So if anyone with AMC has ever had to go to the ER for ANY reason, you know exactly what that means.
• You have what?
• Can you spell that?
• Hold on I’ll be back (while they go and look it up and realize there’s hardly any information out there).
• Then return, and say ‘so tell me more about the condition you were born with’.
Then, after all of that, you might get to actually talk about why you are really there. Which by this point the expressions of “really don’t know how to treat you’ or ‘I am really afraid to touch you or attempt to treat you’ is very evident. Only to be HALF treated, because they are too un-educated about AMC and are naturally afraid to do ANYTHING. Which I totally get.
They never truly listen to you about what your saying, about your own body, which they can’t even find research on, well enough to think outside the box of the text-book treatment. Suddenly you are ALL text-book treatment and not an individual person (you get treated less then someone without AMC) who requires totally different types of treatment or to simply be heard because even though they are not familiar with AMC AT ALL, you receive less then basic treatment because you are not the Dr. You only have lived with the condition your entire life, have done more internal research then anyone should ever have to do about their own bodies. Yet when you tell them what you need, you get treated with attitude because, god forbid, YOU actually know more about your own body then any medical book. Even better yet, get yes-ed to death and then get no consideration at all for what you just told them about what you needed and get still get the less than text-book treatment, then on your way.
It’s absolutely pathetic, aggravating and annoying as hell to have to deal with specialists who:
• Don’t listen because THEY are the Dr.
• Can’t see past the obvious and realize you actually are a person who knows your body better then they or any text book they have ever read does.
• Are not trying to be the ‘bossy’ patient by telling them what you need when you have to go to ER.
• Then only to get told things like ‘yes we will make it work for you so it works with your body’ only to receive nothing but the textbook treatments, if your lucky and sent on your way.
This has recently happened to me AGAIN and has always happened, every single time I have ever gone to ANY ER.
Aside from being in any sort of trouble or pain, getting passed ALL of that just to get to the main reason you are there is absolutely ridiculous.
Not sure what the answer is to all of that, or if any of the Drs/Nurses ever looked into AMC further after I left, but if you have a network of Ortho’s/Surgeons/PTs that DO know about this condition, I recommend you speak with them about whats going on. They are few and far between but they ARE out there.
Basically this was to inform those with AMC who have yet to go down the path of needing to go to ER. Those who have, may be able to relate, at least I hope so or I sound like a complete asshole, I can only speak from my own experiences. hahahaha