MV repair this fall

[LyonsAudio]

I know this is a replacement forum, but I cant seem to find a repair, or just OHS forum to ask questions to.

Im 27, almost 28 (in 3 days). I am 6'2" and 175lbs and always been active. Dairy farming is how I have paid my way in life so far, although I have a degree in Audio. I do that on the side.

I went in about a month ago for a quick check up. Really all I wanted was a tetanus shot and to ask about this stupid tennis elbow I have going on. The doc heard a murmor and I was shocked as I have never had one before although I hadn't been to a doctors office since pre-op on a minor foot surgery about 5 years back.

Ok, murmor, no biggy. My sis has had one here whole life, and after I asked my bro it turns out he had one found as of late too. Neither of which have been a problem yet. Schedule an echo for a few weeks later. Get that done, tech doesn't tell me much except that she can't say anything except confirm that I have what my siblings have which is an MVP. Still not freaking out.

Get a call from my Primary, 'You have a MVP, but the cardiologist is concerned about the severity of it.' I get his name but I cant get into see him for a while so I see a different cardiologist that I can get into sooner. He confirms. Tells me looks like a repair is in my future, sooner than later and we schedule a TEE (on the 16th) to get a closer look and a better idea of what I need done. From what we could see on the first echo, I am good to wait till fall/winter but we are unsure if we should wait much longer than that.

How often to 27 year olds get news of needing a repair? I am still a bit shocked. Outside of wearing out my shoulder in quick order and this stupid elbow I have always thought I was in great shape. I dont run or bike but work demands a lot of physical activity.

My EF is at 45, and my left Ventricle L/d (or whatever that size word is) is at 6.2cm.



TL;DR: Young, shocked, and wondering how many young folks get this sort of thing done.

 

[Duffey]

You've come to the right forum for information about mitral valve repairs. A rough guess, but I'd say about a third of the members here have undergone a repair on their mitral valve. I'm not one of them, but I'm sure those that have will be by to chime in. If you've undergone only one echo, it's possible as you go through subsequent tests that the numbers will vary along with the timeframe for undergoing a repair.

 

[ejc61]

Hello Lyons,

I was a bit older at about 44 when my MVP was a concern. I ,too, had a bit of a murmur probably going back to your age. It happens and my cardiologist didn't have any good reason. He did say that valves can get bad. Too much weight doesn't help which isn't your case it appears. While I've never been told my EF is a concern and LV may be a tad over what is ideal, my left atrium started to get big, over 4.0. Severe regurgitation, 4+ on the doppler scale I think it's called, and the left atrium over 4 cm IIRC is usually a sign that surgery is in the future. Also, I didn't have symptoms, so I had that going for me. There are other factors I'm told. My cardiologist's words, not mine and I am no where near claiming to be a doctor. So the TEE will tell a great deal, and I had it scheduled within a month once the decision was made to start looking for a surgeon. After that, you will most likely go for a Heart Cath which will explore your arteries basically from your groin area to your chest cavity. This will help determine if you have anything else going on. The surgeon wants to know as much as possible beforehand so that there are no surprises during surgery. For example, you go in for a MV repair and you also have 3 arteries blocked. This changes the procedure a bit. I was very nervous also as I had never had any surgery before. If it makes you feel better, I cycle and ski often so this hasn't deterred my activities.

 

[Adrienne]

There is a member called Debster913 who had a mitral valve repair when she was about 30. You could always contact her. I also had an MV repair but I was much older. Even so, everything went very well.

 

[scott.eitman]

I tell people that valves do not have an age. A defect is a defect.

As for repair, I recommend looking into robotic repair options. This is not for everyone, but if it is for you the recovery is much easier. A woman at work had one a few months ago and it blew me away at how easy her recovery was compared to mine.

Stay well
Scott

 

[Gail in Ca]

When I had my 1st OHS at age 34, they were just watching my mitral valve, as it was leaking only mildly. I didn't get it repaired until my 3rd surgery 4 yrs ago at age 54, as I was symptomatic and it was leaking severely.
However, had I needed it repaired earlier without any other fixes my surgeon said he would've gone in thru the rib, minimally invasive. But, with each surgery, I always needed my aortic valve replaced, so I had to have a sternal opening. My repair is doing well so far.

