New Member

[Cooper]

Hi Everyone,

I am new and so thankful I found your forum.

My husband is the reason I am here. He is 42 yrs old and has a congenital MVP w/regurgitation. We have followed his condition for many years and were told in January that he needed to consider surgery per his last Echo and a follow-up TEE (sorry, I don't have his specific numbers with me to share at this time). Since January we have seen three surgeons. The consensus is that the has a complicated valve because the deterioration is posterior and anterior. However, he has a good chance of repair (90%). My husband is essentially asymptomatic but his heart holter results showed some atrial fibrillation (not chronic). He was told not to wait.

How do you decide on a surgeon? Specifically, we're deciding between two. Both surgeons do a lot of repairs/replacement and both are at volume facilities (NY Presbyterian and NYU Medical Center). The main difference is that one surgeon does minimally invasive and the other would do it the original way through the breastbone. The surgeon that does it through the breastbone told us that he would not recommend minimally invasive for my husband because his valve is complicated. The other surgeon says minimally invasive would not be a problem. Minimally invasive is very appealing but, above all, my husband and I want the best result regardess of incision.

Can anyone offer advice on how to decide and share your experience on both procedures (minimally invasive vs. breastbone)? Also, is there anything else I should be asking, considering, etc.... Any advice is truly appreciated.

Thank you,

Cooper

 

[gijanet]

My gut level instinct..........

My gut level instinct..........

is to get a third (or fourth) opinion. You said that y'all have seen three surgeons - what did the third one recommend?

I'm a firm believer in seeking out additional opinions when you get conflicting surgical options. We have sought out numerous opinions for our daughter. I realize that our additional opinions were at no expense, and this will probably not be the case for you. If you can afford it or your insurance will cover it, though, I would strongly recommend that you go this route............for peace of mind, if nothing else.

I'm sure some of the adult valvers will be on here soon to share their expertise with you. Good luck, God bless, and please keep us posted. Many hugs. Janet

 

[Cooper]

Janet,

Thank you for the prompt reply. We did get three opinions. The very first surgeon said my husband's valve was not repairable. Specifically, he did not think the repair would hold long-term and recommended a mechanical valve replacement. What we learned from seeking other opinions is that his valve is more complicated (not just posterior; also anterior) BUT it definitely looks to be repairable. Thus, we haven't considered the first surgeon in our decision.

The other two surgeons gave him a 90% and 99% chance of repair. Both said they would not know for sure until surgery, and they would only repair his valve if they thought it would last long-term.

Insurance will pay for three opinions but we are not opposed to paying out of pocket for a fourth or fifth. So, maybe we should consider this.....

Thank you!

Cooper

 

[geebee]

Welcome to VR.com.

First off, you need to be prepared that the valve may need to be replaced. My surgeon was totally convinced my mitral valve could be repaired and was shocked when he got in and realized how bad it was. Not trying to scare you, just stating facts.

I do not know if the minimally invasive surgery gives the surgeon the visibility he will need when working with a mitral valve. My understanding is the mitral valve is a little "out of the way". Add to that the complication the surgeon mentioned and I would worry about it.

However, not going through the sterum would be highly desirable.

I would consider one more opinion just to be comfortable. It may be that there is no need to open the sternum in which case recovery would be a whole lot easier. I would just want the type of opening that gave the surgeon the best chance of doing things properly.

Best of luck and please keep us posted.

 

[Yaps]

welcome

welcome

Im with Geebee, my surgeons didnt know all they were facing until they were in there..wish him a safe surgery and rapid recovery.Love Yaps

 

[Nancy]

My husband has had two valve surgeries through the sternum and the last one through the side. The initial recovery (one-two weeks) with the HeartPort (side) surgery was a little easier than the sternum by several days. The additional recovery time (6-8 weeks) was about the same.

No bone healing was a plus, but the side was pretty beat up, and there is a groin incision to deal with.

Always have in the back of your minds that the final decision on what is possible with your husband's situation will happen when they take a good inside look.

welcome to the site.

 

[gadgetman]

Welcome to the site. Here you will find many recommendations and comments from people that have been there or are looking "forward" to surgery.

When I went in repair of my Mitral Valve was not even discussed based on what all my exams showed. I was asked to choose my valve and go for it. I had the "full frontal" surgery. I had always hoped (when I was only facing by-pass surgery) that I could have minimally invasive surgery but because everything pointed to a very worn out heart, they didn't even consider it. Guess they wanted plenty of room to work .

