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Finding a Surgeon
I have an ascending AA somewhere around 4.7cm. So I have some time before I might need surgery. For me, one of the causes of stress around this diagnosis is where I'd have it repaired. I live in a rural area and the only hospital that might perform the surgery doesn't do many. Everything I've read indicates that it's important to go somewhere that performs a lot of these.
I've been able to get an appointment at Mayo Rochester a couple of other times, but I've also been denied a visit (for the aneurysm at 4.5cm). I don't think it's a given that any hospital would perform the surgery.
So I am interested to hear how other people have handled this. Does one contact the hospital you'd like to have it repaired at in advance? How far in advance? Has anyone that meets the standard surgery criteria been denied a request for repair at a particular center? Maybe it's a non-issue and I'm worrying for nothing?
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In my case I chose a surgeon, the hospital came as default (where he practiced). I set up an appointment with his office directly, I picked one who was reported to be one of the two best ones in Houston where I live, he did not disappoint, not only was he incredibly experienced but an incredible person, spent all the time i needed to ask questions, etc., he gave me all the information, pros and cons (very few in my case), and the advice i needed. I had my surgery 3 months later, and it went as easy as it could have gone. In my mind the choice of surgeon is more important than the hospital itself.
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3 ReactionsHi. How did you get diagnosed? Whomever ordered your CT, if it wasn't your cardiologist, would refer you to a cardiologist.
If this was the first CT then they will likely do another one in like 10-12 months to compare and access. It could be a couple years (fingers crossed) before you need repair. At that point they will recommend a good heart hospital/surgeon and refer you to them. Hopefully you won't need one for awhile!
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1 ReactionI concur with all the above. My cardiologist recommended a surgeon and the hospital was a default location where the surgeon worked. Good luck.
65 year old male here, 4.8cm thoracic aneurysm. I live in central Florida and, like you, wanted to get my ducks in a row regarding a potential surgery. I was able to get in with a Mayo Jacksonville cardiologist, and he is my portal into the Mayo system for a surgeon should I need one in the future. I have already been able to get referred to a Mayo electrophysiologist for an ablation to address afib. Your insurance company directory might identify doctors who are accepting new patients at the facility you want. Start seeing him/her for a related or unrelated condition and you may be eligible for an internal referral.
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2 ReactionsThanks to everyone for sharing their experience. It's very helpful!
@wayne3382 - Mine was found on a CAC test. The diagnosis was a year ago but it seems to be growing. I'm on a 6 month check schedule now.
My PA ordered the CAC and she referred me to a cardiovascular surgeon at a regional center a couple of hours away. That center covers a large geographic area, but the area it is not population dense. They have a good rating in more common/routine cardiac surgeries, but not this kind of problem. You're right, though. I guess when the time comes, I can just tell him that I want to go to a center that does a higher volume and hopefully he will help me??
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2 ReactionsHi Bitsygirl. This is no fun- I’m a newly Diagnosed 4.4 ascending. Ugh!!!!!! I’ve no expertise at all but my feeling is that if this thing ever does a Mt Vesuvius 🌋 odds of survival are extremely remote / low thru a lack of time and accessibility etc etc. Sounds morbid 😓 but I’m being realistic and aware of the worst case scenario. Therefore prior to the situation becoming worse (for your peace of mind) it would be ideal to have done all things possible to line up the best surgeon / hospital who has / have done very many repair ops of this nature. If possible I personally would be loath to solely rely on faith and hoping a last minute optimal solution will materialise. That sounds too chancy for me.
very best of luck and love to you during this trying life episode ☺️
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2 Reactions@jefftalley - I never thought about that. For some reason, I thought I'd never be able to become a regular patient of a cardiologist at Rochester (the closest major hospital). I'll look into it. I got a 98th percentile CAC score along with my aneurysm diagnosis. I'd be thrilled to have a Mayo doctor monitoring the problems.
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1 ReactionI would have him recommend a cardiologist and get set up with them. They will manage your situation and they are more specialized and usually more connected.
As far as that hospital goes, they may not even take you. Can't get more major than aortic aneurism and you'll need a thoracic surgeon that's well respected.
If/when you need the surgery you'll be able to decide then. Best wishes. W
I’m 4.6 and feel similarly to you. Diagnosis only a few weeks ago and I’ trying to be realistic. So hard. I also learned yesterday from my mother that I have a family history of this. Welllll, that would have been nice to know!
I’m 4.6 and newly diagnosed. I appreciate your post because you’ve captured my thoughts/fears perfectly!