Mitral Valve Repair vs. Replacement

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I have been diagnosed with mitral valve regurgitation of 3+ and have had AF for over ten years.
My goal is to have a mitral valve repair. I have been told that repairs are better for the long term health of the hear (not a hugely better difference, but better). I have also been told that my case is not difficult and that the outcome looks good. I was told this by the head of Cardiac Surgery at Barnes Hospital in St. Louis, certainly a very qualified surgeon.
I was scheduled for an ablation at the Cleveland Clinic before the valve figured into the equation. The EP doctor there said that they are very advanced there in the field of mitral valve repair, able to fix things others cannot.
My dilemma is that I hear that the extent of damage is often more than anticipated once they view it during surgery. I want the best chance of repair.
I cannot decide which is best - to travel to Cleveland and endure the discomfort and difficulty of travel following open heart surgery or to trust that the comfort of home town surgery would be just fine.
I'm still gathering input from a lot of sources, but wonder if anyone on this site has some helpful advice.
Thanks all,
Judy

 

[bvdr]

Hi Judy,

You might find us pretty well divided on large med. center vs hometown care. My own opinion is that if you want the best chance of a repair then go to Cleveland clinic or one of the other top rated valve specialty centers.

Your follow-up care can all be "hometown".

 

[Ross]

Quite a few here have been repaired at Cleveland by Doctor Cosgrove. He can do what so many others say is next to impossible.

I'm not saying that it couldn't be done in your hometown, but if you go to Cleveland, your in the best possible place you can be for this type of surgery.

Some of the members
Christina L-Not quite a month ago.
Melissa M-3 months out ? now.
JenniferO 3 years ago.
Many others.

 

[MelissaM]

Hi Judy,

Welcome to the forums! I would suggest that you get two opinions - one from your local doc and one from the CCF. They should be able tell you percent chance of doing a successful repair. The first opinion I got gave me a 60-70% chance doing a successful repair, the second doc said 80-90% chance and CCF said 95%+ chance of repair. Soo. . .I went with CCF. If your local doc can give you a percentage equal to CCF, then by all means, stay local. If not, then you have to weigh out the pros and cons. While docs are sometimes surprised by what they see once they have you open, most should be able to get a pretty good idea of what is going on from a TEE exam.

Hope that helps!

Melissa

 

[[email protected]]

Thanks, everyone,
I like the idea of asking percents. That will help put a number into the equation.

 

[HFK]

DR Colvin at NYU That is in New York , he is also world renowned for mitral valve repair, I would also check him out if your thinking of going out of state. HFK

 

[BillCobit]

I vote Cleveland

I vote Cleveland

Hi Judy -

I vote Cleveland

Local dox said my mitral valve was unrepairable. Cleveland doc (Gilllinov) said he was 80% certain he could fix it. Turns out the valve was worse off than the echo indicated (leaflet perforation). He fixed it anyway. No more leak, no arrhythmia, no heart drugs -- and all the cycling and triathlon I want. I'm a HUGE Cleveland fan! BTW, I had to travel to get there. Not convenient, but not that big of deal in the scheme of things.

Best of luck whatever you decide.

Bill

 

[Christian]

This ain't easy coming from a Pittsburgh Steelers fan.... Go to Cleveland. Mitral valve repair procedures require top-notch surgeons, and Cleveland has them. So does the Mayo Clinic if that's nearby, and I believe Massachusetts General, Duke, and some facilities in California.

The only way I'd stay local for a repair procedure is if (1) your repair is simple (isolated posterior leaflet prolapse) and (2) you have a doctor nearby that's doing around 100 repair procedures per year with a minimal redo rate.

 

[Christina L]

I vote for Cleveland also. I am a bit biased, as I had my mitral valve repaired there four weeks ago. The traveling home was no big deal, as long as you have wheelchairs handy and people to carry everything for you and watch out for you. We stayed in Cleveland another three days after I was discharged, so I could have a little more healing time before we attempted the flight home to Colorado.

My mitral valve had both anterior and posterior prolapse, but no ruptured chordae or anything like that, but it was considered a complicated repair. They did a quadrangular resection and fitted me with a Cosgrove ring around the mitral annulus. My cardiologist here at home gets a HUGE grin on his face when he listens to my heart - says he cannot hear a murmur at all. He is the one who sent me to Cleveland, as I wanted to try for a repair also. My cardiologist thinks Dr. Cosgrove walks on water.

A repair is not a sure thing - as we on this board know - they can fail over the years - but I am running with the statement my cardiologist made the other day - that he thinks my repair will last my lifetime.

Dr. Delos Cosgrove at Cleveland was my surgeon. He is a wizard in the repair of mitral valves, but he has trained many other surgeons who work with him on his techniques.

The final decision is yours and there are a lot of expert mitral valve surgeons in the country. Another thing my cardiologist told me is that you want to take into consideration the whole facility, not just the surgeon and Cleveland Heart Clinic/Hospital sees hundreds/thousands of heart patients every year in their facility. The staff surrounding me knew exactly what they were doing, from the cardiologists who saw me in the hospital down to the LPNs. It definitely is not a touchy-feely place, but very efficient and I felt safe there.

Best of luck in your decision.
Christina L
Colorado

 

[BillCobit]

No referral needed

No referral needed

Judy -

In case you were wondering, you don't need a referral to be accepted by Cleveland. I got ZERO help from my local docs - but didn't need it. I just followed the instructions on the Cleveland Clinic web site. When I talked to the scheduling nurse, she recommended I mail a copy of my most recent echo tape. The surgeon evaluated it it and personally called me back a few days after I Fed-exed it. I had the surgery about 2 months later. All the pre-op exams were scheduled in the 3 days immediately preceding surgery - no need for multiple trips.

