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Should I get a second opinion about surgery?
Hi all, my name is Pattie. I was diagnosed Oct 2024 with giant cell arteritis which led to a CT scan. It was discovered that I have an ascending aortic aneurysm, 4.8cm to 5.3cm (depending on who's measuring). I just finished prednisone treatment for the GCA, supposedly it's in remission now. I was referred to cardiovascular thoracic surgeon for the aneurysm. She recommended open heart surgery to repair it with a graft. My valve is normal tricuspid. She's "calling" the aneurysm size 5.0, as she is "taking an average" between the measurements of 4.8-5.3 (obtained by 2 radiologists and an interventional cardiologist). Not clear if she actually measured it on imaging herself. She said my surgery should be "sooner rather than later" but that it's not "emergent", although she doesn't recommend a period of "watchful waiting". She's been pretty vague on the timing. Her rationale for surgery: She says 5.0 meets threshold for surgery, and that the "integrity of my vascular tissue may be compromised" due to GCA, and also family history... my father died at 63 from sudden cardiac death (unknown if caused by aneurysm, although he had hypertension and atherosclerosis). I also have hypertension (now controlled with BP meds).
I am 75 years old, 5'9" tall, very slim. I've read about aneurysm size (and also a person's height/body surface area) and such conflicting information about when it's appropriate to intervene surgically, including reports from people in this forum who have lived with their aneurysms that have been stable at larger sizes for years etc.
Getting very anxious about who to believe/trust. I am terrified at the thought of open heart surgery and the extensive recovery period. The hospital here is nice, the surgeon seems nice, but she said the hospital only does 10-12 aorta surgeries a year. I've done extensive research and reading. Wondering if I should seek out a second opinion from a reputable, high volume heart center. I'm in California... Stanford, UCSF, Cedars Sinai in LA all have second opinion services available online (you get a written report), but it's expensive of course. I suspect I'm probably going to get the same recommendation from other professionals, telling me to proceed with surgery. Does anyone want to weigh in on whether they think it's worth the hassle and expense for me to get a second opinion?
I'm just a bundle of nerves and so undecided about everything. Thanks in advance for any advice that's offered!
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I agree with the other responders who say that given your aneurysm size and other medical issues, you should get a referral to, rather than just a second opinion from, a high volume aortic center. I'm in CA as well...we're lucky that we have several very good high volume aortic centers...with this type of surgery, it's especially important to have your surgery done by a surgeon who specializes/does many of these surgeries, on a regular basis. Are you in Southern or Northern CA? I'm in the Bay Area, and while my aneurysm is still small--around 4cm...I've scheduled an appointment with Stanford's Aortic Disease clinic. They're planning to do genetic testing, and I'll see a cardiologist with a specialization in aortic issues. Due to my dialation still being on the smaller size, I am not scheduled with the cardiothoracic surgeon yet...but I've heard from several people that at Stanford, Dr. Fischbein is excellent. I chose Stanford over UCSF because when I did a bit of research it looked to me like Stanford's results for thoracic aortic aneurysms were a bit better than UCSF's were...though I think UCSF has a good program as well.
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2 ReactionsYes! The local hospital and cardiologists couldn't find anything and even if they had, they weren't a good enough facility to even worth considering. I was at Mayo on Jul 22 and had a CT with contrast, called in for an angiogram with possible intervention on Aug 6th and an additional catheter procedure was done to collect data because not only was what they knew about too extensive, the found something else. I met with the head of cardiovascular surgery on Aug 12th, had a pulmonary catheter procedure on Sep 4th and open heart surgery on Sep 10th the last over 14 hours. Mayo Clinic Jacksonville was the only hospital in Florida that could have done the 4 major procedures that had to be done that day. Shands or Tampa General could have done 1 or 2 at a time. But it wasn't just that I was at Mayo in Jacksonville, it was the surgeon I had. He has done over 3000 open heart surgeries including heart transplants.
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2 ReactionsWho did your surgery at Mayo, Florida?
Dr Picardi
Dr. Jack Haney
Great information! Thank you so much. I live in Northern CA (Monterey) so Stanford would be very accessible for me. I googled their Center for Aortic Disease today, reviewed Dr Fischbein too. Very impressive. It would be awesome to talk to a doctor who specializes in aortic aneurysm. Although I suspect surgery will be recommended, rather than waiting and monitoring, it would be of great value just to have a different doctor's perspective. I'm thinking of doing the online 2nd opinion option but may try for an in-person appointment, although I worry that it could be a long wait! In any case, sure appreciate the tips. Gives me courage to take action steps!
Incredible journey. I can't believe how fast it all moved for you. So fortunate that you were able to find such an experienced surgeon! I hope that you are fully recovered and doing well!! Thanks for sharing your story. Gives me hope and courage.