cbdheartman
Well-known member
Dear All,
Thanks to those who have answered my previous questions. I wanted to post a little bit about my experience thus far in the hopes that I can help others and be corrected by others and my questions answered. I am sorry for the length but I think these details might be helpful.
I am a 31 male with two young kids. I have known that I have a bicuspid aortic valve since age 3 and have monitored it since then. I'd always been told that I'd likely have to have my valve replaced sometime in my 50s or 60s. Never was I told about the possibility of aortic aneurysms. In recent years, I have learned about aortic aneurysms on my own (why am I being sent for this CT-SCan, this MRI?).
My first CT-Scan was in 2004 and I don't even know what my measurement was then. I plan on finding out. My second CT-Scan was in 2006 and the report said my aortic root measured in at 4.8 cm. Last year, in 2008, I was sent for a chest MRI to measure the aorta and the root measured at 4.5 cm. This April I was sent for a cardiac MRI and this showed a root measurement of 5.2 cm. (My last two echos in 2007 and 2008 showed root measurements of 4.8 cm and 4.45 cm, respectively.)
After the latest MRI, my cardiologist was concerned and sent me to a surgeon. That surgeon recommended surgery for two reasons: 1) what he perceived to be a great rate of change in the size of the aneurysm; and 2) the absolute size. I have reason to believe that he did not look at the MRIs himself but based this solely on the reports. The second surgeon, the first surgeon's partner, looked at the MRIs himself and said that he did not believe there had been much change, if any, between 2008 and 2009 (though a problem I have discovered in this last month is being sent to different tests on different machines read by different people). He recommends surgery at 5.5 cm, but also thought surgery now would not be unreasonable. He believed he could spare my valve.
I also sent my information to Dr. Svensson at the Cleveland Clinic. Svensson had a similar assessment as the second surgeon, but he believed it would be good to do a consult there. So it was off to Cleveland where I spent Monday and Tuesday. (CC really is an incredible operation and facility. It is clean, well run, and the people are pleasant. The only unpleasantness were the other patients who cut in line and the 3 hour wait I had for Dr. Svensson.)
I did a full work-up at CC: chest x-ray, echo, CT-Scan, blood work, EKG, met with a cardiologist, his physician's assistant, did pulmonary function tests including blood work, and a holter monitor. I finally met with Svensson. The echos were showing readings consistent with the previous echos with my hometown cardiologist (at least that is what the tech told me) and the CT Scan came back at 4.9 cm. Svensson said that there is no standardization in how the aorta is measured, but that at CC they do standardize it. He said the best in the world measured the aorta and he trusted him implicitly. My aorta was measured the exact same way they measure every aorta that comes through. From what he said and my experience this past month, I see there is great variation in how they measure these things.
Svensson's recommendation against surgery stemmed from a number of different things: 1) he has his own formula to compute the cut-off and because I am 6'4'' his cut off is 5.1 or 5.2 cm rather than 5.0 cm (how they can even measure the difference is amazing to me); 2) he stated the risk of dissection/rupture at this size was under 1%; 3) he stated that the mortality risk of surgery is about 1%; 4) he was concerned about me ringing the bell of valve replacement now; in other words, beyond the risk of surgery, you have the attendant complications of a repaired or new valve. In either case, starting the clock means your possible second surgery is that much closer too. Svensson did believe he could repair my valve and said that after 10 years 91% of CC's patients who have had David Reimplantation have not had a second surgery. Of those who do require a second surgery, most require it within the first year to 18 months. Svensson did say he would do the surgery if I elected to do it -- and thought that not unreasonable for peace of mind issues. (Incidentally, I also learned from the cardiologist I met with that in Europe the protocols call for surgery at a lower threshold. This really is an "art" not a science.)
Another interesting thing Svensson told me is that while not documented, he and his cardiac surgeon colleagues, have noticed a degeneration of cognitive function over time in those with mechanical valves. This was the first I'd heard of that and something that will weigh heavily in my considerations going forward. I had been told by others: "You are young, you will need a mechanical valve."
I also asked Svensson about my risk of aneurysm in other parts of the body. He said that there are cases of those with BAVs who have cerebral aneurysms, but they seem to be independent events. He thought the problems would be limited to the ascending (and possibly descending) aorta.
