

[Bill Hall]

Melanie - I also have a mitral valve repair from Dr. Cosgrove. I did some research prior to surgery and his name came up in two different places. Dr. Cosgrove also tried to repair my aortic valve, but failed twice, so I ended up with a homograft in the aortic position. I was in surgery for 11 hours and on the pump for more than 4 hours, and I didn't expect that negative.
When you find a surgeon's name, there is a great search mechanism on this site. Just go to "search" and type in the doctors name. The searched words come up in RED. Easy to use.
Bill

 

[tobagotwo]

If you can get Dr. Cosgrove's time, he's great, but we're not the only ones who know about him, and most who go there hoping to see him wind up with other doctors at CCF instead. Wonderful surgeons, I'm sure, but if you're not getting one of the Big Kahunas, there are equally skilled surgeons more local to you.

Either Mass General or Brigham and Womens has made the top five rated OHS centers in the country for years, and the other is always in the top ten. Their reputations are very close to a par with the Cleveland Clinic, and is still just an afternoon's ride for you. The New York hospitals generally line up close behind them in the rankings. Notables in NYC would include Dr. Stelzer, but his specialty is Ross Procedures.

I would seriously consider looking into B&W as Phyllis suggested. I would count experience as the number one criterion for repairs. Look for a specialist.

Best wishes,

 

[Marty]

Melanie, I had confidence my surgeon would use his best judgement. He said he could have repaired my badly damaged valve, but he also noted that if he did ,I would be back on his table in two to three years. He then replaced with a mechanical primarily because some tissue valves at that time needed to be replaced in seven to ten years. Coumadin has not been much of a problem for me, but it has a lot of negatives associated with it. Tissue valves are much improved of late. Ask your surgeon what the latest durability figures are. My advice is to have a frank discussion about all this with your surgeon and then trust his/her judgement to repair or replace.In my opinion NY has heart surgeons second to none. I think you will do well.

 

[weekycat]

Go with the guy who's 90% sure!

Go with the guy who's 90% sure!

Melanie,

My surgeon said he was 90 or 95% sure (I can't remember exactly) that he could repair my mitral valve...and he did.

There's a lot to be said for self-confidence, or maybe perfectionism?? This is what he said, "I'm almost certain I can repair it because, well...because I usually can." I thought that sounded a little cocky at first, but then I decided I liked his can-do attitude.

I also found out prior to surgery that this particular surgeon's patients rarely needed blood transfusions. At one point his partner was going to recommend one, but my surgeon said no. It probably would have made me feel a little less tired at the time, but I'm glad I didn't have that extra added worry.

Just make sure you find a surgeon that you are comfortable with. Also, since I had only found this site 3 days prior to my surgery...I really didn't know anything. My surgeon had told me if he wasn't able to repair, he would use a mechanical because of my age, (43). I didn't know that I even had a choice in the matter.

As far as the coumadin...I did need to be on it for a short time, even with the repair, but 8 weeks was bearable, and it was also enough to make me thankful that I don't have to be on it for life. Hang in there!