mitral valve replacement or repair

[barbaranna]

I am writing this because it concerns my daughter who is 37, single Mom, with 4 children ranging from 5 to 13.Younger she had found out she had a mitral valve prolapse with mild regurgitation. She has really never had any problems with it except sometimes palpitations. Two years ago she went into cardiac arrest and survived. they say it had nothing to do with the heart but with low potassium.She ended up having a defibrillator in the breast tissue in case it ever happened again. Now she has been going for echo's and they told her that she would need the valve surgery somewhere down the road. The last echo she had showed it had gotten worse and now she needs the surgery.She is having a test done some type of endoscopy to go down by the heart and see if it can be replaced or repaired. Could anyone explain that test to me? If it has to be replaced she really doesn't want the mechanical one because they say you can hear the ticking and the meds you have to take for the rest of your life.She's self conscious probably because she is young and just started having a relationship and doesn't want the scarring or feeling of having someone hear her heart all the time.They say that if it needs to be repaired she could stay in this location where is Buffalo or Rochester and if it needs to be replaced she would have to travel to Cleveland. We are overwhelmed with all this.I worry about her making it through the surgery. I would have to go with her and am not financially off staying in a hotel for a lengthy time with expenses. Has anyone experienced any of this so I can get some light on the situation. Step by step to ease my mind and her's?

 

[Marcia58]

Has anyone experienced any of this so I can get some light on the situation. Step by step to ease my mind and her's?

I had a minimally invasive mitral valve repair on 3/26/09. I'll give you some of my answers to start. I'm sure others will jump in. Ask away--that's why we're here!

She is having a test done some type of endoscopy to go down by the heart and see if it can be replaced or repaired. Could anyone explain that test to me?

This sounds like she'll be having a TEE (trans-esophageal echocardiogram). With a TEE, she'll be given an IV sedative and some "stuff" to numb her throat. Then, they'll have her swallow an ultrasound transducer about the size of a man's thumb (on a cable). This will do a heart echo of her heart from the "back side" which let's them see her heart from a different angle, and without all the skin, muscle, bone in the way. It's usually outpatient, takes a couple hours, max, and is uncomfortable but not painful.

If it has to be replaced she really doesn't want the mechanical one because they say you can hear the ticking and the meds you have to take for the rest of your life.

At 37, if she goes with a tissue valve, the odds are good that she'll need another valve replacement sometime in the future.

She's self conscious probably because she is young and just started having a relationship and doesn't want the scarring...

Has she checked into robotic surgery or other minimally invasive surgery (like a mini-thoracotomy)? Both of those have much less noticeable scars.

I would have to go with her and am not financially off staying in a hotel for a lengthy time with expenses.

Whatever hospital you go to, check about a hospitality house for patients' family. Ask, too, about getting a roll-away cot set up for you in your daughter's room.

Hope this has helped some. I survived, and she can too! In fact, I feel the best I have in years, and in a couple weeks, I'm going to Washington, DC with my son's 8th grade class!

Praying for a "repair" and not a "replace"...

Marcia

 

[Adrienne]

They say that if it needs to be repaired she could stay in this location where is Buffalo or Rochester and if it needs to be replaced she would have to travel to Cleveland.

Are you sure they didn't say the opposite. For a repair (which I had), it is very important to have a very experienced surgeon who has done a lot of repairs. I have read that about 90% of people needing mitral valve surgery are candidates for a repair if the surgeon is experienced in repair.

 

[WayneGM]

I had a repair and echo Adrienne on getting somebody experienced. If they can save the natural valve, that's the way to go. As for mechanical vs. tissue, suffice it to say there's pros and cons to each. It is true though that if she does go tissue at her age, it is likely she'll need another replacement down the road. Unfortunately they don't last forever. Best wishes and good luck to her.

 

[Jkm7]

I agree that, of course, skill level of the surgeon is critical for any heart valve surgery, experience and skill is vital for valve repair. My Mass General surgeon (one of the top five heart centers in U.S.) attempted repair on me but knew it would not be a good one and proceeded to replace my valve with tissue valve, as we had agreed in advance he would do if necessary. My worst nightmare was a failed repair.

This is very survivable surgery and in an otherwise healthy, young woman, the chances of anything less than full success is miniscule. Every reason for you to think she'll do just fine.

The TEE, when performed by an experienced cardiologist is not a difficult test to endure. I felt nothing and had absolutely no pain or discomfort after. From start to finish was about 45 minutes and it gives very useful info. Most surgeons insist upon this test along with a cardiac cath before surgery.

I see you list New York as home. There are some very fine heart centers in New York..... are you very far from NYC?

I had two OHS in four years and am doing fine! Your daughter should do great, as well.

