I called Jess' pain management doc Monday morning after faxing him a bunch of info. He wasn't convinced, but thought it sounded possible. He decided if the other docs were in agreement we could start therapy. Called neurology, she felt it was reasonable. We saw his ENT surgeon yesterday. I was expecting the dismissal from him, but he was supportive! I was shocked. He said it is reasonable based on the massive infection in his head. I was so careful not to tell him I thought maybe he had nicked the nerve during the 2 times he worked inside Jess' head! I brought AANS info, as well as a one page overview of Jesse's history to try to correlate his symptoms to TN. He was receptive! Pain management agreed to start a trial of carbamazepine. Here we go... Just need to get a blood draw and then he can start. Not sure about what dose he will start at and what his titration will be yet. Thank you all so much for the support. I am trying to stay in the moment and not get ahead of myself. I hate that it is probably TN, but I am so excited at the prospect of some relief for my son.
You go girl! Way to advocate for your son!
So glad he’ll be started on the carbamazepine ( tegretol) it’ll take some time to find the right dose. But pain relief can be found within 48 hrs sometimes. Be prepared that he might experience dopiness, dizziness and general heavy feeling the first few days, as the body adjusts these side effects tend to diminish. Ask the doctor for a plan on how to titrate up, should he need more pain coverage in the weeks ahead.
So pleased that people are listening, your son is blessed to have such a caring mother.
I really hope that the medication will help with the pain, he has been through so much and it must be exhausting dealing with all these health professionals.
Thanks so much for the update, I am so relieved for you all.
Don’t forget to take care of you, keeping my fingers crossed that Jess will get some relief.
Thanks Mimi. You are so helpful! We'll see how it goes.
HUGS back to you!
Mimi said:
You go girl! Way to advocate for your son! So glad he'll be started on the carbamazepine ( tegretol) it'll take some time to find the right dose. But pain relief can be found within 48 hrs sometimes. Be prepared that he might experience dopiness, dizziness and general heavy feeling the first few days, as the body adjusts these side effects tend to diminish. Ask the doctor for a plan on how to titrate up, should he need more pain coverage in the weeks ahead.
Thank you Trish. I have felt so helpless for so long. It hurts so much to see your child in so much pain. I am hopeful that maybe this will help.
Hugs back to you!
Trish said:
So pleased that people are listening, your son is blessed to have such a caring mother. I really hope that the medication will help with the pain, he has been through so much and it must be exhausting dealing with all these health professionals. Thanks so much for the update, I am so relieved for you all.
Don't forget to take care of you, keeping my fingers crossed that Jess will get some relief.