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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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Oh thank you SO much. Extremely helpful info!!
Sounds like there are many options for surgery recovery and you’re right… lots of people from far flung places are treated at Stanford, then return home, so Stanford is used to dealing with these problems. I needed that reassurance, thank you! And so very sorry to hear your mother in law had giant cell arteritis. I had never even heard of it before I was diagnosed. My sympathies to her and I hope she’s feeling much better!
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2 ReactionsSecond opinion for surgery: In your place, I would not. There is absolutely no reason to get a second opinion in my view. Stanford is very experienced and does a high volume. Experience translates to good patient outcomes; they know what they are doing.
The only question that I would ask the Stanford surgeon is whether, given your height, weight, body area (something that is calculated), you can and should wait until your aneurysm is 5.5 cm? (As I remember it was 5.2 cm?) An issue in that decision would be how fast is it growing, if at all, and whether it is possible to know. Is it stable?
My husband's aneurysm has been stable at 4.9 to 5.0 cm since January 2021 - that is when it was found -we first found out about it. During 2021, we had to return to Mayo, however, every three months until Mayo was certain it WAS stable. Then we returned twice a year; now once a year - and his surgeon said he could come every two or three years - but we will go every year.)
A CT angiogram is a more accurate measure than an echocardiogram. Have you had a CT angiogram? If yes, that would be the measurement to go by.
Much will be depend on the PET scan that has been ordered to determine whether you have any vasculitis (inflammation) of the aorta. If you do have inflammation, then you and your surgeon will want to make sure that is under control before having surgery.
Last, but not least, how do you feel about impending surgery? Do you want to just get it over with it so you can go on with your life? Or can you wait comfortably? Those are important questions to ask yourself.
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6 ReactionsAll such good thoughts and information, thank you again so much! I wish watchful waiting was an option for me, but both surgeons have emphasized that surgery should be done sooner than later. Of course, I never did directly ask surgeon #2 if we could wait and what would that look like for me in terms of frequency and mode of monitoring… Just as importantly, I haven’t really asked myself if I’m truly comfortable with waiting, as you suggest. My first reaction to that is “Oh yes! Let’s wait, yes!”
Because I am truly terrified of the surgery and recovery and how it will impact my life. But then this dark cloud would be hanging over my head and dogging my days as I lived with the uncertainty. I can never now “unknow” that I have an aneurysm… Ultimately I feel I must be brave and do the surgery, and it seems that absolutely I should choose to have it done at Stanford. Thanks for your advice about that!
I’ve had 2 CT scans here locally since January which showed my aneurysm to be 4.8cm and stable. However, Stanford reviewed those scans and remeasured images and said 5.2cm, plus they did echocardiogram which found same results “severely dilated”.
Also mild dilation of arch and root. I am crossing fingers that upcoming PET scan will not show aorta inflammation also.
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