Should I get a second opinion about surgery?

Posted by pattiej @pattiej, Apr 29 4:56pm

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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@stevgood

I had the most fantastic diagnosis and care at Stanford for cerebral aneurysm surgery. Literally the best in the world. When I was diagnosed with a root and assending aorta aneurysm, I got a second opinion at Mayo PHX because I felt not the same urgency. Mayo ran a whole battery of tests in a week, then scheduled my surgery. It's July 8th. Take control of you own health. You are your best advocate. All of these Doctors are amazing, but it your life. Best of luck!

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Wow! The attention you received at Mayo PHX has been speedy and thorough! Impressive. You’ve received care from top notch places. That’s wonderful! And so encouraging to know that your experience with Stanford was excellent. Thanks for sharing that! Wishing you a very successful surgery on July 8th. Sending healing thoughts and positive vibes. You are very brave!!

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@christine5

You can get a 2nd opinion. Do it soon.
If your doctor says no watchful waiting, I would just do it.

I dissected, it's scary as hell

God bless

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Oh my goodness… I am SO sorry to hear that you experienced dissection. I can’t imagine. So incredibly scary. But you made it through, which is amazing. What a miracle.
Thanks for your encouragement for getting a second opinion and proceeding with surgery if recommended (I strongly suspect the surgeon will say I should do it)… although I can always hope for “watchful waiting”… but then, that scenario has its own set of anxieties!

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@mikeneverwired

Hi Pattie,
I agree with the comments. This is not a 'watch and wait' situatiuon. I had some heart rhythm issues and they did an echo and found an ascending aneurysm of 5.4cm. Like you say, they can measure this lots of ways and the numbers differ, but you are for sure in the 5cm range as was I. I had surgery 1.5 years ago and consider myself fully recovered. I can now bike, hike, run, and do most anything I wany physically. So I'd strongly recommend getting the surgery done. You will be frail for a couple months post surgery so make sure you have all your bases covered and have someone to support you those first few weeks. If you walk every day (that means every day)...with a goal of 10k+ steps/day, you will come out of this surgery stronger and more confident. ....make sure you get a surgeon who has done a lot of these surgeries... they are complex! So good luck!

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Yes, I do think this will probably not be a watch and wait situation… thank you for weighing in! So encouraging to know your surgery was successful and that you are back to an active lifestyle! I like to walk and hike, so continuing that is a huge goal for me. Good to know that walking daily is recommended post surgery!
My biggest worry is my age (almost 76) and how that will impact my surgery outcome and recovery. Well, I have a million questions and hopefully I will get most of them answered at my 2nd opinion appointment next week! Thanks so much for your good wishes!

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@pattiej

You’ve mentioned so many things that I’ve been thinking too! I’ve really wondered about the precision factor when it comes to measurement of the aneurysm. How can there be such a discrepancy in size when the same imaging is measured by different professionals? And especially when size is the defining criterion for surgical intervention, it seems to me that obtaining a very accurate measurement is crucial. I’ve read briefly about gated CT
scans. Seems like they’re hard to get? Maybe not widely available due to needing special equipment and expertise? Or maybe not covered by Medicare? In any case, no, I haven’t had one but it’s certainly a consideration. I’ll ask the cardiothoracic surgeon at my appointment on July 2. Thanks so much for your insight and thoughtful input!

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I have had gated cts and they are covered by Medicare. I have to pay a $200.00 co-pay whether it’s gated or not.. I would not feel comfortable not knowing the size of my aneurysm, mine is 4.9!
I bet you can find one!! Good luck!

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