Scary Diagnosis

[adgirl]

I just was diagnosed with moderate to severe mitral valve regurgitation.....couldn't believe it....have been having heart palps but thought nothing of it....now I have to go for a TEE test Monday ....I'm kind of flipping out since after having read all I can on the internet, it looks like surgery will be the only option...just trying to get some feedback from those that have been there and advice. Thank you so much.

 

[clay_from_nj]

Prepare for the worst, hope for the best. At this point, it's way too early to tell what may happen, so start getting used to the idea that you may need OHS soon, but realize that you might be just fine. For most people it seems, not knowing is the worst. Right now, your condition hasn't changed overnight, you were just diagnosed with something that was previously unknown. So, on the bright side of the dark side, if things are bad enough to require surgery soon, at least you will know about it and be able to address it rather than getting some much more unpleasant surprise. And remember you can always come here for prayers, support, comfort, and lots of opinions. BTW - with moderate to severe regurgitation, what's your murmur sound like? My stenotic and regurgitating bicuspid aortic valve sounded like an old dishwasher. That's kind of a basic test - a loud murmur is pretty definitive evidence that something isn't right.

 

[AZ Don]

As scary as the diagnosis is, heart valve problems can be fixed. My OHS wasn't much different (to me) than other surgeries that I have had, and for the mitral valve I think replacement may be possible via a minimally invasive approach. In any case, see what your Dr and Cardiologist say. If you are referred to a surgeon, find one you like and that has experience with the procedure that you need.

 

[Midpack]

I just was diagnosed with moderate to severe mitral valve regurgitation.....couldn't believe it....have been having heart palps but thought nothing of it....now I have to go for a TEE test Monday ....I'm kind of flipping out since after having read all I can on the internet, it looks like surgery will be the only option...just trying to get some feedback from those that have been there and advice. Thank you so much.

Hi and welcomed!

You will probably need surgery sometime in the future. But if you are symptomless (most typical symptoms are being "out of breath" and tired), your systolic function is preserved ( key values to take into account are "ejection fraction" and "end of systolic diameter"), and your regurgitation is not still into the severe stage ("moderate to severe" is not the same as severe), you can be stable and not need surgery for YEARS. In that case, you will probably be monitored with echos twice a year.

Take care, you will be ok!

 

[Heart Of The Sunrise]

Do not sweat the TEE...I barely remember mine.

 

[Agian]

I had another TOE (TEE) a couple of weeks ago. Although unpleasant, it was over and done with quickly. Harmless really.

 

[adgirl]

To AZ Don.....What is OHS? (guess that means Open Heart Surgery?) Thank you for your reply. This all happened so fast and I just moved to St. Augustine, FLA so finding doctors is a challenge.
A friend recommended the doctor who found the heart murmur thus the echo thus the diagnosis I am having a Tee recommended by a cardiologist on Monday but am now looking into getting an appointment at the Mayo Clinic here in Jacksonville as I know they have a good reputation. How did you find your surgeon? I see you also went to a Mayo Clinic .....

 

[adgirl]

I thank everyone for your replies....this forum really helps for support and info since I am freaked out a bout this. The doctor told me I have a soft murmur (whatever that means?) Does anyone have advice on how to find a good surgeon if I should need one? I am going to check out the Mayo Clinic here in Jacksonville..

 

[epstns]

Don reminded me of how freaked out I was when I was first diagnosed with aortic stenosis (about 14 years ago). The folks here on the board told me then that I should be relieved. I had a diagnosis, not a "well, we don't know. . . " AND that diagnosis was something that can be fixed. They reminded me that I was in a far better position medically than the unfortunate folks diagnosed with diseases that have no cures. We do have a high probability of favorable outcome, so try to relax just a bit.

When choosing a surgeon, I asked around here, and also spoke with my cardio. I understand that I was in a slightly better spot, having known and trusted my cardio for a number of years by the time I was ready for surgery, but even if you haven't known them for long, if you trust a cardio, you can ask them for a few referrals to the surgeons they would send their own parents or children to. You can also do as you are now doing -- choose the hospital(s) that you would consider, then look up their surgeons and do some research on those docs.

Also, if your cardio indicates that your case has any "special circumstances" I would look for surgeons who specialize in those situations.

I chose a well-known surgeon for my surgery. His intro line was something like "I may not be the number 1 man in this field, but I AM number 2." Maybe not the warmest personality, but a surgeon of the very top qualifications for my specific needs.

 

[adgirl]

Steve....Thank you for your input....very much appreciated....I have done some research on the internet for surgeons and I now have an appt. set up with one at the Mayo Clinic who specializes in this if I need surgery which I will probably find out next week after the TEE test.

 

[knotguilty]

My advice would be not to worry until they give you something to worry about. I don't remember anything about my TEE. They may want to do a cardiac cath on you as well to check for anything else. Again, nothing to worry about. As far as checking for surgeons, I searched for "Top Doc's" in the area. Also look for reviews of doctors and hospitals. I would not be surprised, if you don't have any other symptoms, that they decide to just watch you. Good luck.

