Nita, [and over-the-shoulder, Emmy]
In your original profile, you described your medical history in these terms:
I don't know where to start, I got diagnosed with TN, put on Gabapentin, but it made me ill. Put on Carbamezapine, Its been ok till the last few months where now its getting so bad dont know where to put my head. My Doc last week gave me Nerve blocks but they only work for about 4 hours, tried to up my Carbamezapine, but he decided to change it to Tegretol... But he lowered the dose. Then when i rang up in agony. That's when he gave me the nerve block.
He has said i need an MRI, put me back on my carbamezapine again and sent me home. Where do i go from here. My MRI isnt until 5th June. The Pain i have is like electric shocks ,on the right side of my face, above and below my lips and all up the side of my nose if that is any help ...
FYI: Your reported symptoms seem to line up pretty well with those reported by other patients diagnosed with Typical Trigeminal Neuralgia.
FYI: Tegretol is a brand name for Carbamazepine. I'm a little surprised that your reactions to these two forms of the same drug were so noticeably different. Was there a reason your doctor gave for reducing your dose rate when he put you on the brand name of the drug?
Y0u've also asked for help in setting up questions for the neurosurgeon. I would offer these:
1. How long have you been in neurosurgical practice, and where were you trained?
2. How often do you perform MVD surgery?
[note: once per month is not a very deep experience curve. I'd be more comfortable with a surgeon that does two or three operations per WEEK].
3. What rate of initial success in total relief of pain have your patients like me -- with Typical TN -- had from MVD? What additional fraction of patients get relief while continuing medication?
4. What rate of significant side effects such as facial numbness or Anesthesia Dolorousa have your patients had? Have any of your patients lost hearing or the tearing reflex of the eye?
5. How many years should I expect relief from pain to last -- and how do you know?
6. Do you track long term outcomes by periodically surveying your MVD patients? If not, then how do you know your success rates?
7. If I have pain recurrence, what are the statistics on successful re-operation by MVD?
If your doctor voices any concerns about your age or other health factors as disqualifications for MVD surgery, you might ask him as nicely as you can, whether there are studies published in medical literature, that would justify denying you the most effective surgical treatment for this disorder.
These ought to get you started. I likewise suggest a reading of the "Help with Research" tab on any of the pages here on the site. Apart from the fact that I wrote most of it, there's a lot of information there that you may find useful in your discussions with specialists.
Do let us know how this consultation comes out.
Go in Peace and Power