surgery for mitral valve repair

[barbaranna]

I am sending this for my daughter who does not have a computer. She has mitral valve prolapse with regurgitation which is severe now. Her insuraacne won't cover for her to go to Cleveland so they are sending her to Strong Memorial with a Dr Peter Knight. Any comments or info on that hospital or Dr would be greatly appreciated. He told her that both leaflets in her mitral valve has to be repaired and he said he could do a small incision on the chest or go through the side. She is undecided . He told her that the side surgery is a little more complex but can be done. We have so many questions that arent answered and need to have people that have had this done before give us as much information as possible. The computer has scared the living heck out of her from what she has read.
Some of our concerns are about the lung heart bypass machine. Is sounds dangerous about ending up confused and wonder if the longer you are on it does it become more dangerous? Another thing that worries us is about stroke with the chances of having one. He said there is always a risk of stroke and more with the side surgery because I am trying to understand him by telling us that an incision has to be made in the groin and that is where the tube is inserted . The reason for more of a risk is that the blood is being pulled down instead of up? Does anyone know what he is talking about? I asked him if he meant blood clots and he said it could also be air and etc. He gave her a book and what from she reads from the book is that about a million pills and blood thinners are needed after surgery for quite a while. She has no choice but to have this done but we are so worried. 4 years ago she went into cardiac arrest they said they feel it was from low potassium and had to have a defibrillator put in. Can anyone that has had a valve repair please write us back and tell us your story or give us some info that we need. She is also worried about the surgery being around that time of the month and that she is bleeding with blood thinners if that would be a problem. Please help. We are trying to schedule for Feb. She is 38, single with 4 small children and doesn't know how she will cope afterwards.

 

[kfay]

Is your daughter getting her valve repaired or replaced? Even if she is hoping for a repair, she needs to have a backup plan in case it can't be repaired and decide if she wants a mechanical or tissue valve. If she is getting a repair, she should only have to be on coumadin or "blood thinners" for a period of around 3 months. Most of us are sent home on a ton of other meds as well, but those are generally stopped after a short time period as well.

I don't know how much higher the stroke rate is (if it is in fact higher) on mini-sternotomy vs. a thoracotomy, but I can't imagine it is much. Maybe someone who has had one will know the exact statistics on that. With 4 small children to care for though, it might be easier for her to have the thoracotomy though since she won't have to wait for her sternum to heal, just a thought.

It seems like you and your daughter may have been overwhelmed with your first meeting with him. Maybe you can call and have a second conversation over the phone with him to clarify your questions that have come up since then or call and speak to his nurse or PA.

There is another thread on here about women being on their periods during the time of surgery. It seems to happen to all of us, no matter where we are in our cycle. Tell your daughter that is one thing she just doesn't need to worry about, they will take care of it if it comes up.


Kim

 

[Greg a]

Barbaranna , a heart felt WELCOME to our OHS family don't let the computer put fear into you or your daughter .....there is a wealth of knowledge here for now and the future ..... We alaso have a family section .......The more you learn the more you will be comfortable and helpful to her

ALSO THE ONE THING I WOULD SAY IS ASK QUESTIONS it is paramount that you get all the answers you seek

I hope these will help you to prepare yourself and your home

Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf[/

 

[ALCapshaw2]

I usually recommend that Heart Valve Patients find a surgeon who has experience and a good track record performing the procedure THEY (the patient) will need. I'm sure there are experienced and skillful Mitral Valve Repair Surgeons in New York.

Your duaghter needs to ask any and all surgeons she interviews about How Many similar procedures this surgeon does per year and what are his morbidity/mortality numbers for this procedure. That includes both Valve Repair and Thoracotomy (through the ribs - less common) versus Sternotomy (through the sternum - most common).

It may help if your daughter could find a computer (at a library for example) and browse around our forums to get a feel for how our members handled their situations and came to accept their fate with hope and even peace. Just about everyone here is either a Survivor of Valve Replacement or a family member of someone who has survived Valve Replacement. If we can do it, so can your daughter. She also needs to know that Heart Surgery is a highly refined art now with extremely high success rates for first time surgeries in patients under age 65 when performed by surgeons who do this type of surgery on a regular basis.

