Port Access Mitral Valve replacement and Maze

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Bigheartedgal

I've been consulting with a few cardiothoracic surgeons as I have rheumatic heart disease and it is to the point now that I need to have it replaced. I've had two opinions one the minimally invasive port access and the other doc recommends the sternum route. My preference is to have the minimally invasive port access surgery - I'm also in the middle of breast reconstruction surgery due to a bi-lateral mastectomy in July - so I'm trying to avoid any more scars - not trying to be vane but geez a gal can only take so much! I'm relatively youg 49 - pretty active. So my questions are following:
1. Thoughts on minimally invasive for mitral valve replacement or sternum - I know the docs pros and cons - I hope to hear the patient's experience.
2. Does anyone know of a surgeon that does a ton of the minimally port access route for replacements and maze in the Milwaukee or Chicago area? I heard there is someone at Northwestern but I've called and I must be speaking another language.:cool:
3. Has anyone been through a valve replacement in the middle of breast reconstruction? What was your experience?
4.The valve choices - I'm on coumadin now and read about the Onyx Valve and the possibility that I might not have to take coumadin. I'm struggling having to take coumadin for the rest of my life - how does that really effect a body long term? I'm also struggling with having to have this surgery again when I'm older and not as healthy potentially. Does anyone have any advise or experiences with this?
I'm really feel that I'm very fortunate and have guardian angels watching/taking care of me. It's been quite the journey so far. I find that this part of the journey finding the right surgeon and making the decision on what to do is the hardest part, in my opinion. I truly welcome your comments and have found great comfort in reading this forum/blog and educating myself.
 
Gal,

Come on over to the Anticoagulation forum and we'll help you with the Coumadin/warfarin inquiries there. However, we have 2 members (maybe more) that have both been on this drug for over 45 years, (RCB & Dick0236). I'd say that's a pretty good endorsement right there. Coumadin is not a new drug. It has been around since the 1950's (President Eisenhower took it.) And with some common sense, and an anticoagulation manager who knows their stuff...there's really not much to it.
 
I had the port procedure for both a repair 11 years and then a replacement this summer. The same doctor did both and he does 3-5 a week. He is at Duke,so thats pretty far from you. I had concerns about coumadin as well. I have been on it for 4 years now and with the help of some folks here,I'm becoming a pro at dosing. The good news is there is a drug about 3 years away that will eliminate all the testing and worrying. Its something we can all look forward to.
If you find a doctor that does the heart port a lot and has a great track record,,the recovery time and pain is a lot less that the sternum route.
 
Hello Big Heart

There is a Surgeon at Vanderbilt University in Nashville, TN, Dr. Michael Petracek, who specializes in the Minimally Invasive Thoracotomy Procedure for Valve Replacement. This is typically done under the right breast I believe. Google his name and you will find links to his website and a video of one of his procedures.

He claims to do 200 Thoracotomies per year so I'm guessing that makes him one of the most prolific (if not the most prolific) in that procedure. One member flew in from the West Coast just to have him do her procedure. We have other members who have used his services. (Do a Search on VR.com for "Petracek" to find those posts)

He seems to be sold on the virtues of the St. Jude Valves and doesn't (didn't) seem to be interested in 'newer offerings'.

If you do talk with him, I'd be interested in his comments and your impression / reaction.

'AL Capshaw'
 
Thank all of your for your comments. I always thought that if I had to be on coumadin for the rest my life that it wouldn't be a big deal - until this doc shared the 1% mortality a year - however he can't be right as those individuals you mentioned would have a 45% mortality rate - doesnt make sense to me. So thanks for dispelling those fears - I've been on coumadin for over a year due to A-Fib - I have a great coumadin clinic that I go to where I've become good friends with the nurses/techs - they are all about my age and they love it when I come in so we can chat a bit.

Al- Thank you also for the name of Dr. Petracek - frankly I may check him out. My preference is minimally invasive and if I can find someone who does it a ton like Dr. Petracek - that's my guy. So now I need to research my health plan, etc. But this sounds promising. I saw port access surgery on the internet which where I heard about it first and after visiting his website and seeing his picture - it was his surgery.

