Misdiagnosis

[matbunch]

So...it has been a very long wait to hear my echo and MRI results.....and when they finally arrived...I couldn't believe my ears. My doctor is still in shock...and couldn't call himself because he has been trying to verify this amazing fact!

Although I was diagnosed in 1996 with BAV after my very first echo.....the current echo and my MRI seem to be showing a 3 leaflet aortic valve! (Which would explain why the aorta seems to be normal size ) They are having trouble explaining this...and are scrambling around to verify.....but if it were true....it would prove to be a miracle. I am speechless...... I have just spent 2 months of my life worrying about something that doesn't exist in me.....what little faith I have.

I will post more when I know more....and I hesitate to even post this...because I know so many of you are struggling.....but miracles still do happen! Our life is NOT in our hands or our doctors hands..............it is in the hands of the ONE who so intricately and fearfully made us. Why am I so dull of hearing?

 

[Bill B]

More likely the echo reading(s) was/were incorrect than you had a miracle. Still, that's great news.

 

[escargome]

Great news! I will share something that my mother's doctor said to me almost 9 years ago as she lay in her last days of life "I can only tell you what medically I see going on, I cannot even begin to tell you what the end result will be, doctor's will never admit this, but we are not God" So, now take in the information that was given to you and in live your life to the fullest and enjoy the blessings you have been given.

 

[ottagal]

Great news! I will share something that my mother's doctor said to me almost 9 years ago as she lay in her last days of life "I can only tell you what medically I see going on, I cannot even begin to tell you what the end result will be, doctor's will never admit this, but we are not God" So, now take in the information that was given to you and in live your life to the fullest and enjoy the blessings you have been given.

That is wonderful news! I was told as I child I had moderate pulmonary stenosis that was to be followed. It wasn't until I around 19 years of age, the cardio said "oops...we have aortic stenosis and a bicuspid valve and only mild pulmonary stenosis'. I am not sure whether the echos or heart catheterization weren't accurate all those years.

In any case, celebrate the good news!

 

[Duffey]

Wonderful news! One never knows what life will bring!:smile2:

 

[BionicBuddy]

Hi Matbunch. I'm very happy to hear your good news!

A miracle? Very likely not. I'm not saying that miracles do not exist in medicine, they do. But I'd bet yours was a misdiagnosis.

I have the exact opposite experience. I've heard a loud murmur in my husband's chest since we started going out together in his teens. He saw his GP to check it out and his echo 30 years ago showed a "perfectly normal" heart. Thirty years and 4 echos later, he has BAV with aortic stenosis.

The last echo we had done was with a newbie tech and the radiologist wrote on the report: "probable BAV". All the other reports were clear, that my husband has a BAV.

The only truly definitive way of knowing whether it is tri-leaflet or bi-leaflet is when the valve is excised and examined post surgery.

However, hang on to your good news. Blessings come in many ways.

 

[Roxx]

Great news..... my first couple echos i ever had said "probably BAV"...... then the last one I had they got some great pictures and confirmed it is a tricuspid with 2 leaflets bigger than the 3rd...... i dont know if it really matters?

All i know is that I have a valve area of between 2.3 and 2.5cm (whatever that means) and I am suppose to have periodic folllw ups. ALL THIS STUFF scares me to death. I find comfort in how well so many of the members of this terrific forum are doing. That gives me hope that if I ever do need surgery, I will be ok.

 

[mom of 5]

While I hesitate to comment on miracles .... I will say this . My doctor also refers to my valve as a probable bicuspid valve most likely two of the valves are one misshaped one not just two regular valves with one missing .So in this regard most of the time God only knows ! I think a lot of us are lucky to be here with passing out on stairs or just long enough to believe our car breaks went out and not know at the time we were out for a moment and so on . It would be nice if we all had such faith in miracles ! Good luck to you and yours !

 

[rareed]

The same thing happened to me. I just got a new cardiologist in Kansas City - my old one was in Charlotte, NC. I was told and believed for 4 years that I had BAV. The new cardiologist says no BAV. She explained to me that if the previous echo's didn't have enough images it would seem like I have a BAV because two of the leaflets are partially fused (~1mm). I guess it's an easy mistake to make.

 

[Wise]

I still believe in the God of miracles. Great news for you! Congrats