Ask all your questions. There is almost always at least one person here who has experienced whatever it is that is being asked.

Best wishes and please know we are happy to help in any and every way we can. Only those of us who have walked this walk can truly understand.

 

[BillCobit]

They say that if it needs to be repaired she could stay in this location where is Buffalo or Rochester and if it needs to be replaced she would have to travel to Cleveland.

That part sounds backward. Repair requires greater skill, and Cleveland Clinic is widely regarded as the best place to get a repair in the US. I am very pleased with my MV repair; I am drug and complication free, and I enjoy a very active lifestyle. I was intimidated by the prospect of traveling for heart surgery, but I'm glad that didn't influence my decision to go to the Cleveland Clinic. I highly recommend them. BTW - the local surgeon I saw concluded (based on TEE) that my valve wasn't repairable, and would require replacement. I didn't like that answer, so I went to Cleveland for a second opinion. I had a successful repair that has been problem free for nearly 8 years now.

Best wishes to your daughter.

 

[halleyg]

After she has the TEE you will know more about what needs to be done and can go from there... I had my mitral valve replaced at 38, so close to your daughters age. IF she has to have a mechanical valve, yes, you can hear it ticking but not all the time. Mine isn't very loud. I mostly just hear it when it's quiet and I'm alone or in the bed or something. It isn't so loud that it is going to bother someone else, and I've gotten used to mine, don't really pay it much attention most of the time. I also wanted to let you know that I had laser treatments on my scar, which my dermatologist did. If you look on my profile page you can see a photo of me with my scar exposed and can't hardly see it. So there are options there... most importantly she'll get fixed up and live a long, healthy life! I know it's hard to go through, even more so when you have young kids (I do, too) - wishing you both the best.

 

[Mimi]

I had OHS at the age of 34 for a mitral valve replacement. Before surgery I had a TEE (trans-esophageal echocardiogram), although in Australia we call it a TOE. I fell asleep during the procedure so I experience no pain.

In regards to repair or replacement my surgeon tried for a repair, however it was not possible so he replaced my valve with a mechanical valve. I believe that most surgeons opt for repair before replacement. Therefore, a surgeon must discuss each option with the patient before surgery. In my case, the severity of the leaking valve was too great and I had a replacement valve.

Before OHS my surgeon made it very clear that he would only replace the valve with a mechanical valve and that the tissue valve was not an option in my case because at the time he feared that I would struggle to make it through one surgery. However, I know this surgeon has replaced many valves including tissue, mechanical and even a cadaver valve.

The thing I've learnt about this experience was that each patient has their own specific medical issues and the medical advisors will instruct you accordingly.

If you have trouble understanding or accepting what the medical staff have stated then you need to ask why? That's what I did when the surgeon said mechanical and not tissue! Usually, they have a good reason for their recommendations.

Finally, I will have to take medication such as warafin for the rest of my life. It's not that bad. I've only forgotten to take it twice in 2 years. In regards, to the scar I'm still getting use to it, but no one cares except me. Most people tell me that it's just a scar and that it does detract away from the person.

Best of luck. Mimi

 

[Kristian]

My story is similar. I went into pre-surgery consults hoping for repair. My surgeon is quite experienced in this area, but I discovered that my aortic valve was probably not repairable. That meant at least one mechanical valve (I am 35 and would like to avoid multiple OHS). I gave my blessing for Dr Sundt to repair my Mitral, but about an hour into the repair he discovered additional damage to the valve and so he cut it out, per my request.

As for time in the hospital, your daughter will be able to leave in about a week and, while her stamina will be reduced for a bit, she'll likely feel great and will be able to walk around! She's young and should recover quite quickly. They say that pain is a bit higher for OHS in younger patients but I found it quite manageable. If insurance covers it and she can get there, go to Cleveland. I was insistent on getting mine done at the Mayo (another top facility) and was so glad to. Seems like there are many folks here who have gone to Cleveland, and she won't be disappointed.

 

[catwoman]

Barbaranna:

New York-Presbyterian is ranked #7 for cardiology, according to U.S. News & World Reports.

My surgeon tried to repair my valve, but it wasn't a go for me. So he put in a mechanical (my choice for Plan B). I had a full sternotomy.

My husband had a mitral valve repair 2 years ago and we found a surgeon in Dallas who's operated on quite a few other members of this website, and I was able to talk to/e-mail several about their MV repairs. So John chose William Ryan for his surgeon. His incision is right under the right breast (a right thoracotomy), and it has healed very nicely. John's cardiologist has been very impressed with how well the incision looks.

Dr. Ryan told us that not everyone is a candidate for a thoracotomy, such as large-breasted women or overweight people.