I went to see a neurosurgeon several days ago. I did extensive research into neurologists/neurosurgeons and TN in the Seattle area. His name came up (there were only two covered by my insurance). I was impressed that he had received his medical degree from Georgetown University and is an assistant professor at the University of Washington School of Medicine.
When I made my appointment, I was very clear that I did not have Classic TN (Type I) but that one specialist had tentatively diagnosed me as TN Type II and another as TNP (Trigeminal Neuropathic Pain). Either way, it is clear that my 24/7 headaches began immediately after my sinus surgery this past February.
I rounded up all my medical records, 3 CT scans, brain MRI, sinus x-ray, lumbar puncture, 4 sets of blood work, dental x-rays, the results of stool and urine testing that ruled out everything (the infectious disease specialist exams ensured there was nothing “hidden” in my auto immune system). I sent my neurologist notes, PCP notes, and notes from all the other specialists including my sinus surgery in Feb 2011 and again in Apr 2011.
I was very excited that I would be meeting with an expert to formally diagnose me. The nurse took a long time examining me, asking me questions, etc. I had also completed an online diagnostic questionnaire from Oregon Health & Sciences University that showed a tentative diagnosis of TNP. I completed 10 pages of pre-appointment paperwork, and the neurosurgeon had almost a week to study most everything.
Anyway, after the nurse left, after a very long wait, in walks the neurosurgeon, his nurse, a student of his, and a visiting doctor from China. Introductions were made and I thought, wow, this is like an episode of House!!! The neurosurgeon sits down, does no examination, and simply asked me, “Why are you here?” Okay… so I tell him.
He tells me I don’t have a “good enough story.” He acted like he only knew about Classic TN. I kept referring to it as TN Type I. I brought up TN Type II. I told him I have bilateral pain that moves around my face (from forehead into my upper teeth). He states with absolute certainty that no type of TN is bilateral. I begged to differ. Then I brought up TNP. He looked at me like I was crazy and like he had never heard the term before. I explained it to him (he must have really looked foolish – he IS a neurosurgeon and certainly I would expect a neurosurgeon would understand more about the trigeminal nerve). Nevertheless, I had done extensive “homework” and could talk intelligently (thanks in part to LwTN.org) about TN Type II and TNP and he could not.
I asked him what I had. His first response was “That is outside my area of expertise.” Well, I was not going to accept that kind of response. I knew that I would NOT leave until he recognized that I had bilateral trigeminal nerve pain. He finally agreed that, yes, I had (and these are his exact words) “bilateral trigeminal something.”
He then referred me to a pain specialist. Uh, no thanks. I am on Effexor for the depression (that only developed after months of being in pain) and Xanax to help me sleep. I have chosen at this time to not take any pain or anti seizure meds to help my brain clear up from when I was on Topamax (May-June) and Gabapentin (July through mid September) when my PCP took me off it (neither one ever worked, but that was the best the neurologist could do for me).
So, I went in search of where I found the diagnostic test (I gave the neurosurgeon my only copy), and found that it came from Oregon Health & Sciences University. I figured if they could write an online diagnostic tool, then certainly they should be able to help me. I called them a couple of days ago for an appointment and found out my PCP would need to fax a referral and my medical records to them. They would take 1-2 weeks to determine if they would accept me as a patient, and then I would be seen (or not, depending on their determination).
My PCP faxed over the referral and my medical records today. I am very hopeful I will get the diagnosis I need from OHSU. They are in Portland, which is about a 3 hour drive each way but well worth it in my eyes! I will keep everyone posted.
As many of you have mentioned long before I joined this board, we sometimes have to educate our providers. I just never thought I would have to educate a neurosurgeon who is also an assistant professor. Pity not just his students, but ultimately those students’ patients because they will be as ignorant as he is regarding the different types of TN.
I also want to say a huge thanks to you, Red, for the tireless work you do for all of us to educate us, inspire us, and teach us how to not take any crap from a doctor! :-)