 

[BarbATS]

Hello, LyonsAudio!
Just wanted to share a bit of my history, might be helpful. I am now 67 years old, but when I was 27, at the birth of my daughter, the admitting doc asked if I had a heart condtion! It was quite a strange question to me, as I had no problems. He said he found a heart murmur--no other doctor ever noted this. He
told me to check with a cardiologist after the birth. I did and was told the murmur was a product of rheumatic fever that the doc felt I got in childhood-- possibly from undiagnosed/untreated strep throat. Mitral stenosis was the diagnosis. Doc felt I would likely not have any problem until I got into my 40s, and I saw a cardiologist to keep tabs. Sure enough, by 41, I was having symptoms of the stenosis, shortness of breath, lack of stamina, easily fatigued, etc. At that point--with the echo showing I was needing intervention, I had a mitral valve repair. It was OHS; I reurned to my full-time job within 2 months. At the time of the repair, I was asked to sign off on the possibility of replacement, just in case they found things worse than they had gauged. Happily, repair was the right
step and recovery was good. I felt and was well for 14 years (docs had predicted 12-15 years, not bad!). Then it was necessary to have replacement. At age
55, I got an ATS valve and have been doing wonderfully well since then.

Hope this story is helpful to you. With new procedures now available, and your youth and strength, if a procedure is necessary soon or down the road, I bet you will do great. All the best. Hope tohear

 

[Julian]

I don't know much about repairs but maybe you could dig up statistics on long term reliability of repairs. You definitely want to find an experienced surgeon that specializes in repairs. Of course the surgeon will go over plan B with you in the event the repair isn't possible after the surgeon gets their hands wet. My personal opinion about heart surgery minimally invasive or traditional you want to minimize the amount of time you tinker with your body. Every valve is different and it comes down to the surgeons judgment on whether or not the repair is a slam dunk or a risky attempt that will have you back on the operating table a year later wishing you would of did a full mechanical valve replacement in the first place. I was 28 when I did a full aortic valve replacement now I'm 30 and feel great but the first 18 months of recovery were difficult mentally and physically. I'm glad I've minimized my chances of having to do surgery again, nothing is guaranteed but I know I've given myself the best chance of not enduring surgery again. Yes we've made amazing advancements in surgery where some call valve surgery routine but for me recovery was not a good experience. My advice is do it right the first time...

 

[LyonsAudio]

My thoughts the last few days.

-looking forward to learning more after the TEE
-how much does this cost? I'm on good old Romney care (yeah farming pay). I think it will work out.
-I'm hoping that I am a good candidate for less invasive repair. UMass general does robotic...
-I almost hate knowing something is wrong. I moved 1.5 tons of grain by hand the other day and was getting mad at myself for how fast I was getting winded.

I just want answers as to what's in my future.

 

[ejc61]

Hello Lyons,

I went for my TEE about 4 months before I had my surgery an it was done by an intervention cardiologist. She said mine was torn a bit and dangly. I don't believe that the person doing this procedure will able to comment on surgery options. However, this information as well as a heart cath once reviewed by the surgeon will provide clarity. The procedure takes about 30-40 minutes and you are pretty numbed out. Wear comfortable clothes.

 

[Trey]

Hi Lyons, this is my first post here! I felt I can answer some of the questions, and so i should, so here we go. I have the perspective of a heart specialist, and a repair patient!

