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Pooka1
06-12-2010, 10:45 AM
I have been thinking about the two threads about complication rates and how to use that information and the universe of information that is not readily in hand and etc. etc..

I am coming to think there is very little in common between a consult about an adult AIS case and that for a kid. If you made it to adulthood then there is likely always going to be some level of electiveness about your case. Some folks, though, due to pain or extreme progression, will have less apparent choice at least. But for the bulk of adult AIS cases, I think surgeons mince around a bit correctly because they have to balance the complications with the fact that the person is actually still alive and came to their office.

This mincing is appropriate because it is a true balancing act for many adult patients it seems.

At the other end of the spectrum, I have dealt with two surgeons with my kids. There was ZERO mincing around on the part of either one. The cases were such that I was not presented with anything I recognized as a choice though that could be my perception. Frankly, you don't have to be a surgeon to see where this was going definitely in the one case and almost certainly in the other. I am forever grateful to both surgeons for not mincing around. Now of course their knowledge base is always going to be imperfect but they balanced the risks and uncertainties with the likely outcome for two teenagers near the end of their growth.

Quality of life matters critically to a teenager (and to everyone except monks I guess). You only go around once. This operation not only probably saved their lives and health but allowed them to have a childhood. We traded a certain bad present and certain bad future for a quasi-normal present and uncertain but hopeful future. That's a no-brainer for me. Life is a crapshoot and we make the best decisions we can at any moment. And life is fundamentally and intrinsically unfair. Accepting that and making the best of it is all we can do.

lray
06-12-2010, 03:50 PM
Life is a crapshoot and we make the best decisions we can at any moment. And life is fundamentally and intrinsically unfair. Accepting that and making the best of it is all we can do.

Absolutely agree!

Thank you, Sharon.

twinsmom
06-13-2010, 10:33 AM
My husband and I have gone around and around in our heads the multiple could have's in our daughters' cases. They needed it. We have spend time with my mother in the medical care system and have gained a new perspective on our own situation and experience. Except for the rangling between departments our treatment was much more positive. I almost wanted the departments in my mother's case to wrangle because at least I knew there was passion involved. Sometimes you can get so obcessed with your own medical soap opera you lose the ability to see it as it is related to other scenarios. Our story still isn't great. My daughter has a visit this week to probably do some planning for the next event. I am working with her school to plan for next year. She will need a IEP because of the med port.
Mom is in hospice now - all of a sudden. The next several months will be at best challenging at worse really really hard.

rohrer01
06-13-2010, 08:09 PM
Very well said, Sharon. I posted my thread here because it is for adults. The docs have always wrangled around with me. It's quite frustrating. When I was 16 they were prepared to operate and even explained a few things to me. I'm not quite sure what made them change their minds. My mom says it was me. I'm sure there are things that I don't remember. That's why kids have parents. Parent's are ultimately responsible for making these decisions, and there is a place for them on this forum. Since I didn't have the surgery back then, I am left to wrangle. It's a very HARD decision. I have one doctor that probably gets a salary telling me no and one who runs his own clinic (so get's paid directly from the # of surgeries he does) telling me yes. Is one of the two opinions financially motivated? I just don't know. I'm really afraid of a bad outcome, but desperately want pain relief. I'm sure there are others out there in my shoes.