cbdheartman
Well-known member
Hello there,
I am new to the forum. A bit of background: I am 31-year old male, 6 ft, 4 in, tall, diagnosed with BAV at age 3; I have mild/moderate aortic insufficiency. My reports say I have LVOT + 2 aortic insufficiency, no stenosis.
In recent years, we've watching the aortic root and ascending root. Unfortunately, we've followed it with a number of different tests. In 2006, a CT-Scan showed the root at 4.8 cm and the ascending aorta by the right pulmonary artery to be 3.9 cm.
A regular chest MRI last year showed these measurements at 4.5 and 3.7.
This year I was sent for a cardiac MRI and this report showed at diameter of 5.2 cm at the root and 2.9 at the right brachiocephalic artery (which I assume is the right pulmonary artery?).
A surgeon last week who viewed the MRIs himself said, despite the MRI reports, that he did not believe there had been much change in the past year and believes I am 5.0 or 5.1 at the root rather than 5.2. (The change from 2006 would be, he said, consistent with a typical 1 mm a year change.)
I have now visited with 2 surgeons and sent my materials to a doctor at the Cleveland Clinic. The first surgeon said to have surgery within the year. The second, who does valve-sparing surgery, said he thought I was more in a gray zone and does not recommend surgery until my root reaches 5.5 cm (though surgery now is not unreasonable according to him). The Cleveland Clinic's assistant said that he doesn't recommend surgery yet either, but would like me to come in for an evaluation.
This gets me to my questions and I will throw a few out there.
1. Does anyone know why surgeons would be recommending that I wait? Is it because the risk of surgery is higher than the risk of the aneurysm dissecting or rupturing?
2. Why would I wait? I am weighed down with thoughts of the aneurysm bursting among other things.
3. I am getting different advice on what limits to adhere to in my daily activities. My cardiologist said to refrain from exercise and lifting (obviously I've been avoiding heavy weight lifting for years anyway). The first surgeon said not to get my heart rate up, but another surgeon said I could do 20 minutes of light running on the treadmill. I am erring on the side of caution right now, but I was wondering if anyone else faced with similar situations could provide advice.
4. Do aneurysms such as mine ever stop growing or can they ever repair themselves? If I wait on having surgery, is there any hope that the aneurysm will simply stabilize and not continue to grow? Or am I just in a waiting game where some day the aneurysm (unless something bad happens) will reach the magic number of 5.5 cm and then I will have to have surgery? (If that is the case, again I wonder why I shouldn't go ahead and have it now.)
5. One possibility I have heard is valve-sparing surgery. Obviously the valve can deteriorate over time: so is this a reason to go forward with the surgery now rather than later?
6. Does anyone have any experience with this sort of surgery at the Washington Hospital Center or Johns Hopkins? I am also considering the Cleveland Clinic, but that is farther away from where I am now.
7. Does anyone have general thoughts on the situation I am facing, the David-valve sparing procedure, and where to have such a surgery?
8. Does anyone have any personal experience with one of these three surgeons: Ammar Bafi, Washington Hospital Center; Duke Cameron, Hopkins; Lars Svensson, Cleveland Clinic.
I welcome any and all thoughts. I am married with two small kids and this latest development in my health seems to be paralyzing us as we make decisions. It almost seems worse to be in the gray zone than to be in a position to say just do the surgery.
I am new to the forum. A bit of background: I am 31-year old male, 6 ft, 4 in, tall, diagnosed with BAV at age 3; I have mild/moderate aortic insufficiency. My reports say I have LVOT + 2 aortic insufficiency, no stenosis.
In recent years, we've watching the aortic root and ascending root. Unfortunately, we've followed it with a number of different tests. In 2006, a CT-Scan showed the root at 4.8 cm and the ascending aorta by the right pulmonary artery to be 3.9 cm.
A regular chest MRI last year showed these measurements at 4.5 and 3.7.
This year I was sent for a cardiac MRI and this report showed at diameter of 5.2 cm at the root and 2.9 at the right brachiocephalic artery (which I assume is the right pulmonary artery?).
A surgeon last week who viewed the MRIs himself said, despite the MRI reports, that he did not believe there had been much change in the past year and believes I am 5.0 or 5.1 at the root rather than 5.2. (The change from 2006 would be, he said, consistent with a typical 1 mm a year change.)
I have now visited with 2 surgeons and sent my materials to a doctor at the Cleveland Clinic. The first surgeon said to have surgery within the year. The second, who does valve-sparing surgery, said he thought I was more in a gray zone and does not recommend surgery until my root reaches 5.5 cm (though surgery now is not unreasonable according to him). The Cleveland Clinic's assistant said that he doesn't recommend surgery yet either, but would like me to come in for an evaluation.
This gets me to my questions and I will throw a few out there.
1. Does anyone know why surgeons would be recommending that I wait? Is it because the risk of surgery is higher than the risk of the aneurysm dissecting or rupturing?
2. Why would I wait? I am weighed down with thoughts of the aneurysm bursting among other things.
3. I am getting different advice on what limits to adhere to in my daily activities. My cardiologist said to refrain from exercise and lifting (obviously I've been avoiding heavy weight lifting for years anyway). The first surgeon said not to get my heart rate up, but another surgeon said I could do 20 minutes of light running on the treadmill. I am erring on the side of caution right now, but I was wondering if anyone else faced with similar situations could provide advice.
4. Do aneurysms such as mine ever stop growing or can they ever repair themselves? If I wait on having surgery, is there any hope that the aneurysm will simply stabilize and not continue to grow? Or am I just in a waiting game where some day the aneurysm (unless something bad happens) will reach the magic number of 5.5 cm and then I will have to have surgery? (If that is the case, again I wonder why I shouldn't go ahead and have it now.)
5. One possibility I have heard is valve-sparing surgery. Obviously the valve can deteriorate over time: so is this a reason to go forward with the surgery now rather than later?
6. Does anyone have any experience with this sort of surgery at the Washington Hospital Center or Johns Hopkins? I am also considering the Cleveland Clinic, but that is farther away from where I am now.
7. Does anyone have general thoughts on the situation I am facing, the David-valve sparing procedure, and where to have such a surgery?
8. Does anyone have any personal experience with one of these three surgeons: Ammar Bafi, Washington Hospital Center; Duke Cameron, Hopkins; Lars Svensson, Cleveland Clinic.
I welcome any and all thoughts. I am married with two small kids and this latest development in my health seems to be paralyzing us as we make decisions. It almost seems worse to be in the gray zone than to be in a position to say just do the surgery.