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 Debi, check your email! ;-)
Thank you, Herb!
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!
I think just a regular echocardiogram
Just wanted to give you a bit of insight to my story. I was diagnosed with TAA and Aortic Valve regurgitation in May of 2020 at our local hospital in Monterey. I was asymptomatic however the stress of the pandemic sent me to the ER thinking I was having a heart attack. I was 49. The TAA and Valve issue did not come as a total surprise as both of my brothers have had TAA / valve regurgitation and both have had open heart surgery, 1 at 47 and one at 35. The younger one also having an abdominal aortic dissection in his mid 20's. Luckily the ER dr took my family history serious enough to keep me overnight and run every test imaginable. My TAA was measured at a 4.7 at the time. The other cardiologists in the hospital did not take my measurement as serious and told me to be seen again in 5 years, Luckily a NP at the local heart institute referred me to Stanford and their Aortic Disease Dept. and within weeks I was seen there. Because of the tests ( Echo, MRI, CT) that were done at the ER, I was immediately scheduled for open heart surgery with valve replacement. This was because of our family medical history. And genetic testing was done where unfortunately no known gene was found yet for my family. At pre-op testing ( Echo, CT and angio) they found that my Ascending aortic aneurysm wasn't quite as bad yet. It measured at a 4.27 and the surgery was called off for now. YAY! I went back every 6 months at 1st, where a CT was still done. I guess to make sure nothing was missed. Last year I had an Echo and MRI, which the Echo is done of my Ascending Aorta/ Heart and Valves and the MRI is full from pelvis to my neck because of my brothers. Now I am on a schedule of Echo every year and MRI and Echo every 2 years as long as they can get a good pic of my aneurysm with just an Echo which isn't always the case with my dense ribcage. My last scan was in October 2022 where I measured at a 4.43 with my regurgitation holding steady. The way it was explained to me and everything I read and the webinars I follow on the John Ritter Foundation for Aortic Health is that each situation is very unique. Your family history is very important as well as your overall health and how quickly the aneurysm is progressing. In my case, with my brothers and we're pretty sure Uncle died of a rupture some years back, they will not let me got to a 5.0 measurement. However if my Valve should give me issues 1st then they will go in sooner and repair both. And even there, it can be very different as my younger brother has bio-valve now and my older brother, the surgeon was able to repair his valve without replacing it. I was lucky enough to be referred to Stanford and an amazing Cardiologist that watches me very closely and goes over a my scans with a fine toothed comb. And every medical procedure I do, I go over it with him 1st.
I have watched a few webinars from CC as well and it coincides with everything that I am hearing from my Cardiologist as Stanford, Mollie, I hope that gives you a bit of insight into my watch and wait situation. Let me know if you have any other questions for me...
By the way, the John Ritter Research Foundation would love to have more people with Aortic Aneurysm Disease to partake in their gene research if anyone is interested...
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