Ive seen many people that needed mitral valve repair in their 20's and I've seen people that need it in their 90's. Mitral valve prolapse is a progressive problem, there are many factors that can make the valve worse at any time for example 1 person can have the valve slowly prolapse over years and have a leak that progresses from mild to severe over 30 years. Another person can have a chord rupture, have a leaflet that becomes flail, and progress to severe literally over months. Some people will become symptomatic immediately from that flail and be picked up straight away because of the symptoms. Others can handle it and adapt without knowing it, the downside being that the heart is exposed to a torrential leak that then goes and may damage the heart over time until it is picked up incidentally. A colleague of mine that I trained is a recognized expert in the field and was recently asked to write as part of a blog that talks about mitral valve prolapse and the disease process in a way patients can understand, I would suggest you read it, I now tell my patients too. Its in the heart valve section at myheartnet.wordpress.com, i like the way its laid out.

I can tell you that if it is indeed the mitral valve prolapse that caused the regurgitation, you have probably had very severe leakage for a while. The reason being that your ejection fraction is 45%, normal is 55%. That suggests you may have suffered some damage over time, as usually long term exposure is required to cause that. Another possibility is that your heart muscle disease is the cause of the regurgitation and not necessarily the prolapse, these are things to discuss when you see the cardiologist, the TEE and other tests will shed light on this. Either way repair is needed to ensure no further deterioration and the best chance of recovery.

The key is don't worry too much, the good thing is that it has been picked up and its pretty much certain that your symptoms will improve with repair of the valve. The other good thing is that there is scientific data published to suggest that youth can be an advantage when it comes to recovery of function. It is key that if at all possible, you have repair of the valve. Replacement should only be performed when there is no other option. If a surgeon tells you that you need replacement and cant give you an excellent reason as to why, then I would seek a second opinion, the reason to go to someone with an established track record in repair of the mitral valve. The choice between robotic and open is a long topic within itself and may depend on the TEE findings. Just make sure that you are very comfortable with whoever you choose.

 

[LyonsAudio]

Thanks for the responses. The blog read was very informative. Glad to hear I am not alone in getting this done in y 20's. I was out biking with the kids today and I do feel quickly winded and long recovery times. Might not be the heart, might be.

My doc doing the TEE is actually my cardio too. This waiting game is annoying.

 

[missaviator]

I couldn't agree more with the waiting game...
I had my first OHS at 19, 2003, (2 valves replaced). I had Aortic Insufficiency since 3 years old, caught the dreaded endocarditis at 19 years old and underwent emergency OHS. My EF was in the low 20% They said I was incredibly close to having to get a heart transplant!

January of this year at my checkup, my cardiologist noticed a change in the velocity over the Mitral valve so it is either deteriorating/leaking, also a pseudoaneurysm, but my EF was at 77%
I go in next Tuesday, 5/21 for OHS to replace them again. The last 5 months have been hell, just because I am waiting, thinking every little ache is "my heart" and overall just feeling worthless because I know I'm not a 100%

I think your EF seems pretty low, and you are noticing symptoms. I know it seems overwhelming but the sooner you get an action plan, the easier it is to buck up and face the surgery head on. You are young and will bounce back VERY quick!

Sending you tons of positive thoughts and prayers.

 

[ejc61]

Hello Lyons,

While I'm twice your age, my wife and I ride our bikes alot. I felt no issues prior while I rode, but after, I felt much better. I compare it to wearing glasses. You don't notice your eyes are not at it's best until you put on glasses and say, "Wow this is much better!" Don't worry about being "too young" for this. I've had skipped heart beats and murmurs "on and off" since my 20's. It just took longer in my case I guess to become a problem. You will feel better afterwards and will just keep doing the things you like to do.

 

[catwoman]

My guess is that MVP may run in your family. There have been a few members here who have stories like yours, and a former co-worker has a family history, too. In her case, all her siblings have MVP + her mom and an aunt. I would certainly ask your doctor about familial MVP.

When my husband needed MV repair because chordae were ruptured in a car accident, I was able to talk with one of the members here who had MV repair at Presbyterian Hospital in Dallas. Her sister lived in Colorado and came to Dallas for the same surgery, with the same surgeon. Both had thoracotomies, instead of sternotomies. I was pleased with what she told me, so we chose the same surgeon.
My husband was 62 when he had his surgery and his recovery was far easier than my MV replacement at age 52, with a sternotomy.

 

[LyonsAudio]

Tee this morning.