'AL Capshaw'

 

[deano89]

i had a mitral valve repair oct 2009 , i to was diagnosed with prolapse at 21 (48 Now) which went sevre leakage in 2008ish and needed surgery. i had full sternoctomy my surgeaon has very strong veiws on minimal invasive surgery likening it to trying to wall papering your hall way through a letter box, it can be done but would you like the result is his analogy
my own personall veiw on this is i would like the surgeon to have as much room as poss to get the job done well
it is major surgery but a good Surgeon has it down to a fine art, i was absolutely worried out my skin, but once i came on here a lot of my fears were put to rest. hope we can do the same for you and your daughter .
i am now left with a faint silver line hardly noticable ,when i met Mr Frank Wells he said the risks were minimal and gave me a 1 percent risk , a lot depends on your age and the shape you are in at the time of surgery
i agree with Al if your daughter can get online and ask questions, it will help her a great deal , i posted quite a bit before and after surgery so you can read about mine and others journeys through it on the forum just search the user name

 

[Adrienne]

MV Repair - 2005

MV Repair - 2005

Hello. I can only speak about my experience which was a full sternotomy (but with about two inches of the skin on top not cut - they stretch the skin so they can cut the bone). It was a very complicated repair, so the surgeon said he had to do a sternotomy. Although it was not pleasant after the surgery, I had no complications, and every day was a bit better than the day before.

The one problem your daughter will have with four small children if she has a sternotomy is that she will not be able to lift anything heavy for a couple of months, so she really will need help.

 

[AgilityDog]

I had severe mitral valve prolapse before my first surgery/ mitral valve replacement. The damage to my heart later required a second valve replaement - my aortic, plus a repair to my tricuspid. Your daughter is no doubt pretty sick at this point. I know I was. When you are that sick, the surgery is harder, but as you say, there is no choice. The longer you wait, the harder the surgery will be. I was in surgery within 10 days of diagnosis. That's how ill I was.

My aortic surgery was much easier, as I was much healthier.
My caringbridge site for my aortic valve replacement is lauriesavr if you'd like to read it.

Some of us have had a rough time after surgery, but the vast majority do very well and are shocked at how much better we feel soon after surgery. Generally full recovery takes about 12 months. I'm at 5 months, now and other than a few aches in my sternum and ribs, I wouldn't even know I've had the most recent surgery. Oh, except for the scar on my chest. I had full sternotomy both times. Who cares! My idea is to give my surgeon whatever access he needs to save my life and quality of life.

 

[Jkm7]

Hello. I can only speak about my experience which was a full sternotomy (but with about two inches of the skin on top not cut - they stretch the skin so they can cut the bone). It was a very complicated repair, so the surgeon said he had to do a sternotomy. Although it was not pleasant after the surgery, I had no complications, and every day was a bit better than the day before.

The one problem your daughter will have with four small children if she has a sternotomy is that she will not be able to lift anything heavy for a couple of months, so she really will need help.

My surgeon did the same thing. He said he cut bone about 2 inches higher than he cut the skin at the top of my incision, both times. It has healed so amazingly well after being opened twice, that only at the bottom, it is obvious there's much of a scar. I have always been lucky to be a 'good healer'.

This surgery is very serious and very frightening but so successful in a huge percentage of the cases. Almost all of us are amazed how well we manage, how soon after surgery. I didn't need much help in my house from my husband when I came home, particularly my second OHS.

As pointed out already, it will be very important she not lift anything more than 10 pounds for about 3-4 weeks and only slightly more for more weeks. If she does not allow her sternum to heal properly, it can be a bad situation to try and get a proper healing after doing injury/damage to the healing sternum.

Most of us who have done this (some of us more than once), find we reach a point where we accept there is no option but to go forward and we give up ourselves to these trained, very experienced surgeons and their teams. They will make is possible for your daughter to watch her wonderful children grow up.

Best wishes.

 

[normofthenorth]

+1 to everything that everybody has said -- except that YOU said that "The computer has scared the living heck out of her from what she has read." And lots of other people have recommended that she join us here, read the stuff, and ask us a bunch of questions. That all worked fine for me, but I don't scare easily, and I'm an info junkie. Your daughter sounds different, so you may have to be her "info filter".

