Mended Hearts Open Forum

Hi Mollie,

I responded to you privately regarding CC, but I forgot to mention: Toward the end they alternated echo/MRI on me. I insisted on the MRI vs. CT until just pre-surgery to avoid the extra radiation. There is a single MRI machine at Scripps here in San Diego that could do heart MRIs without any contrast, which was also a preference of mine - given some concerns for MRI contrast. Between that and the echos they got a good enough look. I did that at least 2x a year - at one point I think I was getting scanned every few months. At Cleveland, depending on your size, at 5.0 they go. If you haven't seen it, Dr. Roselli at CC has a great video on his site that explains why 5.0 is the number. The shorter you are, the earlier <5.0. It has to do with a calculation they do. My doctors here in San Diego started taking this very seriously when I hit 4.8. But the funny thing is - when I went to Cleveland for my final review it was my valve, not my aorta, that determined the surgery. At the time of surgery it measured 4.9. As always, it's case-by-case. The thing about CC - they have this down, and there are surgeons there who specialize in the aorta. Roselli is one. My surgeon was Dr. Svensson. And for what it's worth: I had been getting second opinions there on my situation for several years. At the very end, my doctor here had suggested waiting another three months for the next scan. I was listening to my body, and IT said - send the stuff to Cleveland, which I did. This time they had me fly in for an in-person consult. Less than a month later I was back for the main event. Herb

Hi all,
I've been following the very informative dialogue between Mollie and all of you. Im meeting with my cardio thoracic surgeon in a few weeks to discuss a prosthetic valve choice and date for re-surgery of my 12 year old bovine prosthetic aortic valve. It's served me well but is now at the end/ stenotic. After much consideration, I've decided on open surgery rather than TAVR. I also have a 4.1 ascending aortic aneurysm, but it has not expanded in the last 2 years (stable.) The cardio team has advised me I may never need surgery on the aneurysm, but I am persistent to ask for  echos to monitor it.

I have a question for Herb… couldn't figure out how to send a private message, so public is fine for the benefit of others!! 
Herb, may I ask who your San Diego cardio-team is? I believe it's Scripps as you mentioned a CT machine located there. I'm with Sharp here in San Diego. Surgery would be done at Sharp Memorial… same surgeon from 12 years ago. My cardiologist for 13 years is the head of cardiology and president of the medical group, but there are only 2 surgeons ( for my type of procedure) to choose from. I'm on a very tight fixed income, so flying to Cleveland is not even an option and getting a second opinion would be a stretch for my budget. That being said, I am curious who your health providers are. Scripps is rated far above Sharp for cardiovascular procedures, It seems I may need a second opinion -- based on your decision to get a second opinion even though you are with a highly rated medical/cardiac group. Just trying to weigh out my options, like so many of us are. 

Thank you in advance for any input!! 
(please excuse any typos or grammar errors) 

Hi Mollie,

I responded to you privately regarding CC, but I forgot to mention: Toward the end they alternated echo/MRI on me. I insisted on the MRI vs. CT until just pre-surgery to avoid the extra radiation. There is a single MRI machine at Scripps here in San Diego that could do heart MRIs without any contrast, which was also a preference of mine - given some concerns for MRI contrast. Between that and the echos they got a good enough look. I did that at least 2x a year - at one point I think I was getting scanned every few months. At Cleveland, depending on your size, at 5.0 they go. If you haven't seen it, Dr. Roselli at CC has a great video on his site that explains why 5.0 is the number. The shorter you are, the earlier <5.0. It has to do with a calculation they do. My doctors here in San Diego started taking this very seriously when I hit 4.8. But the funny thing is - when I went to Cleveland for my final review it was my valve, not my aorta, that determined the surgery. At the time of surgery it measured 4.9. As always, it's case-by-case. The thing about CC - they have this down, and there are surgeons there who specialize in the aorta. Roselli is one. My surgeon was Dr. Svensson. And for what it's worth: I had been getting second opinions there on my situation for several years. At the very end, my doctor here had suggested waiting another three months for the next scan. I was listening to my body, and IT said - send the stuff to Cleveland, which I did. This time they had me fly in for an in-person consult. Less than a month later I was back for the main event. Herb

Hi Debi, check your email! ;-)

Hi all,
I've been following the very informative dialogue between Mollie and all of you. Im meeting with my cardio thoracic surgeon in a few weeks to discuss a prosthetic valve choice and date for re-surgery of my 12 year old bovine prosthetic aortic valve. It's served me well but is now at the end/ stenotic. After much consideration, I've decided on open surgery rather than TAVR. I also have a 4.1 ascending aortic aneurysm, but it has not expanded in the last 2 years (stable.) The cardio team has advised me I may never need surgery on the aneurysm, but I am persistent to ask for  echos to monitor it.

