Monday, October 25, 2010

I Don't Want To Think About It

Nelson's Syndrome. Aside from rest tissue it's BLAer's biggest worry.

For the first year post BLA Alex's ACTH levels stayed under 100. They are expected to be high due to the negative feedback, and 100 is a perfectly normal level for a BLAer (though not for a normal person). Over the past several months those numbers jumped into the 350-550 range. Alone those numbers are still acceptable, but her skin has started darkening as well. That makes two out of the three signs, so Friday she had an MRI to look for the third and final symptom. I don't know how soon we will hear back with results, but if the tumor is growing it will mean another pituitary surgery and possibly radiation as well. The daily headaches are back, so we are definitely concerned.