Should I get a second opinion about surgery?

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!!

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!

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!

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!

Ta da! Update on my 2nd opinion at Stanford heart clinic on July 2... yes, I actually got myself up to Stanford and DID this... thanks to encouragement from kind folks in this group! It's about a 2 hr drive, not too far really, but I'm a homebody so it was a major effort.

First, I had an echocardiogram and then the next day I met with the cardiothoracic surgeon/aorta specialist, Dr Fischbein. Echo showed my aneurysm "measures 5.2cm extending to arch which measures 4.3 @ proximal portion. Aortic root is borderline and measures 4cm." Dr Fischbein is recommending "ascending and Zone 2 total arch replacement to remove all aneurysmal tissue". He stated, "I recommend a Zone 2 arch since the bovine trunk is so large". (Apparently the structure of my arch is a variant from the norm). During actual surgery, he will decide whether or not to replace aortic root with "bioroot". He is also recommending a PET scan prior to surgery to make sure there is no inflammation in the aorta (due to my diagnosis of giant cell arteritis which has been recently treated with course of prednisone). He said stitching the aorta graft into inflamed tissue could increase my risk of infection.

Whew! It was alot to process and I felt a bit dazed and overwhelmed in the moment (still do). I liked the surgeon though, and I felt comfortable with him. But it wasn't until days later, that I realized how much I don't understand. His recommendation is very different from the recommendation I got from my local cardiothoracic surgeon who discussed doing a "straightforward" surgery, just cutting out the aneurysm and replacing it with graft. She never mentioned the arch or root, although she did mention they were both "mildly dilated". It seems Dr Fischbein's recommendation is for more extensive and complex surgery including arch and root.

My big, obvious question is, which surgeon do I choose?
I don't feel at all mentally equipped to make this huge decision. I've read that better patient outcomes are associated with higher volume hospitals and I'm certainly trusting Dr Fischbein's opinion about my needing the more complex surgery. However, getting surgery at my local hospital is vastly more convenient and especially comforting if I should have post-surgery complications, and also for getting support from friends (I have no family). I'm 75 yrs old, live alone. Logistics of surgery and arranging for support during recovery seems daunting enough, let alone managing all of it while being away from home.

Anyone care to weigh in on how I can calmly and logically make this decision? Ha! Or perhaps bury my head in the sand and postpone surgery indefinitely? (my knee jerk choice)

You certainly have a lot on your plate. Did you discuss what the first surgeon recommended with Dr. Fischbein? I wonder if it would be possible for them to discuss your case together and come to a conclusion? I know these surgeons usually work in teams. It's hard to know what to do when you're facing such a difficult decision and have no idea yourself what's best. My gut feeling would be to investigate Stanford further. What's the hospital like? Is it clean and pleasant? (I know hospitals are clean but is it really clean?) Does the staff look happy or harassed? Is there a rehab facility nearby where you could go to recover and have nursing care? Do you have a friend who might go with you and/or stay for a few days? I live in NC and my best friend has offered to go with me to Cleveland Clinic or Mayo or wherever. Or I may just stay in NC, if I ever need surgery. You won't want many, if any, visitors, at least at first, I imagine. I think you'll feel better once you make a plan, feel good about it, get all your ducks in a row, then trust the gods or fate or karma or the good will of the universe. This group, as you say, is a life-saver.

Thank you for your thoughtful comments and insights. It didn’t occur to me to tell the 2nd opinion doctor about my local surgeon’s recommendations! The idea of them consulting together about my case is certainly a consideration.
I’m inclined to pursue having the surgery done at Stanford hospital… great idea to check it out on all those parameters… staff vibes, cleanliness etc. Also, you’re right, as for friends support, I probably won’t want too many visitors while I’m recovering! I will definitely inquire about rehab facility in the area. I can’t imagine going directly home to my apartment after discharge from the hospital… I know I will need a lot of help.

I would choose Dr Fishbein at Stanford. He appears to be conversant with all possible issues. Going local could be a disaster - we have had a patient advocacy business for 35 years and have done site visits at all these major hospitals. From a systems viewpoint, most community hospitals cannot compare to these major academic hospitals.
You should speak with the social work dept at Stanford. They can provide you with information about the post op protocol and process. I suspect you would be referred to a skilled rehab facility for at least six weeks.
In our previous experience with other services (primarily transplant patients at Stanford) Stanford had “tentacles” to resources outside the Palo Alto area. Patients are referred to them from all over California, the US and even Internationally.
Write down your needs and your questions and present them to a social worker. I suspect Stanford Cardiovascular surgery also has Patient Navigators who could be helpful about the operative process, etc..
The giant cell arteritis is a risk factor for rupture. What is the status of your GCA?

Such excellent feedback, thanks so much. I just checked Stanford Hospital website and they do have patient navigators and social workers. I will look into this. Also, since I don’t really have a strong “anchor” person to see me through this whole thing, enlisting a patient advocate seems like it will be essential. It’s all very overwhelming, especially if I choose Stanford and will be in the city and away from my home. It does seem like Stanford is the obvious choice, however. Your point about the differences between a smaller community hospital and a large academic hospital is right on.

As for my giant cell arteritis status, supposedly it’s “calmed down” now following a recent 3 month course of prednisone, according to my rheumatologist. However, this was not standard course of treatment, usually it’s much longer and with higher doses for GCA, but I gratefully accepted this shorter course and trusted my rheumatologist. It’s frustrating though because he can’t say for sure that there’s no more inflammation. My inflammatory markers were in normal range in April, my headache has gone away, but I still have fatigue.
Dr Fischbein (Stanford surgeon) has ordered full body PET scan prior to surgery to rule out “aortitus” (never have heard that term before!).

You mentioned possibility of 6 weeks at a rehab facility.. yikes. Do you know if it’s customary for an out of town patient be transferred to a rehab facility nearest the hospital where surgery was done? Or do patients get sent back to their home towns for post-op care?
Thanks again for all your valuable info.

I thought that possibly Six weeks in a rehab facility might be a welcome option since you said you don’t have family support. Certainly going home is another option if you have competent medical providers at home to follow you. That may or may not be the case in a smaller community: Sometimes you can find fantastic competent providers and other times you won’t.
There is also the issue of provider willingness to care for patients “done elsewhere.”
However, if you live that close to Stanford, Stanford probably has a “stable” of people they routinely work with. You won’t be the first patient in this situation - CV surgery done at Stanford with outpatient follow up care at home. Some commercial insurers demand it!
My mother in law had giant cell arteritis. She hated prednisone cause it made her so nervous. She was switched to methotrexate but her liver could not deal with methotrexate cause of an alcohol problem when she was younger - she had damage.
My husband’s fantastic rheumatologist ordered a PET scan on him because of his aches and pains, the family history, etc.. The PET scan fortunately showed no vasculitis.
Hopefully, that will be the case with you also but be prepared for a more intensive prednisone or other regimen before surgery. You will not want to have surgery on an inflamed aorta.
You might want to see a rheumatologist at Stanford.
Best wishes. I hope that Inhave been helpful. There is a lot of help and resources available. Social workers and navigators should be able to help you access them. Also there are funds to help with financial needs. Ask about those also.