Awhile back I decided to switch neurologists. I wasn't very pleased with the actual Dr, although the Physicians Assistant I saw was ok. Then the office staff really ticked me off, giving me a hard time about faxing a form over for me with a medical excuse for releasing me from jury duty. Anyway - called and set this appt for 2 months out. Eventually cancelled my follow-up at the other Drs. And today I got to see the new Dr. Hooray.
Last night I spent a few hours scouring over my planners and prescriptions writing down appt dates, and medications/dosages I've tried, names of all the Drs I've seen etc. I couldn't find or remember the name of the neurosurgeon I saw - but I think I got everything else. Handed this new neurologist, Dr Z, this 3 page chart I put together. haha. I'm really hoping that was helpful for her to see everything I've already done, tried, gone through, endured etc.
And so she did a full neurological exam, reflexes, balance, sensation, etc. And then she suggested switching to a different anticonvulsant. She said we have tried a lot of meds, but have by no means exhausted all of our options. Yeah. So I'm going from carbazepine (tegretol) to oxcarbazepine (trileptol) since I was hating the side effects on tegretol. Trileptol typically has less side effects AND doesn't require blood work to monitor liver function. Duh! She also prescribed a lidocaine ointment I can try (yes on my face) to try to numb out the pain a little when it gets bad. It's not always effective but worth a try.
She also said that my reflexes are a bit "brisk" (or overreactive) which can sometimes indicate a spinal cord compression, in my case in the cervical spine. The trigeminal nerve also goes through there in its path out of the brain (or something) so she recommended an MRI of my cervical spine (neck) to check that out. She also wants to do an MRA of the brain which shows the arteries and can show if there are any arteries pressing on or twisted around the trigeminal nerve (finally!!!!). And then, also she wanted to follow-up on that little tumor (schwannoma or meningioma) that showed up on the first MRI but on the other side of my head (so not causing my actual pain). She said these need to be monitored to make sure it hasn't changed or grown. And since it's been almost a year since my first MRI, she'd want to follow-up on that regardless. And it's not clear on the report whether a neuroradiologist or a regular radiologist looked at my MRI and wrote up the report, so this time she wants to be sure we have it done at a hospital where she knows there's a neuroradiologist to take a look at it. Good idea.
So, after waiting about 30 min while the nurse called hospital to schedule it for me, I have the 2 MRI's and MRA scheduled on Wed. It will take about 3 hrs total (with my nice friend Valium)! And then I go back to Dr Z in 2 months, giving the new meds a chance to start working (such a slow process).
And that's where we stand now! Not much has really changed . . . but hopefully a new start with someone who is making sure we are really not missing any pieces of the puzzle. Phew. I am really hoping we can figure things out ...