Ok, So here we go again. We leave for California in just a little under 48 hours, Going back to see the famous Dr. Linskey for Abbie's one year follow up. I wish I could say we are headed there with her Pain Free, but we are not. Abigail as of May 2014 has had 3 MVD surgeries with no success.
Abigail still suffers with TN pain pretty much on a daily bases. Abigail has found several ways of dealing with her pain. She has also learned to keep a journal of her pain and when her journal isn't around she has started to log it in her smart phone until she can get home from school and log it into her log.
Abigail has seemed to develop a new pain in the back of her head, it started out just on the left side but now has moved to the right side also. Abbie also wakes up most mornings with a sever headache. Since October we have seen several doctors her in our area with no luck of any new good information, but many suggestions.
We seen her Neurologist 2 months ago, I was told by him, "it's like you want your daughter to be in pain".... I could not believe what I was hearing, and My poor Abbie was just devastated, to know he doesn't believe her that she is in pain. Never a less she and I both walked out of his office in tears. Then we see the pain management doctor the Neurologist referred us to see. I'm going to follow his lead and see where it takes us, Very nice many as everybody has been. But wants Abbie to see a psychologist, So they can help Abbie understand her pain ... ???? and thinks Abigail is suffering from PTSD...??? .... I still don't understand. I went to school and asked her teachers, nurse and guidance if they seen any signs of Abbie having PTSD. They all thought I was joking.
What am I hoping to get out of this visit... Some answers to why Abbie hasn't responded to the decompression of both the left and right trigeminal nerve.? What else could be causing her to get worse, than getting better..? And what tests can be done while we are there, even if it requires us to stay out there for a longer period of time.... And if there is a collage of his that would see us, and give us some possible answers that we aren't getting here at home.
We will see Dr. Linskey at 9:30am Wednesday March 18th. Wish us luck.