minimally invasive versus sternectomy for MV repair for bileaflet prolapse

[sparklette77]

Hello---I am trying to decide between the minimally invasive approach versus the sternectomy approach for a mitral valve repair. I have bileaflet prolapse.

It seems like the doctors that do one or the other really believe in their approach but I am having trouble deciding. Two surgeons did tell me that my valve repair will be complicated because of the bileaflet prolapse and the way it is shaped based on my TEE results but not so complicated that it has never been done before or impossible or anything. Sounds like it is a medium level of complicated! They also said that there is a small chance that the repair fails and that once they get inside me they may have to replace the valve instead of repairing it. (I hate thinking about this possibility but I guess I should get plan b ready since I have the luxury of time to do so).

The sternectomy surgeons say that they have a better view of the heart going in from the chest and this approach won't restrict them in anyway in case there are any complications and that the recovery is better because it is better to cut through bone than muscle. The minimally invasive surgeons said that their view of the valve is fine and sometimes better because the mitral valve is towards the back of your heart and that the outcomes are the same regardless of approach.

I am 31 and would prefer not to have a scar if I don't need one, although I don't think I would want to sacrifice health for cosmetics. I go back and forth each day on what approach but today I am leaning towards the minimally invasive approach for the following reason:

1. If I do need a replacement then I would like a tissue one so I can hopefully have kids in the next decade and the minimally invasive approach would leave my sternum untouched and free for any future ohs I may need.

Has anyone else faced this decision? Does anyone have any thoughts on what I should be considering, whether I am missing something in my analysis, etc. Thanks in advance for your advice!

 

[MaryC]

Hi Sparklette,
I had mitral valve repair via port access, or the minimal invasive approach. I have an approximate 3 inch scar under my right breast. My exerience was excellent. I had discomfort, not pain. Some folks have had issues with pain with minimally invasive surgery. I think pain management is a major area to address, no matter what approach the surgeon uses. My anestiologist had a pain pump on my right side that administered pain medication periodically and in addition, I was taking pain pills. If I had it to do over again I would have the same procedure.

Chris

 

[skeptic49]

Hello Sparklette,

Your post is very interesting and you have an important decision to make. I can't help with info or a personal experience, but I hope that you can get some additional perspectives here on VR.

Best wishes and good luck,

Jim

 

[ALCapshaw2]

It is ALWAYS wise to have a Plan B, just in case Plan A does not work out or is not viable.

It might be worthwhile contacting Dr. Petracek's office at Vanderbilt and see if he would discuss the issue with you over the telephone. As mentioned before, he does 200 Thoracotomies per year with people flying in from all over to avail themselves of his services.

'AL Capshaw'

 

[Smiley2000]

I shared your fears for possible replacement and scar afterwards! We are about the same age and I was more scared about living with the "zip" afterwards as to the op itself. I had the full sternotomy and if I had a choice I would have loved the minimal invasive procedure instead! They don't do the minimal one in S.A.

I was blessed enough that my Surgeon was able to repair my valve and didn't need a replacement. The scar is not so bad (I am now 5 months post-op and I sometimes wear my cleavage-tops and just cover the "zip" with consealer and no one notice it) but I still have pains where they cut my sternum and at some stage I'll have to go back to get some of the wires removed.

If you have the choice and your Surgeon is confident that he can do the repair or replacement through a cut underneath your breast: then go for it.

What ever you decide, we will be here for you when you recover...

 

[ryen0]

davinci

davinci

I don't know if you have access to one in your area, but the davinci surgery for mitral valve repair is pretty amazing. Maybe even worth traveling for. I just say this because you only have to deal with five tiny scars on the right of your chest, and because they get an up close view of your valve with the port camera, there is above a 90% chance that they can repair it versus replace it. This may not be available to you, just wanted to let you know about it. Best wishes and prayers on your decision.

