You know i wish someone would do a thorough study on the longevity of repairs. It seems i hear of repairs not lasting long quite frequently on this forum, however i'm not sure that this is a fair cross section of the general population. My surgeon said that he was confident that my repair should last the rest of my life, and from the research i've done online a repair is supposed to be the gold standard. Of course this is all fairly new to the world of heart surgery, so we won't know the real statistics for some time. It is mostly contingent on the individual's particular circumstances and the surgeon they used. Still, i'm seeing way too many people post about their repairs failing than i would like!
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You know i wish someone would do a thorough study on the longevity of repairs. It seems i hear of repairs not lasting long quite frequently on this forum, however i'm not sure that this is a fair cross section of the general population. My surgeon said that he was confident that my repair should last the rest of my life, and from the research i've done online a repair is supposed to be the gold standard. Of course this is all fairly new to the world of heart surgery, so we won't know the real statistics for some time. It is mostly contingent on the individual's particular circumstances and the surgeon they used. Still, i'm seeing way too many people post about their repairs failing than i would like!
ejc61
Well-known member
Don't forget general health, age, and when the surgeries were done. It seems that every year, their are great advancements in cardiology. Things today are probably alot different that 10 years ago.
pikacat
Well-known member
That would definitely be interesting. I would suspect that you're right that part of this is that repairs are fairly new. I was surprised when my surgeon told me that my repaired valve might be replaced. No one told me that this might ever be a possibility, and I suspect that this is because 11 years ago, no one suspected that this ever would be the case. However, only just now the first generation of repairs are starting to age and fail. Oh well. Some people will be luckier than others.
i think so far he's just been categorized as "moderate". my big issue with waiting is that he's so symptomatic. his next echo is in a couple months so i'm going to have my list of questions readyeveryone's input has been a big help!
Well, now I am confused, because in your initial post you wrote: "my husband was just diagnosed with severe mvp with mitral regurgitation."
So now it's not severe, it's moderate? And please know, if I sound annoyed (and I am) it's not you I'm annoyed with, it's the doctor(s). An echo is not the best test to determine if a valve is has moderate or severe dysfunction, and if there's a doubt about it, the doc should either do a cardiac cath or a CT scan. Another echo in a few months sounds futile to me.
I don't want to alarm you, but there can be a point of no return when the heart has compensated so much for the faulty valve that it won't return to normal. I would imagine Nate is not there now, but my concern is one year of waiting for more "data" and another echo here and there might bring him to that.
I would be running for the hills to find a new cardiologist.
;safsdfksf
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Yes, as long as it's only one valve being replaced, no coronary artery bypasses, and no aortic anuerysm, a mini thoracotomy can usually be an option. It helps to have a surgeon who is experienced doing them; not all are and some just don't want to bother.
Another underlying cause could be whether the pre-op valve was deformed due to a congenital defect or damaged by illness such as rheumatic fever or endocarditis. If the valve is completely healthy and just needed to be restructured, i don't see why that shouldn't last a lifetime if the surgeon did a good repair.
Sorry hannah, didn't mean to hijack your thread
ejc61
Well-known member
Of course.
geckley
Well-known member
Hey Guys haven't been here in a LOOOONNNGG time but had to chime in here. You gotta go for a second oppinion. Mine was so bad that when I had my Cath and they started reading my pressures the Doc said 3 words that scared the crap out of me. "OH MY GOD" . They thought I was moderate and I turned out to be beyond severe. The years worth of data is weird. I was diagnosed in April of 2005, and had surgery in July 2005. Ask a ton of questions about the repair or replace isue. I had mine repaired and ended up back on the table 3 years later and am now fully mechanical.
Hi Nate & Hannah -- just wanted to pop in and welcome you to this great website. Be sure to use the "search" function above....worlds of info.
EireCara
Well-known member
Hi Nate and Hannah, welcome to this site. Would you explain what symptoms Nate is experiencing, as I have moderately leaking MVP with tons of symptoms that docs say could not be due to the valve as it is 'only' moderate !! Thanks!!
