A question for everyone.

[Guest guest]

How do you go about finding doctors who know something about this

condition, especially in terms of dealing with the chronic aspects? I'm

realizing that I need to find someone(s) knowledgeable, because the care

I'm getting simply assumes that it's a matter of recuperating from the

surgery and then going on your way. It's becoming obvious that isn't

the case, so how should I proceed? It's also important to me that the

doctor(s) take seriously my own views on things and recognize that I'm

the one dealing with the problems, not them, so I'm the one who has the

right to make decisions - that is, that I should be given as much

information as possible (at least, as far as I want it to go) and then

let me make the decisions on how to handle things.

I don't expect a doctor to know everything, and have no problem with

hearing, " I don't know, " as long as it doesn't stop with that. (I do

expect them to try to find out, if that's possible, or to let me know

if the answer is simply unknown.) I don't expect medicine to be able to

solve everything. What I want from a doctor is honesty, respect,

openness, and the recognition that I'm the one living with this, not the

doctor.

I don't think that I'm being unreasonable, and even if I am, this is the

way I want to deal with things. So, how do I find an appropriate

doctor, or team of doctors, to help me deal with TCS?

-- Heidi