sood
Well-known member
Hi All,
What a great site this is, it has helped me a lot over the past few days after I discovered it. I'm a 35 year old male, diagnosed with Aortic stenosis with mild regurgitation when I was 23. Have usually had echo's every 2 years until last year when I saw my primary doc and said I felt a little discomfort while running. He referred me to a cardiologist. Had my first CT scan and did a stress echo, also found out around this time I had a ascending aortic aneurysm of 4.8 cm. He determined my pain which only happened that one time during running must have been musculo/skeletal. This year I had him give me an MRI because I am afraid of the radiation on ct scans. That showed 4.9 cm dialation of the aneurysm. Basically getting scarier but still could be no change from last years CT scan do to margin of error. He referred me to talk with a cardiac surgeon just to see what he would say. Before he sent me he said "I don't think you need surgery just yet". We met yesterday with the cardiac surgeon and got a lot of wonderful information.
First surprise I learned yesterday was all this time I was under the impression I had a bicuspid aortic valve, but my normal cardiologist who happened to review my last echo (I do the echo's where he works and he was assigned the echo to interpret) concluded that he is not positive I have a bicuspid valve based on the latest echo done a few months ago. The cardiologist never told me this, only the surgeon did today while reading his notes. The cardiologist thinks I might have a tricuspid valve but that the shape or pattern of it is abnormal. They basically can't tell without cutting me open. Why is this important? Because with a tricuspid valve the cut-off for surgery is a 5.5 cm aneurysm where a bicuspid the cut-off is 5.0 cm. My aortic stenosis has remarkably experienced no change in 12 years, with the peak gradient at 29. Cardiac surgeon said they look for a gradient of 50 for operative candidates. I've done a lot of research on the cardiac surgeon and he has done very well on the CABG reports here in california which report mortality for bypass type surgeries and he suggested to me that I wait to have the surgery and they continue to monitor the situation with annual CT or mri. The surgeon is also the head Cardiac person for their transplants with only a 2.0% mortality rate on that. He recommended the CT scan in the future because he said it was more accurate but I said maybe I can do a CT every other year and MRI the alternate year, still citing radiation fears. He also told me that if he were to do the surgery today and he cut me open and saw I had a tricuspid valve he would be inclined not to repair it at this time. He told me the risk factors of having the aneurysm and waiting vs the risk factors of having the surgery are about the same and that with the surgery I would have added risk of taking coumadin afterwards and what that does to the body long term as well. He also said he uses on-x valves and that if I had the surgery now I would never need another valve and that it would last forever, he said there are trials going on with the on-x valve that patients are only using aspirin for the blood thinner. And he said if I waited a few years who knows what more medicial advancements would occur in the field.
Anyway at this point I'm just going to digest all of this and not make any rushed decisions. I was very comfortable with the surgeon, he spoke with us for almost an hour and answered all my approximately 25 questions. I'm going to do more research on coumadin as well and evaluate getting the surgery now vs later.
What would you do if you were in my shoes? I know a lot of you would do the operation.
I am able to exercise without issue, although I can't lift weights anymore. I do sometimes(rarely) have chest discomfort primarily when I am stressed out. If the aneurysm didn't crop up I would be fine waiting out surgery. I still have to have them look through my past echo's and find out what the older readings might have been for the aortic root measurement. If prior to my 2011 echo's the aneurysm didn't show up, I have a very bad feeling that it might have started late in 2010 when I took sudafed for a cold and ended up in the ER with bad chest pain. The ER doctor said the stimulant in some meds bothers people and the surgeon confirmed it today saying it probably made my heart muscle work harder and as a result I was having the chest pain. I didn't tell him about my theory of this possibly leading to the aneurysm, I thought of that later. I have no idea about that it is a wild guess but I'll have to get my past echo results to see if that is when they started, because no one said the aneurysm word to me prior to 2011. The surgeon also said sometimes the aneurysms plateau for several years and don't change. And if I just decided to repair the aneurysm only he will use a graft and it would be a piece of cake and take only an hour.
Thanks for listening and look forward to your thoughts.