I appreciate the websites and the new drug coming out - do you know which drug it is? I'll check out the websites and forums too. You don't know how fortunate I am to have stumbled across this forum. Thank you to all who share your experiences and comments freely. When I was diagnosed in June with Breast Cancer - it caused me to really look at things differently and count each day as a blessing and not regret any decisions I've made. But it also taught me the importance of being your own advocate and making a completely informed decision. This is a great forum - there should be something like this for breast cancer....hmmm I wonder if there is? God bless you all.
 
My husband had rheumatic heart disease also. His third valve surgery for a paravalvular mitral repair was using the Heart Port method through his side. He didn't want to go through the sternum a third time. Lots of scar tissue there.

He had a good result with this method. He was able to compare it to a normal sternum surgery and thought he felt better earlier then with a sternum cracking.

Every surgeon is good at one thing or another, and a lot depends on what has to be done, and your other medical problems.

I can tell you that repeat valve surgeries, or any repeat thoracic surgery takes a toll on the body. In my opinion, if you can minimize repeat surgeries, it can help in the long run.

Some of the new tissue valves have impressive longevity though. Something to discuss in detail with your surgeon.

But keep in mind, while your surgeon has no problem doing repeat surgeries, it's not his body. It's your body, and you are the one who has to go through it. He can walk away after closing you up and have lunch and go on to another.
 
There is also a surgeon in the Dallas, Texas area named Dr. William Ryan who did the heartport surgery on a few people from this site as well as someone I correspond with (a friend of a friend). He has a very good reputation. I didn't mention him at first because he seemed too far from where you live, but if you are willing to go to Nashville, maybe you are willing to go to Dallas.
 
Welcome Bigheartedgal,
I too have rhuematic on my mitral valve(my own) not
mechanical and have had an arotic valve repl.16 years
ago.

I'm just a call away for my second surgery and the sugeon
has told me he's doing it full sternum open as the first surgery.
16 years ago i was younger as im 47 now and will remain 47
for 2nd surgery,so my age factor gone up for 2nd surgery,but
the surgeon says he likes to be able to veiw all of the heart
and with the mechanical arotic he explained he feels he will
do a full sternum and i have no problem with this at all.
The coumadin iv'e been on for 16 years due to mechanical
valve already and iv'e had absolutely no issues with it and i've
cut myself,stabbed fishhooked my head.......all i can say is
i'm glad i was on it when these issues arose for me.
Therefore no problems this long for myself.
The most difficult is the waiting for me.I have been told that
this will be my final surgery,due to scar tissue etc and also
because i am a high risk for any kind of surgery,impaticular
open heart and i should be freaking out and crasy like i was 16
years ago but now with this site and having been there once
already and feeling comfortable with my surgeon,iv'e learned
to take things quietly.....maybe it's my age (LOL) i don't know
whatever i have to say i,m thankful for vr.com and don't be
shy to ask questions,they get answered and there are so many
great people worse off than me and i get myself into worrying and
praying for them i forget about me for abit and i'm glad your here
to get questions and answers and so glad your on board,i hope
you find a surgeon and get things sorted out for you,keep us posted.:)

zipper2 (DEB)
 
Thanks for the name in Dallas - I'll probably check into that surgeon as well. Would really prefer to find someone in the area Milwaukee or Chicago - I have a few phone calls out - and a couple of email, so we will see that turns up anybody close. Otherwise I think the Nashville doc or this one in Dallas may be the ones.

Lou - thanks for the drug info. I checked into it and it appears that the FDA did not approve due to increased risk for liver toxicity and increased heart failure. Do you know if they are doing anything more with that drug. I pretty much know I'll go for a mechanical valve, as I won't want to do this twice - does anybody have a any experiences with the ON-X valve? I heard there is a clinical trial going on with respect to the potential to lower and possibly eliminate the need for ant-coag drugs - which would be great...if it's true.
 
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