If you are still reading, here are thoughts/questions that this month-long trial(?) has brought to me:
1) Cardiologists and surgeons very easily tell you to walk around with an aneurysm in your chest -- just wait for surgery! I think actually having an aneurysm is harder than that!
2) We as patients need to be educated and advocates for myself. The first surgeon I met with was recommending surgery based on likely faulty data and really minimized the problems associated with mechanical valves and surgery in general.
3) I don't understand why my cardiologist has sent me to so many different kinds of tests. I believe I have been disserved by these different tests at different places. If you are coming to this new, you need to insist on going to the same sort of test (if you are young probably cardiac MRIS) consistently. Chest MRIs are not gated to the heart beat so they are fuzzy and not very helpful images. If you are going the MRI route, I would insist on a cardiac MRI.
4) Amazingly there seems to be little standardization in how aortas are measured. The same image might be read/measured three different ways by three different people. The second surgeon read the cardiac MRI as a 5.0 or 5.1 as opposed to a 5.2 that the MRI report said. A friend of a friend read it at that lower range too.
5) A surgeon might only give you the options that you have. The first surgeon had a partner who does valve-sparing surgery, but didn't even think to suggest his partner as an option.
6) Now I am faced with being in a gray zone. In some sense, hearing the 4.9 cm measurement at Cleveland let me breathe easier. If my 2006 CT Scan is accurate, then I have grown a mm in just over 3 years. On the other hand, being in a gray zone makes me feel as if I am in a state of paralysis. My wife and I were making plans possibly to move or for me to change jobs. Do I do that now when next year my aneurysm could be at the magic number? If I were to start a new job, it would be awfully awkward to say two months into it, "Hey, I need to take 2 months off." (And what about the stress of a new job?!) Or if my aneurysm is stable or grows very slowly then I might have 6-9 years or even longer before surgery is necessary? Do I do the surgery while younger to ensure better odds? Will my valve be repairable in 10 years as seems to be now? And what about the psychological issues associated with having an aneurysm? If anyone has thoughts on how to negotiate these various questions, I would very much appreciate them. I feel a victim of whiplash. One day I am thinking I need surgery, then I am leaning towards it but believing I can wait, and now I am leaning against it.
I am sure I will have more thoughts as I go forward.
Thanks to those who have answered my previous questions. I wanted to post a little bit about my experience thus far in the hopes that I can help others and be corrected by others and my questions answered. I am sorry for the length but I think these details might be helpful.
I am a 31 male with two young kids. I have known that I have a bicuspid aortic valve since age 3 and have monitored it since then. I'd always been told that I'd likely have to have my valve replaced sometime in my 50s or 60s. Never was I told about the possibility of aortic aneurysms. In recent years, I have learned about aortic aneurysms on my own (why am I being sent for this CT-SCan, this MRI?).
My first CT-Scan was in 2004 and I don't even know what my measurement was then. I plan on finding out. My second CT-Scan was in 2006 and the report said my aortic root measured in at 4.8 cm. Last year, in 2008, I was sent for a chest MRI to measure the aorta and the root measured at 4.5 cm. This April I was sent for a cardiac MRI and this showed a root measurement of 5.2 cm. (My last two echos in 2007 and 2008 showed root measurements of 4.8 cm and 4.45 cm, respectively.)
After the latest MRI, my cardiologist was concerned and sent me to a surgeon. That surgeon recommended surgery for two reasons: 1) what he perceived to be a great rate of change in the size of the aneurysm; and 2) the absolute size. I have reason to believe that he did not look at the MRIs himself but based this solely on the reports. The second surgeon, the first surgeon's partner, looked at the MRIs himself and said that he did not believe there had been much change, if any, between 2008 and 2009 (though a problem I have discovered in this last month is being sent to different tests on different machines read by different people). He recommends surgery at 5.5 cm, but also thought surgery now would not be unreasonable. He believed he could spare my valve.
I also sent my information to Dr. Svensson at the Cleveland Clinic. Svensson had a similar assessment as the second surgeon, but he believed it would be good to do a consult there. So it was off to Cleveland where I spent Monday and Tuesday. (CC really is an incredible operation and facility. It is clean, well run, and the people are pleasant. The only unpleasantness were the other patients who cut in line and the 3 hour wait I had for Dr. Svensson.)