What a great site this is, it has helped me a lot over the past few days after I discovered it. I'm a 35 year old male, diagnosed with Aortic stenosis with mild regurgitation when I was 23. Have usually had echo's every 2 years until last year when I saw my primary doc and said I felt a little discomfort while running. He referred me to a cardiologist. Had my first CT scan and did a stress echo, also found out around this time I had a ascending aortic aneurysm of 4.8 cm. He determined my pain which only happened that one time during running must have been musculo/skeletal. This year I had him give me an MRI because I am afraid of the radiation on ct scans. That showed 4.9 cm dialation of the aneurysm. Basically getting scarier but still could be no change from last years CT scan do to margin of error. He referred me to talk with a cardiac surgeon just to see what he would say. Before he sent me he said "I don't think you need surgery just yet". We met yesterday with the cardiac surgeon and got a lot of wonderful information.
First surprise I learned yesterday was all this time I was under the impression I had a bicuspid aortic valve, but my normal cardiologist who happened to review my last echo (I do the echo's where he works and he was assigned the echo to interpret) concluded that he is not positive I have a bicuspid valve based on the latest echo done a few months ago. The cardiologist never told me this, only the surgeon did today while reading his notes. The cardiologist thinks I might have a tricuspid valve but that the shape or pattern of it is abnormal. They basically can't tell without cutting me open. Why is this important? Because with a tricuspid valve the cut-off for surgery is a 5.5 cm aneurysm where a bicuspid the cut-off is 5.0 cm. My aortic stenosis has remarkably experienced no change in 12 years, with the peak gradient at 29. Cardiac surgeon said they look for a gradient of 50 for operative candidates. I've done a lot of research on the cardiac surgeon and he has done very well on the CABG reports here in california which report mortality for bypass type surgeries and he suggested to me that I wait to have the surgery and they continue to monitor the situation with annual CT or mri. The surgeon is also the head Cardiac person for their transplants with only a 2.0% mortality rate on that. He recommended the CT scan in the future because he said it was more accurate but I said maybe I can do a CT every other year and MRI the alternate year, still citing radiation fears. He also told me that if he were to do the surgery today and he cut me open and saw I had a tricuspid valve he would be inclined not to repair it at this time. He told me the risk factors of having the aneurysm and waiting vs the risk factors of having the surgery are about the same and that with the surgery I would have added risk of taking coumadin afterwards and what that does to the body long term as well. He also said he uses on-x valves and that if I had the surgery now I would never need another valve and that it would last forever, he said there are trials going on with the on-x valve that patients are only using aspirin for the blood thinner. And he said if I waited a few years who knows what more medicial advancements would occur in the field.
Anyway at this point I'm just going to digest all of this and not make any rushed decisions. I was very comfortable with the surgeon, he spoke with us for almost an hour and answered all my approximately 25 questions. I'm going to do more research on coumadin as well and evaluate getting the surgery now vs later.
What would you do if you were in my shoes? I know a lot of you would do the operation.
I am able to exercise without issue, although I can't lift weights anymore. I do sometimes(rarely) have chest discomfort primarily when I am stressed out. If the aneurysm didn't crop up I would be fine waiting out surgery. I still have to have them look through my past echo's and find out what the older readings might have been for the aortic root measurement. If prior to my 2011 echo's the aneurysm didn't show up, I have a very bad feeling that it might have started late in 2010 when I took sudafed for a cold and ended up in the ER with bad chest pain. The ER doctor said the stimulant in some meds bothers people and the surgeon confirmed it today saying it probably made my heart muscle work harder and as a result I was having the chest pain. I didn't tell him about my theory of this possibly leading to the aneurysm, I thought of that later. I have no idea about that it is a wild guess but I'll have to get my past echo results to see if that is when they started, because no one said the aneurysm word to me prior to 2011. The surgeon also said sometimes the aneurysms plateau for several years and don't change. And if I just decided to repair the aneurysm only he will use a graft and it would be a piece of cake and take only an hour.
Thanks for listening and look forward to your thoughts.