Trigeminal Neuropathy

[bridgie]

Has anyone been give the diagnosis: Trigeminal neuropathy? (not the same as trigeminal neuragia) http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/types.html#pttn

This is one of my pain problem diagnosis. I used to say I had "scar neuroma." (An earlier pain management docs diagnosis.) I've begun seeing a really good headache neurologist. He's yet to really get started managing me. I'd mentioned my goal to someday get a BAHA hearing implant but was not confident to do so figuring the implant would increase pain coming from the old surgical site where the BAHA would be placed. Most physicians I've seen and discussed my concerns readily agreed with me. After the huge cascade of complications post surgery no one wants to touch me with a ten foot pole!  This headache doctor is more confident in his abilities to help me with my pain problems. He suggested that if I really want to have the implant to go get it done and than he'd treat me for whatever pain level or type I had. He says treating me first for the head pain and than sending me off for the implant would be less prudent. He'd have to start over. So once I have the implant (scheduled late June) he'll hospitalize me and get me off my current meds and onto other meds etc. If all goes well, it will be a real miracle in my life.

My headache doctor: http://www.ucsf.edu/science-cafe/conversations/hope-for-headaches-a-conversation-with-headache-expert-peter-goadsby/

[MAlegant]

Yup, I've got that.  It's no fun at all.
Marci

[GeorgiaMei]

Hi bridgie:  I also saw Dr. Goadsby at UCSF.   Is his treatment plan post-BAHA a clinical trial, or an FDA-approved therapy?  I assume you will be hospitalized to d/c your current meds.  Do you know what your plan will be after that?   I have severe chronic daily headaches and switched over to the Standfor Pain Clinic, b/c I thought it was a better fit for me, but I would love to hear what your experience is w/ Dr. Goadsby.  It's nice having another postie in the Bay Area neighborhood!  Good Luck to you...I hope you feel better soon.  Karen

[Janet]

The term trigeminal neuropathy is a broad category. Did your doctor say what he thinks is causing it? Here is a comprehensive link to a paper on trigeminal neuropathy that lists nurerous causes. 

http://www.rma.gov.au/SOP/09/030.pdf

[bridgie]

Thanks for the posts and good wishes. I've been away due to work and household company. Today I was reminded I'm still human and came down with an awful headache. Better now.

Anyway, Karen HI!!!! I'd love to talk w/you. Interestingly, I'd been going to the Stanford PC before I switched to Goadsby! Dr Goadsby has a special medication he uses for inpateint headache management during the hospitialization. Its not about detox. Its about stopping the pain cycle. I'm on the schedule next week for the BAHA. UCSF has not returned my calls to let me know what my co-pay will approximately be. I may have to postpone the surgery due to financial constraints. I've got a huge deductable and a large out-of pocket and co-pay. Just when my ducks were in a row this economy tanked. I'd really like to see some progress for me.     

Janet thanks for the link. I've seen that one. I'm sure if its true, mine's caused from a variety of trauma. Namely surgical and infectious. I have scarring to the dura as I do not have a plate or replaced bone. I fear I may have epidural fibrosis as well.

Bridgie

[lifeisgood]

I am curious if the diagnosis was the result of a MRI or other test of if it's based on your symtoms.
I am 5 years out and am sorry to report that I suffer from what could be described as the neuropathy.
I did not get an MRI. I have a script but haven't gone to fill it yet.  The place has a high resonance imaging specifically to view the nerve.
I had pain prior to surgery which according to the info posted, could be a neuropathy. I had facial numbness pre surgery too and the tumor was very much so affecting the facial nerve.  So, this would make sense.

The good news is that I can somewhat contol them and know what triggers them.  For me, it's period and hormones.
I get about 2 per month and they last between 3 and 4 days each.  If I catch them early enough, I can usually kill the pain with imitrex or tylenol.  I feel totally hung over with these things.  I also started taking Effexor 7 months ago and it seems to help.  I take 37.5 mg religiously per day.  (I've heard if you don't take your dosage it can trigger a bad headache)

I went the Diamond headache clinic over 2 years ago and was diagnosed with atypical migraine. I've seen several doctors and nobody quite knows what to do with me.  I am pretty much just living with them and rejoicing when they don't hit.

Mary