 

[Guyswell]

When I was choosing a surgeon, I asked several cardiologists "If I was your son, which surgeon would you choose for me?" That question made a few of them pause before answering. It was fun and revealing. Try it.

 

[triff]

Lots of good advice above and even if you do need OHS at some point in the future, it's a fairly routine procedure these days with far less chance of complications than it used to be - options are expanding all the time and there are newer minimally invasive options that might be suitable like the MitraClip. If it is OHS, you've got plenty of time to research valve types, hospitals and surgeons if you want to but maybe don't jump the gun if that might just make you worry more. It's easy to think the worst with the Internet at your disposal but nobody can say the extent of the treatment you'll require without an echo/TEE and a lot of experience, I apparently had undetected mitral valve regurgitation for 35 years and lived a perfectly normal life until I got endocarditis one day, had I known about the murmur I could've spent my entire life researching things that wouldn't have made any difference in the end.

My MMVR was suddenly sprung on me one day after a transfer from three weeks going rapidly downhill in a different hospital, I was totally riddled with infection, very feverish, hallucinating and not thinking straight at all. The surgeon was almost so eager to get inside my chest that my mates wanted to tell him to back off, but that was just a measure of how serious the assessment was. I didn't get a choice of hospital or surgeon because there wasn't time, the first sign I had of surgery was hearing the ward staff throwing about the word 'cardiothoracic' before my transfer and Googling it, my valve choice later that day came down to 'tissue or mechanical?', I picked mechanical (good choice) and by the time I even knew there were different brands, it was already in and happily ticking away.

So I guess maybe hold off on the Internet cardiology, it's so easy to overreact and assume the worst in these situations and even on a forum like this, everyone has very unique circumstances and no two cases are the same even if they sound that way on the surface. But if it does turn out you'll need OHS at some point in the future, do all the research you can then and hit it head on armed with all the facts and the best surgeon you can find. Good luck!

 

[adgirl]

Triff....

Thank you for your advice....I do believe researching too much on the internet can make it worse sometimes and right now, I don't have a thorough evaluation until I take the TEE test on Monday. Then I guess I can move forward the best I can with what I'm dealt with....

I am glad I hooked into this forum though because I've gotten a lot of responses and knowing there are people out there that have gone through similar if not the same thing, helps me. You need the support.

Once again, thank you.

 

[triff]

Yup, it helps a lot. I didn't find this forum until the day before my op was initially planned (it came up in a Google result when I was pondering the tissue/mechanical dilemma) but it's been invaluable for post-op advice and getting answers to all the little questions I can't be hassling my cardiologist with every five minutes.

Good luck with the TEE, they're uncomfortable but by far the best way to see what's going on.

 

[gerrychuck]

Hi adgirl; I was in much the same position as you last year, with the notable exception that I was failing quickly and didn't have a diagnosis. When I was diagnosed as having very severe mitral regurgitation, is was straight to the OR for valve replacement, so I didn't have to deal with the uncertainty and anxiety that you are. Best I can tell you is that if and when surgery becomes necessary, the end result is usually a very positive outcome. I am healthy and fit today, after being a very sick puppy prior to surgery, so keep the ultimate result in mind if you are someday told that surgery is needed

 

[adgirl]

Gerrychuck....Thanks for the positive input and I'll try to keep the end result in mind.

 

[Adrienne]

In addition to what everyone else said, if and when you do need surgery, the mitral valve can usually be repaired rather than replaced which means that you won't necessarily need anticoagulants for the rest of your life (as with a mechanical valve) nor will your valve necessarily calcify (as with a biological valve).

 

[AZ Don]

To AZ Don.....What is OHS? (guess that means Open Heart Surgery?) Thank you for your reply. This all happened so fast and I just moved to St. Augustine, FLA so finding doctors is a challenge.
A friend recommended the doctor who found the heart murmur thus the echo thus the diagnosis I am having a Tee recommended by a cardiologist on Monday but am now looking into getting an appointment at the Mayo Clinic here in Jacksonville as I know they have a good reputation. How did you find your surgeon? I see you also went to a Mayo Clinic .....

Yes, OHS = Open Heart Surgery. We really should have a glossary of all these acronyms somewhere. A test for another issue reported that I had a dilated aorta so my GP referred me to a vascular surgeon but I wasn't really comfortable with the choice, so I called Mayo Clinic. They asked what my issue was and then explained that I needed a thoracic surgeon, not a vascular one. They suggested the Dr. and I looked him up and found that he was on the list of top Doctors which I think puts him in the top 10% in his field. I did see a Cardiologist as well but was comfortable with the first surgeon I saw. I highly recommend Mayo Clinic, but they are very selective in what insurance they accept.

FYI, the top Doctors list is available here for a small fee: https://www.castleconnolly.com/index.cfm. It used to be free at US News and World Report.

 

[adgirl]

Just wanted to let all who gave me support and advice about my diagnosis that I had my TEE today (glad to know I didn't remember a thing)....the good news is that my mitral valve regurgitation is mild not severe which means no surgery at least right now. I have a doctor's appt. tomorrow to see what that actually means as far as follow-up, etc. but I'm happy for now.

Thank you everyone who helped me understand this a little more.