Finding a Surgeon

Posted by bitsygirl @bitsygirl, Sep 10 10:42am

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?

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

pamela78 | @pamela78 | Sep 12 9:04am

In reply to @okred "I’m 4.6 and feel similarly to you. Diagnosis only a few weeks ago and I’ trying..." + (show)

I'm having a genetic test in November to see if this is hereditary in my family. My kids are 47 and 54 and I want them to know. A new diagnosis is truly shocking. It took me a couple of months to wrap my mind around mine--a couple of months ago--so I hope eventually you'll be able to settle down and think realistically about your life and plans. Best wishes to you.

pamela78 | @pamela78 | Sep 12 9:07am

In reply to @bitsygirl "@jefftalley - I never thought about that. For some reason, I thought I'd never be able..." + (show)

It can't hurt to ask. I believe patients need to be assertive (not aggressive) in asking questions and becoming fully informed. It seems many doctors give the minimum amount of information but will go deeper if you ask them to.

cassava | @cassava | Sep 19 9:25pm

In reply to @pamela78 "It can't hurt to ask. I believe patients need to be assertive (not aggressive) in asking..." + (show)

It is so important to keep on top of your health and that of your family. I know from bitter experience. I have always questioned my doctor and researched any answer(s) he gave me. Often the answers he gave me were wrong or incomplete.
My beloved husband didn't. He always said the doctor knows best! He just said you are not a doctor! Quite right but GP's are overworked and sometimes overlook important pointers.
It mad me both angry and sad that a diagnosed condition by him (leaking heart valve) has progressed to an enlarged heart and damaged kidneys and liver. His prognosis is poor.
Anyone should do their OWN research and if unsure "pester" their doctor.

pamela78 | @pamela78 | Sep 20 6:55am

In reply to @cassava "It is so important to keep on top of your health and that of your family...." + (show)

You are so right. It's only been little things, but I have caught things my doctors missed or forgot. They're not perfect any more than we are. You have to interact with your doctors, not just sit passively like a child. I think men (no offense) often find it hard to deal with doctors. They need encouragement, perhaps coercion, to be more proactive. Also, you might consider going with your husband to his appointments, and by that I mean, go right in with him, don't just wait in the waiting room. I've always been a docile introvert but as a teacher I had to learn to be assertive. It can be done. Good luck and hang in there. I know this is a lot to deal with.

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