 

[lb151]

I had the port procedure 11 years ago to repair the mitral valve. In Aug 2008 I had another to replace the valve. My surgeon promised he would try for the 2nd time,not knowing what kind of scar tissue he would find. I am so pleased he was able to do it again. This 2nd was more painful,much because I'm older and there was more tissue to get through. Find a surgeon that does this on a regular basis. I found mine at Duke,,its worth it to not to have your sternum cut in half if it doesnt have to be.
Good luck and God bless

 

[Scooby06]

When polled, mosr surgeons will take the full sternotomy.
Who is your MD?

 

[Adrienne]

I think that the main thing that you have to ask is which procedure is going to give you the best chance of a repair (rather than replacement).

When my surgeon saw my TEE results, he said he would have to do a sternotomy. After he actually opened me up, he saw that he could not do a normal resection (the usual way of doing a MV repair) because of calcium deposits on a certain portion of the posterior leaflet that was not a portion he would have cut off. So, he had to replace two ruptured cordae with Goretex and pull down the valve. He also put an annuplasty ring around the valve. Besides that, he did a left Maze and closed a paten foramen ovale. In any case, afterwards he told me that if he had gone in through the side, he would have had to replace the valve. That being said, maybe there are some surgeons that are so used to doing the minimally invasive approach that they would have beeen able to do it. I don't know, but I do know that when I woke up (with the breathing tube still in), my husband told me that the surgery had gone well and that the surgeon had been able to do a repair. When I heard the word repair, it was the most wonderful moment of my life!!! I gave the thumbs up sign!!

So, basically, what I am saying is just to let them know to what extent a repair is important to you. I realize that sometimes ia repair just can't be done by any method or by any surgeon, but with a very experienced surgeon, it usually can.

 

[JAJ99]

I have a few things to add after my comments on to you yesterday. I think the comfort level of the surgeon dictates the type of incision you get. I'm not sure what caused your prolapse but in my case, my valve was thickened therefore wouldn't close properly. It was a congenital condition. My surgeon wouldn't guanantee a repair but he did tell me that he never had a valve like mine that he couldn't repair. Not having a visible scar was important to me, but not as important as having a repair. Luckily I picked a surgeon who could do both.

I didn't really have much pain. My biggest discomfort was in my right leg where they went in to hook me up to the heart-lung machine. I think they have to access your femoral artery in the leg when they don't crack open your chest.

There are many surgeons out there that are competent in doing what you want. You may have to travel. People travel all of the time for surgery but you have to do what you are comfortable with.

I had decided to go with a tissue valve had they not been able to repair mine. I wasn't going to have any more children but I didn't like the thought of being on coumadin for the rest of my life. Again, a personal decision.

Best of luck. Feel free to send me an email if you'd like. Jean

 

[Snoviper]

I had the minimally invasive for my tricuspid valve replacement. I had the same thing first doctor said that he wouldn't do minimally invasive because if there was complications he would have to crack my chest anyhow. I went and got a second opinion from a more experienced surgeon and he said he could do the minimally invasive. They both said most likely they would need to replace and not repair. Because it was the tricuspid they both advised a tissue valve. Knowing that I would need a future operations to replace the valve, being I am only 45 I opted for the minimally invasive so it would be one less time they had to crack my chest. I am 5 weeks out and still sore but not bad. I am not sure how it compares to getting your chest cracked. The most pain came from the incision for the heart bypass in my groin and the incisions for the pacemaker, I had heartblock after the operation.

 

[ALCapshaw2]

I had the minimally invasive for my tricuspid valve replacement. I had the same thing first doctor said that he wouldn't do minimally invasive because if there was complications he would have to crack my chest anyhow. I went and got a second opinion from a more experienced surgeon and he said he could do the minimally invasive. They both said most likely they would need to replace and not repair. Because it was the tricuspid they both advised a tissue valve. Knowing that I would need a future operations to replace the valve, being I am only 45 I opted for the minimally invasive so it would be one less time they had to crack my chest. I am 5 weeks out and still sore but not bad. I am not sure how it compares to getting your chest cracked. The most pain came from the incision for the heart bypass in my groin and the incisions for the pacemaker, I had heartblock after the operation.

