Hello!
So, my appointment with the "Head and Face Pain Specializing Neurologist", was today. I will be getting a "Trigeminal Protocol" MRI now. To my happy surprise, she actually knew what I was talking about, or what I knew I was talking about thanks to members, Vesper and Red.
She is the first Neurologist to actually get my diagnosis correct, and give me a hard copy of the paperwork stating it formally. Before now, my Pain Management Diagnosis was ATN and my Neurologic Diagnosis was ATFP. So glad we cleared that up!
Diagnosis: Atypical Trigeminal Neuralgia
Her spoken prognosis seemed to be, though, lifetime maintenance of medication. All she wants proceed with is to up my Neurontin a lot! (Whew! Glad I'm not dependent upon her for Pain Management. My kids would not have a Mom, but an agonized wreck in a fetal position, instead). Actually, Neurontin is the only med in my arsenal that I COULD have a pain free day without! I take it anyway. I told her that, since I'm raising kids, who need me to be functional, I had better just stick to what I know works, no time for years of experimentation (I know others are not offered any choice, and to say I am thankful and blessed that I am, even seems like an understatement).
I said, well, "something has to be causing it".
She replied, "Well, most of he time, they cannot tell what causes it. You know, we still don't know what causes M.S.". (But, they do. They don't know why, but it presents as "sclera" in the brain, thus the term, "multiple sclerosis". I mean, it doesn't quite qualify as an "invisible illness", like ATN, right? )
She said, "One can have a perfectly normal brain, and have Atypical Trigeminal Neuralgia. Sometimes we get lucky, and find a vessel looped, or something."
She agreed with me that why we probably see so many "Atypicals" in this support group is because "Typicals" can a lot of time, have MVD, Gamma Knife, or another procedure and go on with life, or at least have a period of remission.
Also, she kept on telling me that she knew my "Atypical TN' was not in my head. I kept reminding her that the diagnosis of "Atypical Facial Pain" meant it could be in one's head, but not "Atypical Trigeminal Neuralgia", and I knew it wasn't in my head, but in all over my face!
In order to defend her referring collegue, who diagnosed me with "Atypical Facial Pain", she kept saying, "No, they don't mean it's in your head."
"Well", I told her, "I've read otherwise in so many places, that it can be caused by "psychogenic causes".
She said,"Well, that is not what I've ever been taught it to be". (well, good!)
We had quite an interesting discussion about Atypical TN. I cannot tell it all here. Two hours of dialogue could get to be quite a snooze fest. Heck, maybe no one is reading this anyway, but in case they are, I will spare you the picky details.
She drew blood too, and advised I limited caffeine to 14 oz. a day, keep a pain diary, have a better sleep regimen, and most importantly, as I said, will be ordering that "Trigeminal Protocol MRI".
I sort of liked her, because she actually seemed to know as much as some of us do about "Atypical TN" as the people in the Atypical TN sub-group do!
Best to all to all of my friend here,
Stef
P.S. I will be leaving my medication to my Pain Management Specialist, and my clinical care to the Head and Face Pain Neurology Specialist, whom I spoke of meeting with above. Soooo happy and blessed that I have that choice.