I had a different repair done to my Mitral Valve (a Dacron ring, not work done on the individual leaflets) during the recent surgery that also replaced my Aortic Valve. The MV repair means I'm on Warfarin/Coumadin/ACT for 3 months post-op. I think most MV repairs necessitate that transition. I'm almost half-way through it now, and it hasn't been too bad, touch wood.

I started discussions with my fancy surgeon hoping to "bully" him into some kind of minimally invasive surgery instead of a full sternotomy. Instead, he convinced me that he'd be 10-20 times more comfy and confident during my op if I let him crack my wishbone open. I'm often pretty pushy with doctors -- even my Cardiologist! -- but I turned into a wimp when I started thinking about how comfortable my cardiac surgeon and his team were going to be, while I was "out" and on the pump! (And nobody even mentioned re-papering the walls through the mail slot to me -- yee-yikes!) Of course, I'm a 65-y-old guy, and my chest hair is already starting to hide my (skinny, nice-looking) incision, so it's definitely not the same situation as your daughter's.

Like so many decisions in OHS, this is a really personal decision. Minimally invasive surgeries almost always leave smaller and prettier scars, and they USUALLY (but not always) have quicker recoveries, without waiting 6 weeks or so before you can lift more than 10-20 pounds. In return, they make the surgery trickier for the surgical team, especially if they don't specialize in those kinds of operations. I think at least ONE of you is going to have to ask enough questions to make a decision that you're both happy with.

Good luck!

 

[Michelle D]

I was a candidate for robotic repair and when they went to put the thing in my groin the artery was too small so they did a sternum incision instead. I told him before hand do whatever is necessary to fix me up for good. I didn't want to have surgery again, I even elected to have him fix my minor leak in my tricuspid but he laughed and didn't think that was necessary. I'm perfectly fine that they went through my sternum, they fixed it and that's all that matters to me.

 

[Johnz]

I had mitral valve prolapse for many years but at age 43 contracted endocarditis and it was time to repair my damaged mitral valve. I had robotic repair at the Cleveland Clinic and it was a remarkably good experience, all things considered. Before that, I consulted with Dr. David Adams at Mt. Sinai in Manhattan and considered going with him. He would have performed a full sternotomy with a longer recovery time, but he's an excellent surgeon and was very reassuring about the likelihood of a successful repair, even though it was a complex procedure to repair my valve. If you are limited to NY, I would recommend you visit the surgeons at Mt. Sinai in addition to the ones at Strong (I don't know about that hospital). I found having two different top surgeons look at my TEE (transesophageal echo) and give me their opinions was extremely valuable. If your daughter puts herself in the hands of a very experienced surgeon, your outcome will be fine. This is a surprisingly routine procedure, even if it isn't easy.

 

[UnderDog]

I second Johnz's recommendation to have a consultation with Dr. Adams at Mt. Sinai in NYC. He and Dr. Varghese (who posted earlier in this thread) were my surgeons for mitral valve repair this past October. I went to Dr. Adams for a second opinion after another top surgeon in NYC told me he thought the likelihood of successfully repairing, as opposed to replacing, my mitral valve was less than 75%. Like your daughter, I had bileaflet prolapse, which is a more difficult valve lesion to repair. I also had what is known as "Barlow's disease," which means that there was significant extra tissue on my valve leaflets that prevented them from forming a tight seal. My consultation with Dr. Adams lasted about 45-60 minutes and he answered all of my questions and then some. Based on his experience with valves like mine, he thought he had close to a 100% likelihood of successfully repairing my valve. I believe that Mt. Sinai's successful mitral valve repair rate is greater than 95%. I will never regret choosing Dr. Adams, he gave me a perfect repair; my post-surgical echos show no evidence of mitral valve regurgitation. He told me after my surgery that it was one of the more difficult repairs he has done- I have no doubt that lesser surgeons would have given up and replaced my valve.

