Yoo hoo! We are here! Don't forget about us and how we feel and how we are treated! Doctors are just starting to realize that the patient experience is part of the equation. Well maybe not just starting to realize this but more like acknowledging that how we are dealing with results and side effects are important too.
I will say doctors are human beings who are caring enough to enter the field of medicine and study for so many years to learn to heal people. But there is science involved in medicine where they are trained to read the pathology reports on cells and look for clear yes/no replied. Not, 'well, I felt pretty crappy after two days on that new medication so I stopped taking it'. Well how is 'pretty crappy' defined. Were you throwing up non stop or did you feel like you wanted to lie down for a bit?
I talk to my doctors and they suggest different things to me - procedures, surgery, prescriptions, etc. - at different times. My next upcoming discussion is with the ankle surgeon. I badly sprained my ankle in the summer of 2009. A little bone chip, a little tendon tear, and little cartilage chip (in a moment of stupidity I tried to look over my shoulder while walking - the danger of multi tasking). I have had x-rays and an MRI and tried PT, exercises, balancing, etc. I have been told if it is still problematic in December, I can have a 'cleaning out' surgery as opposed to a 'repairing' surgery.
My ankle is not better. I have been told it is 'chronic' (what a lovely word). I am really not looking forward to surgery (it would be my ninth - how many surgeries and then do you stop keeping count?) but my ankle is still not better. It is achy, etc. But if I had surgery, I know there would be a rehab period. Would it ever end up being better than it is now? How long will it take to stop being achy?
When you have a procedure/surgery/medical (mis)adventure, its not just the process of what happens when they do it but also, what are the long term effects. Will I have scar tissue that causes problems in moving my arm for the rest of my life? If you take out all those lymph nodes, will I have to worry about lymphedema for the rest of my life? What about underarm shaving?
For my next surgery, I want to know, not just what it will be like if I don't have it (I already know that part), but if I do have it, what are long term expectations, when will it feel better? Will it ever feel better than it does now? What about long term susceptibility to other injury with the surgery vs. without the surgery.
Some of my other surgeries have had more significant consequences if I didn't have them. When they say they are taking out the nasty cancer cells, you sort of shrug and say 'go right ahead' and don't worry about the long term results. I am sure they did give me a piece of paper before each surgery that had fine print to tell me about side effects. I have them somewhere... But maybe I should have paid a bit more attention to some of them.
I guess my point here is that we, as patients, need to educate ourselves on, not just the what happens if I don't have the procedure but what happens if I do. And then learn to speak up and tell our doctors about the problems afterward.
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