G
Guest
All of his symptoms seem to be related to the MVP so far. He's had quite a bit of anxiety (which has gotten somewhat better since getting the diagnosis), a significant amount of chest pain, shortness of breath, weird feelings in his left arm and fingers, very high heart rate, etc. As far as we can tell, everything has been heart related. Thankfully, the ace inhibiter he's on seems to be helping to keep his heart more consistent. Hopefully, when he goes for his next echo, his heart will show some improvement. What kind of symptoms are you having that your doctor doesn't think are related to your MVP?
hannah
Hi Hannah, I can't help alot with your questions, but wanted to say hello. We live in Camden county now, but my son has had most of his surgeries at CHOP and goes to the adults w/ Congenital Heart Defect clinic that is run by both CHOP and HUP so many of his docs are at both hospitals. We're lucky to live so close to many good hospitals.
Nate & Hannah,
Shortness of breath and chest pain are not good signs for anyone who has a valve problem. I wouldn't wait until the next echo to bring it up with the doctor.
I don't know if the doctor says he's hoping for improvement on the next echo, or is this what you're hoping for? Typcially, people with valve problems tend to stay about the same or get worse. I doubt if the ACE inhibitor will improve the valve. All it can do is help with symptoms.
I have to go back to what I said initially. If something on the echo shows as severe, it needs to be determined with a better test, such as a cardiac catherterization, just what the state the valve is functioning at. An echo is not a good test for getting a final opinion.
Since doctor now wants to "gather data" as you mentioned in your initial post, I would run and get another opinion either from another cardiologist or CT surgeon. If his valve is in a serious state now, waiting will not make it better, and can indeed make it worse.
Welcome to the zoo!:biggrin2: ... lot of good support and information here ... glad you found us!
One other thing that I also think needs to be addressed; you said "very high heart rate"; how high is it going, and how long is it lasting? If it's well over 100 and lasting a significant amount of time, I would get him to the ER. Sometimes MVP can trigger atrial-fib, and abnormal rhythm that needs to be treated.
duncanjo
Well-known member
Welcome! You'll know everyone is willing to help here..
G
Guest
hi lyn,
i might have lots of questions for you later
i was hoping i'd meet someone on here who was familiar with penn. have you and your son been pretty happy with the care? we're thinking nate might have to have surgery sooner rather than later because he's so symptomatic. his condition is still "moderate" but i know he doesn't want to wait too long.hannah
hi lyn,
i might have lots of questions for you later
hannah
He has his surgery at CHOP, but some of his testing ..Cardiac MRI at Penn (they have one of the best MRIs in the area) and yes we're very happy. He had his 1st,2nd 4th and 5th heart surgeries at CHOP and before his 4th we got opinions from a few of the leading congenital heart defect centers.
and went to CHOP (#3 was at duPont)
IS it possible some of his symptons are related to something else If his valve problem is moderate? Have they talked about a MRI along with the echo?
One thing I really like about CHOP and HUP is they have the big meeting weekly, where all the Heart doctors discuss patients to decide if they need surgery ect, and get every ones input. So you are getting more than just the 1 doctors opinion.
ps there are a few member that have their surgery at HUP, or go there and are being watched, you can do a search here..I believe a couple had Bavaria http://www.pennmedicine.org/wagform/MainPage.aspx?config=provider&P=PP&ID=823 so you could also search his name here
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Just wanted to welcome you to the forum Nate&Hannah.
From the sounds of it, your son is definitely experiencing CHF (congestive heart failure) and needs to have his condition addressed sooner rather than later. Do you notice any fluid retention as well, around his ankles, legs, torso? That too is a sign of CHF due to his malfunctioning valve.
Please don't be afraid to ask questions or concerns.....we're here to support you both through this difficult time!
From the sounds of it, your son is definitely experiencing CHF (congestive heart failure) and needs to have his condition addressed sooner rather than later. Do you notice any fluid retention as well, around his ankles, legs, torso? That too is a sign of CHF due to his malfunctioning valve.
Please don't be afraid to ask questions or concerns.....we're here to support you both through this difficult time!