While my surgery did involve opening my sternum, the incision size is only about 4 inches long and starts low enough on my chest that it is not visible when I wear v-neck t-shirts (Dr. Varghese made the incision). For women, I believe that Mt. Sinai can make the incision below the fold of the right breast and perform the repair between the ribs, rather than cutting through the sternum, which makes the scar very difficult to see. I would encourage you to explore their website- www.mitralvalverepair.org- which is very informative and gave me a lot of comfort when I was researching surgeons and preparing for surgery. I wish you the best of luck.

 

[jen72]

Hi,

I am 30 years old and I had a mitral valve repair and ASD closure on June 24, 2010. My surgeon was Dr. Adams at Mount Sinai in NYC and he was wonderful. He does mostly mitral valve repairs and does them quite often on young females. My insurance (from CT) covered most of his fees and Sinai actually waved some of the assistant surgeon fees because they felt the insurance company was overcharging me. I had the surgery done via thoracotomy (side surgery between the ribs) and I had excellent results. At the beginning I wasn't sure if I wanted the thoracotomy because they told me it would initially be more painful than when they split the sternum but I am really glad I had the thoracotomy. To look at me you would never know I had surgery at all. The most painful part of the surgery for me was the chest tubes I had inserted (3) to drain my chest cavity. They hooked me up to one of those push button machines with pain meds so I could push it every 8 min if I needed to. I found that I didn't really need to push it that often. Once the chest tubes were removed I didn't have a lot of pain, mostly from my ribs being shifted around during surgery. I was on heart/lung bypass for almost four hours and I had no ill effects. I had the incision in the groin for the tube but the incision healed quickly. The area on my leg below the incision is still a bit tender if I rub it too hard, but most of the time I don't even notice. All of my incisions were closed from the inside out so I had no stitches or staples, only skin glue. After the surgery I was given heparin shots twice a day to prevent blood clots until I was able to get up and move around more often (about 4 days). I had the booties on my legs that help reduce blood clots which I wore at night. I developed some arrhythmia after the surgery that I took medication for, but am off of it now. The only blood thinner I needed was aspirin once a day for four months. After I came home, I was tired and usually napped during the day for an hour or two. That lasted for about two weeks before I could go all day without sleeping. Your daughter will need help all day long for a few weeks, she will not be able to lift more than 10 pounds or drive for 6 weeks after surgery. Overall, I had a good experience, but of course everyone is different. I would be happy to talk to you about anything else if you send me a msg.
Jennifer

 

[barbaranna]

Wow such good information you all have given me!! Things now seem to be changing and are becoming quite frustrating. They set the surgery for February 18th and then the reception called my daughter yesterday and told her that he wants a stress echo done and is not sure if he would do the surgery right now. Finally he called this morning and talked to her and said that from what he is seeing on the echo that was done before her consult that it may look like only moderate to severe and that they never do surgery until it is severe because of the high risks of the surgery. She has a defibrillator and told them that it would go off if her rate went high but they said they would turn it off for that test. They said they need to see how much blood flows out during the stress test to see actually how bad it is. What is confusing it she has had echos every 6 months from her cardiologist and the last two went that she had it done and he thought it got. worse so he did a TEE and found out it wasnt that bad yet, so 6 months late he did another echo and then a TEE that was in Sept and said it had gotten worse and it was time to start getting consults. But now this surgeon looks at the echo and TEE and says he doesn't think it is that severe yet? Don't know who or what to believe!! Or where to go or what step to take next!!My sister is a surgical nurse and she feels we should get a second opinion with a Dr. John Bell-Thomson in this area which is Buffalo.I don't know how the hosptials in Buffalo are.

 

[doberman]

Hi,
I am sorry to hear this as I know how difficult the waiting is. I would get a 2nd opinion. I went through a similar situation with one Cardiologist giving me any time up to 10 years for my surgery. I was fortunate to see another Cardiologist and Surgeon in Toronto. They have statistics that proved that in my case the earlier the surgery the better for my overall outcome and life expectancy. I would research doctors and find a 2nd opinion, if your 2nd Doctor agrees I guess you have to wait it out.
I will mention that if the surgery goes well you really should feel better than you have in some time. (I say very hopefully)
best wishes.