I did a full work-up at CC: chest x-ray, echo, CT-Scan, blood work, EKG, met with a cardiologist, his physician's assistant, did pulmonary function tests including blood work, and a holter monitor. I finally met with Svensson. The echos were showing readings consistent with the previous echos with my hometown cardiologist (at least that is what the tech told me) and the CT Scan came back at 4.9 cm. Svensson said that there is no standardization in how the aorta is measured, but that at CC they do standardize it. He said the best in the world measured the aorta and he trusted him implicitly. My aorta was measured the exact same way they measure every aorta that comes through. From what he said and my experience this past month, I see there is great variation in how they measure these things.
Svensson's recommendation against surgery stemmed from a number of different things: 1) he has his own formula to compute the cut-off and because I am 6'4'' his cut off is 5.1 or 5.2 cm rather than 5.0 cm (how they can even measure the difference is amazing to me); 2) he stated the risk of dissection/rupture at this size was under 1%; 3) he stated that the mortality risk of surgery is about 1%; 4) he was concerned about me ringing the bell of valve replacement now; in other words, beyond the risk of surgery, you have the attendant complications of a repaired or new valve. In either case, starting the clock means your possible second surgery is that much closer too. Svensson did believe he could repair my valve and said that after 10 years 91% of CC's patients who have had David Reimplantation have not had a second surgery. Of those who do require a second surgery, most require it within the first year to 18 months. Svensson did say he would do the surgery if I elected to do it -- and thought that not unreasonable for peace of mind issues. (Incidentally, I also learned from the cardiologist I met with that in Europe the protocols call for surgery at a lower threshold. This really is an "art" not a science.)
Another interesting thing Svensson told me is that while not documented, he and his cardiac surgeon colleagues, have noticed a degeneration of cognitive function over time in those with mechanical valves. This was the first I'd heard of that and something that will weigh heavily in my considerations going forward. I had been told by others: "You are young, you will need a mechanical valve."
I also asked Svensson about my risk of aneurysm in other parts of the body. He said that there are cases of those with BAVs who have cerebral aneurysms, but they seem to be independent events. He thought the problems would be limited to the ascending (and possibly descending) aorta.
If you are still reading, here are thoughts/questions that this month-long trial(?) has brought to me:
1) Cardiologists and surgeons very easily tell you to walk around with an aneurysm in your chest -- just wait for surgery! I think actually having an aneurysm is harder than that!
2) We as patients need to be educated and advocates for myself. The first surgeon I met with was recommending surgery based on likely faulty data and really minimized the problems associated with mechanical valves and surgery in general.
3) I don't understand why my cardiologist has sent me to so many different kinds of tests. I believe I have been disserved by these different tests at different places. If you are coming to this new, you need to insist on going to the same sort of test (if you are young probably cardiac MRIS) consistently. Chest MRIs are not gated to the heart beat so they are fuzzy and not very helpful images. If you are going the MRI route, I would insist on a cardiac MRI.
4) Amazingly there seems to be little standardization in how aortas are measured. The same image might be read/measured three different ways by three different people. The second surgeon read the cardiac MRI as a 5.0 or 5.1 as opposed to a 5.2 that the MRI report said. A friend of a friend read it at that lower range too.
5) A surgeon might only give you the options that you have. The first surgeon had a partner who does valve-sparing surgery, but didn't even think to suggest his partner as an option.
6) Now I am faced with being in a gray zone. In some sense, hearing the 4.9 cm measurement at Cleveland let me breathe easier. If my 2006 CT Scan is accurate, then I have grown a mm in just over 3 years. On the other hand, being in a gray zone makes me feel as if I am in a state of paralysis. My wife and I were making plans possibly to move or for me to change jobs. Do I do that now when next year my aneurysm could be at the magic number? If I were to start a new job, it would be awfully awkward to say two months into it, "Hey, I need to take 2 months off." (And what about the stress of a new job?!) Or if my aneurysm is stable or grows very slowly then I might have 6-9 years or even longer before surgery is necessary? Do I do the surgery while younger to ensure better odds? Will my valve be repairable in 10 years as seems to be now? And what about the psychological issues associated with having an aneurysm? If anyone has thoughts on how to negotiate these various questions, I would very much appreciate them. I feel a victim of whiplash. One day I am thinking I need surgery, then I am leaning towards it but believing I can wait, and now I am leaning against it.
I am sure I will have more thoughts as I go forward.
