Thanks so much for replying, and for the opportunity to talk with you! I am encouraged by your AVN's "inactivity." I believe from the things I've read, none of the doctors have classified it yet, but that she's probably in Stage 2. The xrays are showing some slight flattening of the rounded areas of the bones, and her knees grind and click something aweful when she stands and sits. Right now, the AVN in her right elbow is causing the most trouble. She's taking Tramadol for the pain since narcotics are too strong; she needs to be able to get through her classes, and she can't take NSAID's. What types of pain relievers have helped you that don't cause too many side affects, but still relieve the pain. As her Mom, what really tears me up is the idea that she'll suffer so much pain from this.
Hmmm, the Remicade use possibly coinciding with the inactivity is something I'll discuss with her doctor. So, how much time has passed since you had the Remicade and what made the GI doc believe that the pain was coming from elsewhere if you were having to use cane etc to walk with? Have you heard of anyone with AVN using stem cells from their own body for treatment?
On an encouraging note, I did find a specialist who wants us to get additional MRI's and Xrays of her shoulders and hips and to send a package of all of the images and her medical history to him for review. Unfortunately we live in the south and he's in the northeast coast...but I'm willing to climb mountains for her if necessary...just wish he were closer.
I have read, read, read and can almost quote word for word what the recommended procedures are for this. This doctor that I found uses joint preservation techniques rather than waiting for the bone to collapse and I feel like she'll be in good hands as this is a very reputable doctor with impeccable credentials...I'm encouraged by that. Of course, I wish like mad that this weren't happening to her, but it is and I will do whatever it takes to try to set her up for the best possible outcome.
I do appreciate your kind words and for just being there to talk to. Thanks again!
Post Edited (Ides) : 10/22/2012 5:58:18 PM (GMT-6)