Well as the line goes on Finding Nemo......good feeling is gone! I was born with a CoA, VSD and BAV......but I didn't know about the BAV until I was in my 20's...during my first echo to determine if it was OK to have children.
Until recently, I haven't seen a cardiologist that specializes in Adults with congenital heart defects. Since a few years after my CoA repair....I've been followed up with a regular cardiologist. Sometimes.....I've neglected my yearly cardio visits alltogether.....thinking I've been repaired for good! About two months ago...I discovered the truth about BAV.... and the importance of followups by a cardiologist that is checking me thoroughly.
Recently I posted about an apparent misdiagnosis. I had an MRI....that seemed to show a 3 leaflet aortic valve. So.....maybe I do not have BAV.
It was an exciting few days.....until I called my doctor and talked to him directly. The echo that he took....showed undoubtedly a BAV....but the MRI did not....apparently...he thinks the MRI pictures were not sliced thinly enough to visualize the BAV clearly. He said I undoubtedly have a BAV.
But on the positive side....The MRI shows no recoarctation and no dialation of the aortic root, or ascending aorta. Regurgitation is trivial....and upon his recommendation....I took all three of my children to get echoes....and they were all normal.
After all this.....I'm exhausted from the stress! Nothing he found explains my recent symptoms (SOB, fatigue), so I still need a stress test. This should determine if my BP rises too much during exercise.
Anybody else had an MRI that missed the BAV? I never expected it....nor can I really explain it. I hope it was right about the aorta!
Thanks for listening and responding and helping me through all this! Phew....what would we do without the internet?
Until recently, I haven't seen a cardiologist that specializes in Adults with congenital heart defects. Since a few years after my CoA repair....I've been followed up with a regular cardiologist. Sometimes.....I've neglected my yearly cardio visits alltogether.....thinking I've been repaired for good! About two months ago...I discovered the truth about BAV.... and the importance of followups by a cardiologist that is checking me thoroughly.
Recently I posted about an apparent misdiagnosis. I had an MRI....that seemed to show a 3 leaflet aortic valve. So.....maybe I do not have BAV.
It was an exciting few days.....until I called my doctor and talked to him directly. The echo that he took....showed undoubtedly a BAV....but the MRI did not....apparently...he thinks the MRI pictures were not sliced thinly enough to visualize the BAV clearly. He said I undoubtedly have a BAV.
But on the positive side....The MRI shows no recoarctation and no dialation of the aortic root, or ascending aorta. Regurgitation is trivial....and upon his recommendation....I took all three of my children to get echoes....and they were all normal.
After all this.....I'm exhausted from the stress! Nothing he found explains my recent symptoms (SOB, fatigue), so I still need a stress test. This should determine if my BP rises too much during exercise.
Anybody else had an MRI that missed the BAV? I never expected it....nor can I really explain it. I hope it was right about the aorta!
Thanks for listening and responding and helping me through all this! Phew....what would we do without the internet?