It is sometimes useful to get several "opinions" but remember that surgeons really don't know what they are facing until they get their hands in there. Because my Cardio (and life preserver) for 13 years "strongly" recommended my Surgeon, I trusted him and went in eyes open.

Good luck on the pending surgery, whatever they decide. Prayers and good thoughts are coming y'alls way on your surgeon selection and pending surgery.

May God Bless,

Danny

 

[Karlynn]

I would also echo GeeBee's remarks. One thing I would add is that they give you a pretty serious guarantee that the repair would last a good 10 years, if they repair. Obviously that can't give you a 100% and it's a guess, but with the way his valve sounds, I'm not too secure in the ability to repair. Just my humble opinion, I'm certainly not a surgeon.

I was another one who's valve was much worse than they anticipated before they go in and took a look. My valve was so deteriorated, I ended up with one of the largest mechanical replacements. That was 13.5 years ago and life is good.

Best wishes as you and your husband make the decisions.

 

[bvdr]

Hi, welcome to this forum. I had my mitral valve replaced via a heartport access. The incision is across my lower right breast. I think a surgeon who is highly experienced in minimally invasive type incisions and procedures is very comfortable working in those conditions. He knows how to manuever around the equipment to gain the visibility required. A surgeon who works mainly though the traditional opened sternum is definitly out of his comfort zone in a minimally invasive setting. I was warned ahead of time that if it became apparent during surgery that I would need a double valve replacement or any vessel bypasses then he would at that time also open my chest.

The bypass pump time was longer for me than what would have normally been expected with an open chest incision. I think that is pretty typical for most patients having a heartport procedure. It is a factor to consider.

I have gone back and forth about if I would go that route again. Today the vote would probably be for an open chest incision. I had some scarring to my right lung, supposedly from the surgery, and on days when I feel short of breath I second guess my decision. However, on good days I never even think about it.

I also agree that I've never heard of an insurance company voicing an opinion about the type of valve a patient gets. That is between you(your husband) and the surgeon.

.....did I tell you that I think you are a very good wife?

 

[Christina L]

I had my mitral valve

I had my mitral valve

repaired over one year ago by Dr. Delos Cosgrove at the Cleveland Clinic. We live in Colorado and it was my cardiologist who recommended Dr. Cosgrove. My mitral valve had both anterior and posterior leaflet prolapse, very redundant and flailed leaflets and some thickening. None of my chordae were broken. I also was not in a-fib (and still am not). My cardio felt that Dr. Cosgove was my best bet for a repair - other surgeons told me they "thought" they could repair it - couldn't guarantee and Cosgrove looked at my TEE and said, I CAN repair it. I felt confident in his abilities.

I did a lot of reading before my surgery and I did read that as soon as a person starts to go into a-fib, to have the surgery done because there is a good chance (if the a-fib hasn't been going on over a few months) that the a-fib will stop after the surgery.

Dr. Cosgrove did a minimally invasive surgery on me. He is a wizard, but I know that NYU has some wizards there also (and many other places in the country, but many consider Cosgrove the best). I was told that I had about a 90-95% chance of the valve repair still being viable at ten years out. My cardiologist, upon listening to my heart, said that he believes my repair will last my lifetime. I am taking that statement and running with it. I get scared at times thinking about going through the surgery again, but I live one day at a time. I am still here at 45 and have had a wonderful life - I can't ask for more.

Also, I have a mitral annulus ring put around my mitral valve - I think this helps the repair to hold.

If you have any more questions for me, please PM me!!!

You are a good wife, as Betty said, and I wish your husband and you all the best through this coming ordeal. Just put one foot in front of the other and before you know it, it will all be behind you and your husband will be feeling great with his new repaired valve.

P.S. As of my last echo in December, per my cardiologist there is not a hint of regurgitation of my mitral valve on the echo and he can hear absolutely no murmur with the stethoscope. So far - so good!

Christina L.

 

[tobagotwo]

If they don't know what they will find, you might consider the split sternum entry more forgiving for the surgeon. If the going gets tough, access saves heart bypass machine time, makes for better vision, and a less cramped workspace.

Most of us did have split sternum, and it seems to heal up pretty well, especially for younger valvers. I believe I would go for this option if it were me, just because it might raise my odds that he can do the repair.