I have a question for Herb… couldn't figure out how to send a private message, so public is fine for the benefit of others!! 
Herb, may I ask who your San Diego cardio-team is? I believe it's Scripps as you mentioned a CT machine located there. I'm with Sharp here in San Diego. Surgery would be done at Sharp Memorial… same surgeon from 12 years ago. My cardiologist for 13 years is the head of cardiology and president of the medical group, but there are only 2 surgeons ( for my type of procedure) to choose from. I'm on a very tight fixed income, so flying to Cleveland is not even an option and getting a second opinion would be a stretch for my budget. That being said, I am curious who your health providers are. Scripps is rated far above Sharp for cardiovascular procedures, It seems I may need a second opinion -- based on your decision to get a second opinion even though you are with a highly rated medical/cardiac group. Just trying to weigh out my options, like so many of us are. 

Thank you in advance for any input!! 
(please excuse any typos or grammar errors) 

Hi Mollie,

I responded to you privately regarding CC, but I forgot to mention: Toward the end they alternated echo/MRI on me. I insisted on the MRI vs. CT until just pre-surgery to avoid the extra radiation. There is a single MRI machine at Scripps here in San Diego that could do heart MRIs without any contrast, which was also a preference of mine - given some concerns for MRI contrast. Between that and the echos they got a good enough look. I did that at least 2x a year - at one point I think I was getting scanned every few months. At Cleveland, depending on your size, at 5.0 they go. If you haven't seen it, Dr. Roselli at CC has a great video on his site that explains why 5.0 is the number. The shorter you are, the earlier <5.0. It has to do with a calculation they do. My doctors here in San Diego started taking this very seriously when I hit 4.8. But the funny thing is - when I went to Cleveland for my final review it was my valve, not my aorta, that determined the surgery. At the time of surgery it measured 4.9. As always, it's case-by-case. The thing about CC - they have this down, and there are surgeons there who specialize in the aorta. Roselli is one. My surgeon was Dr. Svensson. And for what it's worth: I had been getting second opinions there on my situation for several years. At the very end, my doctor here had suggested waiting another three months for the next scan. I was listening to my body, and IT said - send the stuff to Cleveland, which I did. This time they had me fly in for an in-person consult. Less than a month later I was back for the main event. Herb

Hi Mollie

I think that is what I did in 2019. My wife wanted me to get a second opinion from CC so she got in touch with them and they had us send every scan/test/medical record that we had. Then they have their surgical team review the case and assign a surgeon based on procedure needed, schedule, urgency, etc. 

I was told locally that I would need to just monitor every 6 months or so and eventually would need a valve replacement and aneurysm repaired. I got the call from CC and they told me that they were recommending surgery. The surgical team wanted to do a David procedure which wasn't even mentioned as an option locally. I scheduled it and had it in August of 2019 in Cleveland. So glad I went with them! 

I believe the CT is more accurate than the echo/ultrasound from what I remember the Drs telling me. CC also used a formula to determine when they recommend surgery using aneurysm measurement/height/weight calculation i believe. 

 I still see my cardiologist there annually as well as my surgeon. I have an echo there every year but now CT scans are fewer and further between due to the radiation.

A lot of us have been in your shoes and are now on the other side of it. Feel free to reach out with any questions you might have. I don't give advice but i can share my experience and what worked out well for me!

Hi Herb!! Glad to see you are well buddy!

Thank you so much for your response and sharing your situation. I'm a little confused because I had an echo in 2017 and I asked my doctor said this aneurysm had showed and he said it would show a thoratic aneurysms but not an abdominal aneurysm. I am worried that this came on suddenly although there is some changes on an MRI in 2018. Is it a certain kind of echo or just a regular echocardiogram? My insurance does not cover Cleveland clinic so I am looking at a huge out-of-pocket expense, but I do feel like it's my heart, and I want to be in the most capable hands. I am so happy for you that it worked out and it sounds like you're doing excellent! That is helpful news!

Hi Mollie

I think that is what I did in 2019. My wife wanted me to get a second opinion from CC so she got in touch with them and they had us send every scan/test/medical record that we had. Then they have their surgical team review the case and assign a surgeon based on procedure needed, schedule, urgency, etc. 

I was told locally that I would need to just monitor every 6 months or so and eventually would need a valve replacement and aneurysm repaired. I got the call from CC and they told me that they were recommending surgery. The surgical team wanted to do a David procedure which wasn't even mentioned as an option locally. I scheduled it and had it in August of 2019 in Cleveland. So glad I went with them! 

I believe the CT is more accurate than the echo/ultrasound from what I remember the Drs telling me. CC also used a formula to determine when they recommend surgery using aneurysm measurement/height/weight calculation i believe. 

 I still see my cardiologist there annually as well as my surgeon. I have an echo there every year but now CT scans are fewer and further between due to the radiation.

A lot of us have been in your shoes and are now on the other side of it. Feel free to reach out with any questions you might have. I don't give advice but i can share my experience and what worked out well for me!

Hi Herb!! Glad to see you are well buddy!