Moderate to severe leakage, but everything else looks ok. No apperent damage. Wait and see game. Next echo scheduled for 6 months from now. They said my whole heart is big due to my large frame, and my left atrium is not enlarged when taking into consideration my over build. So the risks of surgury at this point do not outweigh the outcome.

Another cardio will review the results of this morning to confirm. It's good news but still disconcerting that its called moderate-severe and that my EF is a bit low. Sort of like I'm waiting for symptoms to deal with.

I guess I don't go under easy as they said he really had to load me up on drugs pretty heavy and have a pretty good gag reflex. The RN said he hadden't had to use that much of the 'sleepy one' (forget the name) since he had a heroin addict in. I've been mostly sleeping since I left the hospital. Not really all that fun of a procedure.

 

[ejc61]

Well the news doesn't sound too bad although I didn't have any EF concerns. You are not at severe yet and also the left atrium is not getting too big. I remember being told that severe along with an enlarging left atrium is the point of no return. While I got to severe with an enlarged atrium, I was never having symptoms. Looking back, I was wait and see for several years. I was having echoes every 6 months for 3 years FWIW.

 

[Mom2izzy]

MV repair this fall

I had MVP diagnosed when I was about 7...never slowed me down...never had symptoms. I passed out once when I was about 35. I hadn't seen a cardiologist in awhile and the new guy went all crazy about TEEs and surgery. He scared me, so I decided to go to my father in law's (also a doctor) cardio. He kept his eye on things, but never recommended surgery (NOTE: fainting was NOT attributed to MVP). 5 years later I passed out again...started reading up on surgeries...sounded like repairs (rather than replacements) had come a long way and should be done earlier Rather than later...got referred to a great surgeon...had surgery...feel pretty much the same as ever. I was lucky to have a very experienced surgeon (literally wrote the text book on Mitral Valve Repair)...it was a much more difficult repair than it would have been if I had done it sooner. I guess the moral of my story is, don't wait too long... My surgery was done at 40, but probably should have been done closer to 30.

Couple of other notes: I would have liked robot surgery, but my surgeon doesn't like robotic surgeries because he feels there is no substitute for being able to really feel what he is doing. He also made the point that there really is no such thing as "minimally invasive" when you are talking about heart surgery. he was great and I trusted him immediately, so I had it done the old fashion way..."mini" sternotomy. I tell people that pain wise, it really didn't seem much worse than my C section (and I was in the hospital for pretty much the same amount of time.)

Also...my heart was about the same size LV l/d (whatever that is) as you 6.2, but since I'm in a pretty small frame so it was a bigger deal for me. My surgeon was a little miffed that they didn't take my size into account when watching for their "magic number". Within 8 months after surgery it was right back to normal.

 

[Induja.R]

Hi , I am 35 years old and have Mitral Valve Prolapse since childhood and in 2001 had mild Mitral regurgitation. Last year my palpatations were repeating so had an echo and the Regurgitation has become moderate. Since last year i dont gain weight much and had slight dizziness and low BP often. Again last week i had severe dizziness feel and palpatations and went for an echo and diagonised with moderatly severe Regurgitation. So now my dr suggests to review again in 3months and says a repair or replacement of the mitral valve in a year is better for me. My Dr expected the surgery in about 10 years when they did the tests last year but unfortunately it has progressed so quickly in a year now and iam very upset about it. Now wats the advantage of a repair in comparison to a replacement?

 

[adgirl]

I had a similar experience.....went in for a basic examination and was told I had a soft heart murmur....never heard this before. My doctor send me in for an echo which showed mitral valve regurgitation moderate to severe. I was then referred to a cardio doctor who recommended a TEE. The TEE test results showed mild not moderate to severe.

I like you was shocked at all of this since I've never had any major issues although I am 66 years old so this scared the heck out of me. My TEE test showed 60-65 EF. I am now going to see a cardiothoracic doctor for a second opinion to find out where I go from here....

It is a very scary thing and I wish you well. I found this forum and website extremely helpful in finding answers....