Could you elaborate more on the "groin pain" and "pacemaker incision pain"?

Was it constant? or were there times / positions where you were comfortable?

How well was the pain controlled by IV meds? Oral meds?

Anything else you think would be of interest to someone who might receive the same procedures?

'AL Capshaw'

 

[MikeHeim]

I was 28 when I had my surgery and I faced many of the same questions that you do. As you do, I needed a bi-leaflet repair and so I ended up travelling about 90 miles to make sure I had a surgeon who was known to specialize in more complicated repairs. Said surgeon favored the sternectomy approach for the reasons listed by your surgeon and others - more room to operate and better access. I had never heard that the minimally invasive method may give better access to the mitral valve, but it may very well be true. Other than my neck and shoulders, I didn't have much pain in my sternum at all, and to be honest I don't even think about the scar anymore.

Everyone needs a "backup plan" in case a repair ends up not being possible, and it would be of great concern if any of them told you otherwise. There are more than a few people on this site who have gone in being told that there was a 90%+ chance of getting a repair, only to wake up with a replacement.

 

[Snoviper]

Could you elaborate more on the "groin pain" and "pacemaker incision pain"?

Was it constant? or were there times / positions where you were comfortable?

How well was the pain controlled by IV meds? Oral meds?

Anything else you think would be of interest to someone who might receive the same procedures?

'AL Capshaw'

The groin pain where they put me on the bypass machine felt bruised inside. Some of it might be because of the location as it was right in the crease by the pubic area near my leg so a lot of movement each time I got up. Also the pain (bruised feeling) seemed to go up my pelvic area. Not sure exactly what they do when they hook you up but kinda felt beat up. It has since been feeling better. I had three incisions for my pacemaker 1. The pocket created during my surgery just in case (one permanent lead installed). 2. Incision from second pocket created because two leads were needed and the second lead could not reach the original pocket( Yippee). 3rd incision created to tunnel atrial (2nd) lead through my chest muscle, this one is the one that hurts most. It is mostly a stinging feeling. It looks like it is stretching. the location I think is the problem as it is close to my shoulder, the movement seems to stretch my skin at this point. The scar is noticeably three times wider then my others do to the stretching. Laying down on my back seemed to feel better on all the incisions. I stopped taking pain meds (Percocet) at the 3 to 4 week post op as I do not like to take pain meds of course this made the pain more pronounced. The pain meds did work but made me drowsy, I then switched to tylenol for a couple days then off completely.

 

[sparklette77]

Well, it is interesting to me that Dr. Oz was the first surgeon (out of 4) to tell me that I needed a Plan B in case it cannot be repaired. While the other surgeons put the chance of repairing my valve at about 95%, no one said anything about what happens if I fell into the 5% where the valve gets replaced. And Oz is the first person to say the chance of repairing it was that low (90%).

Now I feel almost as though I am at square one because I spent all this time getting myself prepared to have mitral valve repair surgery (since no one said I may not be able to repair it until this week) now I need to research valve replacement options. I guess it was stupid of me to not figure out for myself earlier on that if someone says they can repair it with a 95 to 97% chance of success that I should be thinking about what happens if I fall into the 5 to 3% chance that it need to be replaced instead.

If I cannot determine whether the minimally invasive procedure decreases my chances of a successful repair instead of replacement than I might as well go with the full sternectomy so that later on if it gets replaced anyway, I can never say I didn't do all that I could to try and avoid a replacement.

 

[MaryC]

Could you elaborate more on the "groin pain" and "pacemaker incision pain"?

Was it constant? or were there times / positions where you were comfortable?

How well was the pain controlled by IV meds? Oral meds?

