Long story short. I finally got an MRA yesterday. A very clear compression was found on the right side. Two MRIs over the past year - one regular with contrast and one with contrast and a thin slice to the trigeminal nerve showed NOTHING.
The doctor who gave me the MRA is world-renowned - told me point blank I have TN. He thinks TN is black and white. You have the compression, you have symptoms - - - you have TN. Told me I should consider MVD because after 8 years of pain, long standing pain relief results from a MVD decrease.
I just don’t feel like I fit into the classic TN category and the surgery is MAJOR with possible side effects. Back in 2013, I had a dental implant - no where near the nerve on XRAY. For about two years, I had electric tingling along the mental nerve. Not painful at all. More like a tickle. In Jan of 2016, had a tooth pulled that was root canaled twice - upper right. The tooth showed no signs of anything on the XRAY but I had a bout of MRSA in my right sinus and the tooth hurt when I chewed hard food (not that painful - more annoying). My ENT said the tooth could be the source of a continual infection in my sinus since the roots penetrated the sinus floor. The tooth was extracted - there was decay in the root. After the extraction, the pain moved to a dental implant in front of the tooth. That’s when things got interesting. I started with occipital headaches off and on from March to July of that year with a few full fledge migraines which I never had before. I had a cap put on a tooth in July and the dentist had my mouth open for two hours pressing on my lower jaw. After that appt, the occipital headaches became daily and severe. And the chin tickling that I had years prior turned into zaps. In October, the weird sensations in my face started. Little stings here and there but nothing too bad. All right-side by the way. My main complaint was a horrific headache. The facial stuff was weird and concerning, but not too painful.
I’m about a year out from when hell broke loose last year and I have to say, I don’t have pain-free days, but I’m ok. I’m so much better over the last few months. 600mg gapapentin, 40 mg nortriptyline, .025 of klonopin, botox every 4 months.
The pain I had in the back of my head is now in my temple area, but is now more pressure - I can’t wear any type of glasses because it irritates my temple. The doctor yesterday thinks I have TMJ or TMD in addition to classic TN. He said temple discomfort is not TN related. I’m majorly confused here. The chin zaps are honestly the most scary part now but not that painful - like someone shooting a rubber band from across the room. I can have days where it’s all day then days where it’s all calm. Some zaps are very faint and others more pronounced. My main concern is the other aches in my face that keep me from doing any real exercise or make me feel like there is a balloon under my temple moving around or various squeezing/ tightening in eye area. Just enough to keep me feeling “not normal”.
I feel like I have ATN. The doctor says that the chin will get worse over time and I have classic TN. Compression equals classic TN.
I do feel better now that warm weather has arrived. I’m just going to see what happens over the next year and not rush into any type of surgery.
Any opinions or similar experiences? The doc did say that because I’ve had a lot of dental work (I’m 47 yrs old), it could have “kindled” the TN that was bound to happen anyway.