Doctor said they never seen this before....

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youngmom

Well-known member
Joined
Apr 7, 2010
Messages
56
Location
north carolina
went to doc got the echo done to check to see if my aortic valve was any worse. come to find out that is still leaking moderately but my mitral valve is now severely leaking. My mitral valve was fine last year now leaking this year its completely destroyed. Doctors seem to think the aortic valve leakage must have cause the mitral valve to work harder thus starting leaking itself. i don't know. Anyway I have the numbers for the surgery but they are waitng for me to get "sick". What the crap is that. I feel like a time bomb. the doctors state they will not do surgery until im sick. he said it will have to be replaced in my near future example within 6 months. I have a small child and my nerves are SHOT. now I must wait and watch for symptoms. I hate anticipation. :mad:
 
Wow, I'm sure you are about to run screaming into the street. I don't blame you. Is it possible to get another opinion? Get your tests and measurements together and see what a different cardio says or just consult with a surgeon for some hypothetical scenarios. Good Luck
 
Where did you go to see Dr's? Is this from a cardio or a surgeon? If it is a cardio saying this, I would definitely go seek the opinion of a surgeon on your own. Waiting until you are "sick" is something cardio's are more likely to suggest, whereas surgeons are more likely to want to get in their before more permanent damage is done to your heart. I would definitely seek a second opinion.
 
Definitely, seek another opinion as soon as possible. I have read in many reliable publications that AVR is often needed BEFORE any symptoms appear. Many of us (me included) never experienced any serious symptoms. I would get copies of all your reports and tests and take them to another cardiologist and/or another surgeon.
 
First, quickly get a second opinion! Second, my severe aortic regurg did cause MVP, but it much less post surgery. It seems the blood rushing back thu the aortic valve was causing th mitral valv to work improperly.
 
Something classified as "severe" seems to warrant immediate attention and further action, such as a cardiac cath to better evaluate the condition of your valves. I would be seeing another cardiologist, like next week.
 
It seems as if some doctors are quite the same all over the world. They just give you a diagnosis, sent you back home and you have to deal with all that alone. What I learned is that it is most important not to panic in such a situation - I know it is not easy. As the others said: Try to get another opinion and hopefully they can do more for you than telling you, you are not "sick" enough.

Good luck from Germany!
 
Also agreeing wih everyone else, they sooner you get a second opinion the better,
Thinking of you,
Love Sarah xxx
 
Get another opinion, from a Surgeon!!
Do not wait to get "sick" as it will make your recovery much more difficult, and dangerous.
Been there, done that, through no fault of my own, but that of an internist who did not believe me when I said I thought I might have a heart problem.
I now have far more damage than I would have had if I had been seen by a cardiologist 4 months earlier, and operated on earlier.

I now have 2 mechanical valves, a third repaired, complete heart block, am pacemaker dependent with a defibrillator, tendancy to v-tach for no good reason, and an ejection fraction of 40-45%. And 2 near death experiences to my credit.

Yes, damage to valve 1 caused damage to valve 2. Damage to valve 1 resulted in afib resulting in maze procedure, resulting in complete heart block, resulting in need for pacemaker/defibrillator, which led to repair of valve #3, all of the above resulting in decreased heart function.

Do not wait. Get thee to a second opinion. Or a third. With a SURGEON.
 
I am going to sound like a broken record, but I agree. You need another opinion from a cardiac surgeon...preferably one familiar with valve repair/replacements. My mitral valve was repaired recently, and I had no symptoms...just severe leaking.
 
I'm doing this for the post count..and because I care, but ditto to all that was said above. I've never heard of waiting till you get "sick" to do something, that's why you do operations most of the time, to prevent getting "sick" or worse than you already are. Blasphemy if you ask me.
 
I had my first AVR and had NO symptoms. In fact most surgeons and cardios agree that when symptoms appear there are clearly signs of heart damage. When the op is so safe there is no point waiting too long. Also, mitral valve damage is relatively common as it does have to work harder with a leaky valve. However, this can normally be repaired and once a new valve is in place it shouldn't be a problem. I know what you mean about waiting, it's a horrible feeling but hopefully after you have got a 2nd opinion you will be in a clearer position to plan ahead. Good luck.
 
I agree with everyone, get that second opinion pronto. Damage is serious business and making the aortic valve work hard only makes things worse. Waiting till you get sick is very bad advice indeed. Good luck in looking for that second opinion. It is very important to keep up with making your body healthy and gaining knowledge is great also. Hugs for today.
 
I agree too.. get a second opinion. I have been to two cardiologists...one wanted to put me on blood pressure meds when my blood pressure has always been 110/70! Get a second opinion and let us know what they say!

FYI- My child is 22 months and I had my mitral valve repaired 10 weeks ago so I know what your going through...kinda :)
 
Yep, I would definietly get a second opinion. That is why I am still in the waiting room a year later. 1st doc told me I need surgery like very urgently. I sought a second opinion right away, and I find out surgery is not necessary right away. I stuck with the second Caridologist, who I really trust, and comes highly recommended. I found this year that I can still wait, because nothing had changed. I am a firm believer in second opinions. Will be hoping all goes well for you and will be praying for you. Good Luck:cool::thumbup:
 
I think it is unanimous, get a second opinion. I find it highly unusual that a moderately leaking aortic valve could destroy the mitral valve in one year. I'm not a doctor so this is just my non expert opinion. It just seems that if you were getting regular echos they would have noticed a problem with your mitral valve before it went from normal to severe. I hope everything works out for you and you get the answers you need.
 
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