J
jbrown413
i originally posted this on the post surgery section, but now realize maybe it is better suited here, since i am 11 years post surgery...
i last wrote earlier this year. i reported
-- how i had had a st jude aorta replacement back in 1995.
-- how i had been told after my second post-op echo (3.1 yrs post-op) that everything was fine and that i did not need a cardiologist any more.
-- about how over the past 6 years many other docs have often seemed surprised that i didnt have a cardiologist
-- about how i had made an appointment with the cardiologist who had done the 1999 echo to get a follow-up
-- and i asked what i should be looking for.
i got some great responses telling me that bicuspid aorta valves are related to general failure of the aorta, resulting in aneurysms. when i saw him i asked for a repeat echo, explaining what i had heard. he seemed to be completely unaware of this, and was somewhat reluctant to do a repeat echo. in fact, he never scheduled me for the echo. (he also said he "didnt know anything about toothbrushes" when i asked about home ultrasound systems for plaque removal. (maybe i shouldve know then that something was wrong.))
anyway, since he seemed so unconcerned, and since it was golf season, i put off the echo till about 2 weeks ago. i had to tell the tech that i also wanted her to look at the aorta for dilation. at the end of the echo i was told my aorta was indeed dilated, and i was rushed downstairs to make a ct appointment, which was done a week later. of course, in the week i did some more research, and found that 5.5 cm seems to be the point where surgery is done.
well after waiting another 4 days, i am finally told that my aotirc root measures 5.8 cm!!! i am furious about this! i now understand that if we had been monitoring all along, we'd have a better idea of the speed of progression, not to mention i couldve been on a beta blocker which might have slowed progression.
on top of that, i got a copy of my first echo with this guy, and it said then that there was slight dilation!!! that was the time he told me i didnt need a cardiologist anymore!!! from what i understand right now, that first sign of dilation shouldve been the flag to get my first of many ct's to keep closer track of progression.
well, aside from sharing my woes, i guess i'd really like it if anyone can tell me where my theorizing here is off base. have others heard the 5.5 cm as being the cut-off for surgery? have others been sent for ct's after the first sign of dilation? has anyone else ever been told they didnt need a cardiologist?
also, in thinking about doing more surgery,(which sounds like its pretty inevitable, (unless of course i pop first)), i have come across the massachusetts general hospital aorta surgery center in boston. i live in springfield, ma, about 2 hours away. has anyone been there? how was it? is it worth it, or should i go back to my last surgeon, who seemed to do a good job on the valve implantation. how much more involved, risky, etc, is an aorta root graft as compared to an aorta valve replacement, especially considering i already have an AVR? does anyone have any web links to this type of info?
i thank you all in advance for your thoughts. i will hopefully see my last surgeon, and maybe MGH's in the next week or two. i will keep you posted, and thanks again. -- joe
i last wrote earlier this year. i reported
-- how i had had a st jude aorta replacement back in 1995.
-- how i had been told after my second post-op echo (3.1 yrs post-op) that everything was fine and that i did not need a cardiologist any more.
-- about how over the past 6 years many other docs have often seemed surprised that i didnt have a cardiologist
-- about how i had made an appointment with the cardiologist who had done the 1999 echo to get a follow-up
-- and i asked what i should be looking for.
i got some great responses telling me that bicuspid aorta valves are related to general failure of the aorta, resulting in aneurysms. when i saw him i asked for a repeat echo, explaining what i had heard. he seemed to be completely unaware of this, and was somewhat reluctant to do a repeat echo. in fact, he never scheduled me for the echo. (he also said he "didnt know anything about toothbrushes" when i asked about home ultrasound systems for plaque removal. (maybe i shouldve know then that something was wrong.))
anyway, since he seemed so unconcerned, and since it was golf season, i put off the echo till about 2 weeks ago. i had to tell the tech that i also wanted her to look at the aorta for dilation. at the end of the echo i was told my aorta was indeed dilated, and i was rushed downstairs to make a ct appointment, which was done a week later. of course, in the week i did some more research, and found that 5.5 cm seems to be the point where surgery is done.
well after waiting another 4 days, i am finally told that my aotirc root measures 5.8 cm!!! i am furious about this! i now understand that if we had been monitoring all along, we'd have a better idea of the speed of progression, not to mention i couldve been on a beta blocker which might have slowed progression.
on top of that, i got a copy of my first echo with this guy, and it said then that there was slight dilation!!! that was the time he told me i didnt need a cardiologist anymore!!! from what i understand right now, that first sign of dilation shouldve been the flag to get my first of many ct's to keep closer track of progression.
well, aside from sharing my woes, i guess i'd really like it if anyone can tell me where my theorizing here is off base. have others heard the 5.5 cm as being the cut-off for surgery? have others been sent for ct's after the first sign of dilation? has anyone else ever been told they didnt need a cardiologist?
also, in thinking about doing more surgery,(which sounds like its pretty inevitable, (unless of course i pop first)), i have come across the massachusetts general hospital aorta surgery center in boston. i live in springfield, ma, about 2 hours away. has anyone been there? how was it? is it worth it, or should i go back to my last surgeon, who seemed to do a good job on the valve implantation. how much more involved, risky, etc, is an aorta root graft as compared to an aorta valve replacement, especially considering i already have an AVR? does anyone have any web links to this type of info?
i thank you all in advance for your thoughts. i will hopefully see my last surgeon, and maybe MGH's in the next week or two. i will keep you posted, and thanks again. -- joe
