tmatheny
02-06-2008, 02:32 AM
Hello,
I’ve posted several times, starting in 2005, and again a couple of months ago. My diagnosis has been confusing, with differing assessments and advice from numerous cardiologists (including advice to get psychiatric evaluation). I'm 52 years old, with symptom onset 4 years ago.
I’m happy and satisfied that I have finally seen Dr. Lever and Dr. Smedira in Cleveland. They are wonderful. I am scheduled for surgery Feb 18.
I don’t have typical hypertrophic cardiomyopathy. But they are calling it hypertrophic cardiomyopathy, because it produces problems like the usual HCM and there isn’t another established diagnosis that fits, and the treatment goal is similar, to relieve obstruction.
I have atypical chest pain, atypical shortness of breath, exhaustion, light headedness, heart murmur, and some abnormal tests. No gradient at rest, but a gradient of 100 with exercise; there is mitral regurg, and systolic anterior motion. My exercise tolerance is better than expected, even with the chest pain. Septal hypertrophy is not that much compared to many others with hcm; my proximal septum is 12 mm on echo and 16 mm on MRI. I came up negative on genetic testing.
The problem is that one of the papillary muscles of my mitral valve is not properly located. The net effect is that when the heart has more demands put on it, the valve leaflets do not line up properly. This causes systolic anterior motion, obstruction, gradient, and symptoms develop.
One option is to have an artificial valve placed. Another option is to do a procedure where they re-locate the papillary muscle to a new spot that lines the valve up so it can work properly. Dr. Smedira will do this procedure, but he’ll make the judgement call during surgery and put a new valve in if it is needed. There may be the possibility that the papillary procedure would not hold, and I'd still need a new valve at a later date.
He will also remove areas of significant hypertrophy if this is identified during surgery, but what is going to be most helpful with the obstruction and gradient is to fix the valve.
What a relief to be in the hands of someone who has seen this before, knows what to do, and explained it to me so I could understand. I have looked back at the threads about myectomy, and I know many of you can relate to this.
I am looking forward to the surgery (sounds strange to be saying that), because I anticipate relief many or all of my symptoms. And I'm feeling some jitters and stagefright during this count-down period. It is so helpful to read of myectomy experiences many of you have had. And it is helpful to know I have top notch people who will be working on me.
Many heartfelt thanks to this website for being a resource, and to Lisa for her guidance and suggestions.
Sincerely,
Theo
I’ve posted several times, starting in 2005, and again a couple of months ago. My diagnosis has been confusing, with differing assessments and advice from numerous cardiologists (including advice to get psychiatric evaluation). I'm 52 years old, with symptom onset 4 years ago.
I’m happy and satisfied that I have finally seen Dr. Lever and Dr. Smedira in Cleveland. They are wonderful. I am scheduled for surgery Feb 18.
I don’t have typical hypertrophic cardiomyopathy. But they are calling it hypertrophic cardiomyopathy, because it produces problems like the usual HCM and there isn’t another established diagnosis that fits, and the treatment goal is similar, to relieve obstruction.
I have atypical chest pain, atypical shortness of breath, exhaustion, light headedness, heart murmur, and some abnormal tests. No gradient at rest, but a gradient of 100 with exercise; there is mitral regurg, and systolic anterior motion. My exercise tolerance is better than expected, even with the chest pain. Septal hypertrophy is not that much compared to many others with hcm; my proximal septum is 12 mm on echo and 16 mm on MRI. I came up negative on genetic testing.
The problem is that one of the papillary muscles of my mitral valve is not properly located. The net effect is that when the heart has more demands put on it, the valve leaflets do not line up properly. This causes systolic anterior motion, obstruction, gradient, and symptoms develop.
One option is to have an artificial valve placed. Another option is to do a procedure where they re-locate the papillary muscle to a new spot that lines the valve up so it can work properly. Dr. Smedira will do this procedure, but he’ll make the judgement call during surgery and put a new valve in if it is needed. There may be the possibility that the papillary procedure would not hold, and I'd still need a new valve at a later date.
He will also remove areas of significant hypertrophy if this is identified during surgery, but what is going to be most helpful with the obstruction and gradient is to fix the valve.
What a relief to be in the hands of someone who has seen this before, knows what to do, and explained it to me so I could understand. I have looked back at the threads about myectomy, and I know many of you can relate to this.
I am looking forward to the surgery (sounds strange to be saying that), because I anticipate relief many or all of my symptoms. And I'm feeling some jitters and stagefright during this count-down period. It is so helpful to read of myectomy experiences many of you have had. And it is helpful to know I have top notch people who will be working on me.
Many heartfelt thanks to this website for being a resource, and to Lisa for her guidance and suggestions.
Sincerely,
Theo