Anything else you think would be of interest to someone who might receive the same procedures?

'AL Capshaw'

Al,
I also had about a 1 inch incision in my groin area. I had read up on the procedure prior to the surgery so I knew this is how they would connect me to the bypass machine but after the surgery I didn't think about it and didn't feel anything in that area. I mentally did the ostrich thing for both incisions and didn't look at them until I was further out from surgery. I know this sounds goofy but it worked for me.

Chris

 

[debster913]

I was 30 when I had my mitral valve repair. The incision is directly under my right breast (I think the picture is still on the TOOTS thread if you don't mind seeing a nasty-10-days-post-op incision line).

The only drawback to my surgery as it was minimally invasive is that the surgery team used my right femoral artery at the groin (a la angiogram) to connect me to the heart-lung machine. Because the tubes were poorly placed, I ended up with scar tissue inside the artery and needed a balloon angioplasty 8 months post-op. My doctor couldn't stent it because the scarring is right where my leg bends. I had no idea there was a problem until my right foot suddenly turned cold. Now I have "peripheral artery disease" (I put it in quotes because it's not like traditional PAD due to plaque).

My most recent complication from the surgery was my cardio was concerned this summer after my latest test that the artery had become restenotic with scar tissue. I'd been having Ankle Brachial Index tests to measure the blood flow every 6 months since the angioplasty. My cardio sent me in for an MRA which was "inconclusive," and then decided to do an angiogram. I still have 10-20% stenosis in that artery, and my cardio has decided I don't need any more ABIs/echoes of that artery unless I start having problems again. He did decide to put me on a vasodilator to keep my blood vessels open and free up blood flow.

My case is pretty unique, but if you are considering minimally invasive surgery, be sure you know how/where the heart-lung machine bypass tubes will be put. I had no idea there would be this type of problem with my case, but at least my cardio has been proactive in treating the problem post-op.

Best wishes,
Debi (debster913)

 

[KatieD]

One of the pre-surgery questions I asked my surgeon was whether he would have to change tactics and do the full chest opening procedure if there were complications or if the valve needed to be replaced instead of repaired. His answer was that for surgeons comfortable with doing port access (having done A LOT of them!) there was no difference in access and anything that could by done through the full chest procedure could be done through port access.

 

[sparklette77]

Thanks everyone! KatieD----I asked the same question and got a similar answer. Debster913----I hear that nowdays certain docs do not make the second (groin) incision for the minimally invasive approach. And there is this brand new but still in trial non-surgical option for MV repair called Evalves. Seems like science really is evolving every single day.

I am going to krieger/girardi (as recommended in this forum) next Wed and then will send
some follow up questions to the last two surgeons I saw before finally deciding what approach. I am trying to stop wrestling with this decision until after next week but it's hard not to think about every day. Funnily enough, I have made all sort of other preparations (leave of absence from work, where to stay during recovery, etc.) but haven't picked a doctor or a date! I just know that November is perfect for my schedule and hopefully that will work out. = )

I have to say it has been nice meeting everyone on this site. I've read through a lot of other posts and stories from other people (some sad and some really positive) and it's really wonderful how supportive everyone is.

 

[Adrienne]

And there is this brand new but still in trial non-surgical option for MV repair called Evalves. Seems like science really is evolving every single day.

As a matter of fact, I have a cousin in New York who is a doctor and who had me have an echocardiogram at his medical center after I had already had two opinions (after my endocarditis). To make a very long story short, he mentioned Dr. Oz to me (this was before I had ever seen him on TV) and said that he did the experimental Evalve procedure, and said that because it was experimental, I certainly wouldn't have to pay even though I live in Canada. I didn't want any experimental procedure, and besides that, I figured if the clip that clips the valve together ever unclipped (I don't know if that can happen) the heart would suddenly go from not having to compensate to suddenly having to compensate very much. That really worried me. In the long run, I had to have so many things done, I'm glad I had real surgery.