If you can manage to see yet another surgeon, maybe you can feel more confident with one of the choices.

Best wishes,

 

[Christina L]

I think the more

I think the more

experienced and skilled surgeons (such as Cosgrove) don't have any problem with the minimally invasive technique no matter how complicated the repair is.

With your husband's valve situation, it is in his best interest to get the BEST surgeon you can find (no matter where you have to travel) and make that your first priority. Then decide on the minimally invasive or full-sternal incision depending on the surgeon.

Christina L.

 

[Cooper]

Thank you!

Thank you!

Thank you everyone for your advice, supportive words and prompt replies.

We met with my husband's cardiologist today to discuss all three opinions. She explained in more detail all the various procedures used to repair a valve and tried to help us in coming to a decision. She told us that if we decide to go with minimally invasive we should go to either NYU or Cleveland Clinic. They do the most, they've seen it all, and can offer the best possible repair.

Time is critical for my husband and we can't wait to long but we may seek one more opinion. My husband was most comfortable with surgeon #2 at NY Presbyterian. He has a stellar reputation among patients and cardiologist BUT he doesn't offer minimally invasive. Surgeon #3 at NYU also has a good reputation and is said to be one of the best at minimally invasive. It's a tough choice. My husband is a little hesitant about minimally invasive but the benefits are VERY appealing.

We realize that replacement is possibility. With exception to surgeon #1 who just didn't do that many repairs, everyone believes his valve is repairable. He has a bi-lateral prolapse but there is no calcification or other foreseeable problems. I also found out that he has 4-R (make sense?), meaning that his blood is flowing all the back to the wall of the atrium.

So.... any advice on tissue vs. mechanical valve just in case? Big decision....

Thanks again. I'll keep you posted. You guys are great!

Cooper

 

[geebee]

"To tissue or not to tissue, that is the question".
"Mechanical, mechanical, my kingdom for a mechanical".

Sorry - it's late and I am a little punchy

Your husband is in a good place at 42. He can go with a mechanical and pretty much be assured he will never need another surgery (NEVER guaranteed, of course). However, he is then facing a life on coumadin but that is not the horror story some folks would have you believe.

If he goes with a tissue valve, he will need a second surgery probably about the time he is 57 - 62, still young enough to bounce back. But, of course, he is guaranteed a second surgery.

Also, many people who have a tissue valve end up on coumadin anyway for other problems.

I would talk in depth with your ultimate surgeon choice and listen to all the views that will come in. Also, search the forums for "valve choices" and you will find a multitude of discussions.

It does come down to personal choice. If one is not fearful of coumadin, mechanical is a good choice. Others would never take coumadin no matter what.

Best of luck in all your decisions. You are great to be so involved in finding answers.

 

[Cooper]

Hi Gina,

Thanks for your reply.

We thought about valve selection a lot but haven't come to a decision. Surgeon #1 suggested mechanical valve and he's done. Surgeon #2 said your choice and offered facts but no opinion. Surgeon #3 suggested tissue valve. He told us you still have a 3-4% chance of clotting even on Coumadin, and that at 42 yrs-old my husband's odds of having a problem on Coumadin at some point is probable. So, his advice was a tissue valve in order to avoid Coumadin for as long as possible. Now, this is the minimally invasive guy talking so, to him, another surgery in 10-15 years is no big deal.

As you mentioned, there is a chance of him ending up on Coumadin for other problems. So far, he has none but this could change and it would certainly be the pits if he ended up on Coumadin after getting a tissues valve.

I had no idea there were so many valve choices. Do you get to chose the brand? I know surgeon #2 uses St. Jude for mechanical but I don't know what kind of tissue valve he uses. Should we be asking about valve brand? Are there some we should avoid?

Thanks!

Cooper

 

[geebee]

Not familar with tissue valves so I can't address those.

As far as mechanical the St. Jude is a very proven valve. I have read a lot recently about the On-X valve. Apparently there are a few studies that seem to indicate aspirin therapy in lieu of coumadin might be in the future. Carbomedics is also supposed to be a good valve.

I do believe you will have your choice as to brand. The surgeon for my last OHS told me he would use any valve I wanted but he preferred the St. Jude which is what I have had now for almost 11 years. And I have been on coumadin for 24 1/2 years so that is no big deal to me anymore.