Clevland is used to out of town & country patients. They know the drill well, provide a lot of assistance with travel and lodging planning, and take GREAT care of patients.

http://www.clevelandclinic.org/heartcenter/pub/appointment/default.asp

 

[McCln]

Eileen

Eileen

If you are wondering if it is better to repair than to replace, repair is good if the heart is in good shape. Otherwise, they will not replace unless it is really needed. Get second opinion, or third. You need to get an informed opinions to make a good choice. A good doctor you feel comfortable will help also. It is never easy looking towards any kind of surgery. Take care and lots of luck on what you decide to do. Get informed.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[Jamjude]

Wish I Had Went To Cleveland

Wish I Had Went To Cleveland

I got three different opinions, in Indiana. Chose what I thought was the best. They forgot to put something together right. Almost died. That second trip to sergury was the worst thing! I'm still not well, keep having setbacks, after three months! Choose wisely people. Sad part in my In-laws live near Cleveland. I find myself wondering how, or why I believed in the Dr. I chose. TC. All good luck.

 

[MelissaM]

Caveat emptor - let the buyer beware. In my opinion, there is nary a surgeon out there that doesn't come with high marks. The first surgeon that I went to was "the best" because he had studied under DeBakey at the Texas Heart Institute. Further investigation revealed that his specialty was saving people in emergency situations - a totally different specialty than valve repair. The second surgeon was also "the best" but totally rejected the validity of minimally invasive surgeon. My third surgeon was "the best" according to many independent sources.

I would strongly encourage those considering this surgery to let a fellow doctor's recommendation be only one factor in your consideration of a surgeon and/or hospital. Try and get some concrete information (# of surgeries done, what he considers to be his specialty, hospital reputation, other patient's experiences, etc, etc) and THEN factor in "the best" comments. You might be surprised how relative that comment is.

 

[Andrea]

Cleveland

Cleveland

I would vote for Cleveland not out of personal experience but because I have heard such wonderful things about Dr. Cosgrove. I would feel so much better knowing that with a surgery like this, that I was in the best care possible.

Just my thoughts

Good luck to you!

 

[Georgia]

I vote Cleveland, too

I vote Cleveland, too

Who'd-a thunk Cleveland was so darned popular???

If you have the option of going there, go.

I had a mitral valve repair that didn't work (fortunately it didn't work from the get-go so the replacement was done immediately and I didn't need two surgeries). I'll never know if the repair didn't work because the valve was irreparable or because I didn't have a surgeon with the skills of Dr. Cosgrove.

It's not something worth worrying about - I'm ticking along and I feel good and had a good recovery - it's just that there aren't many surgeons doing much of this work except in large metropolitan areas and this here isn't one of them.

 

[Marty]

Re: Cleveland

Re: Cleveland

These are wonderful testimonials to Cleveland and Dr. Cosgrove. I have two friends who had repairs by him. Both are now doing well. Both had post op problems. One with afib and then mental depression. The other with severe post op problems who barely avoided reoperation by getting a second opinion with another CC doctor who saved his life.
Neither of these fellows saw Dr. Cosgrove post op. Thats the primary reason I decided to stay home at my little county hospital
( they do 2000 open hearts/yr)and it worked out. Also Dr. Alain Carpentier who introduced the "French Correction" mitral valve repair has visited our place a half dozen times and my surgeon visited him in Paris along with an entire surgical team. He could have tried to repair my valve, but said if he did he would guarantee that I would be back for reop in side two years. I trust that opinion. Could Dr. Cosgrove have done a successful repair? We will never know. But I have grown to love my St. Jude mechanical!

 

[[email protected]]

I continue to be impressed with everyone's opinion and desire to help. I meet with Dr. Damiano at Barnes-Jewish Hospital here in St. Louis on Tuesday. I am leaning toward staying here and having him do the job, but that Cleveland Clinic and its terrific reputation still beckons!
Thanks to all for your input.

 

[Bob]

Goodgrief, Barnes hospital is one of the best hospitals in the USA. That is a no brainer. Good hospital and home territory is the way to go. No Bad thoughts about Cleveland but there are other experts in the country. Now if your live in Dry gulch, Montana your local hospital might not be the place to go and its resident cardiologist,Tobacco Red might not be up on the latest but Barnes is and will be.

 

[HFK]

Hi Marty,

CC is a good place but I think people get wrong ideas about repair's, As you know and I know Carpentier is the GODFATHER of MV& REPAIRS he has trained some of the best. Interestingly enough my TEE is in his hands now for review and his opion, a Dr I saw here in Mlps. Just got back from Paris, he was moderating at a live conference where Carpentir did 5 MV repairs, he is 69 years old. Dr Northrup had talked to him about my whole situation ,and then offered to review my tape. But I really don't think it could be repaired,I would be interested in the longevity, I think some Dr's get carried away with repairs, it's like they are bound and determined to repair it,and then several years later it fails. It such a hard , scary and frightening decision. Cosgrove said it could be possibly repaired? I guess you have to go with your gut feeling. HFK

 

[Marty]

Who do you trust?

Who do you trust?

HFK, It all comes down to trust. I decided to stay home and got five good years so far and expect more. I'm 77 now and my surgeon opted for the mechanical valve because he didn't want to take the chance with a tissue valve and having to re-operate when I was 80 something. Do what your heart tells you to do.