I’m a single man living in Arizona with 60 years under my belt. My TGN started in the middle of 2014 with slight jolts along the right side bottom of my jaw, triggered by touching my lower right lip. My mother had TGN in the very late ‘70s, so I recognized the symptom right away. Her terrible pain was relieved 100% around 1980 by an RF rhizotomy done by Dr. Tew in Ohio, and now 90 she’s been pain free since.
My pain went away at the end of 2014 though, so I didn’t pursue treatment. In June 2015 it came back however, and I started on Gabapentin. That didn’t quite do it, so I was put on Oxcarbazapine as well. Unfortunately I developed a terrible rash because of these (I know it was the Gabapentin and think the Oxcarbazapine made it worse), and so around February of 2016 was put on Baclofen instead and told to look into surgery options.
The first place I went to I’ll call the clinic. Six weeks before the first available appointment, but the Baclofen was doing OK so I stuck it out. Day of the appointment it was recommended I have an MVD done and I agreed. Over the next few hours however, the reality of a 3-month recovery scared the heck out of me. I’d be alone at home with no support from family or friends. Also, the thought of a hole in my head versus a needle in the cheek like what cured my mom just freaked me out. So I cancelled the MVD and asked for another appointment to discuss the options further. Another six weeks for the next available appointment!!! The Baclofen was still working OK, so again I stuck it out. I explained my concerns about the MVD recovery and desire for the rhizotomy, but was eventually told they wouldn’t do the latter.
In June I went to the institute, where I got an appointment within a week. Options were discussed and I agreed to try the Gamma Knife procedure, which was done at the end of that month. The procedure itself was a breeze, but my wrist was sore for a couple of weeks afterward, apparently from a problem with the IV needle. The TGN pain gradually went away though, and by the end of August it was gone.
Around Halloween, I awoke with a sharp pain. It was back. Frequency and intensity both increased over the next three months and on the 20th of last month, I had a thermal rhizotomy done at the institute. Moderate numbness of my cheek, jaw, the side of my face, half of my tongue and down my throat a bit. Immediately there was a terrible pain in my ear, and sensitivity around the temple. My cheek feels sore as well, but I understand all this soreness and pain should decrease and be gone in a month or three. Worst part is the TGN pain is still there and as bad as ever. Now two weeks after the rhizotomy, it’s hard to talk, chew and swallow. So I’m back on the Baclofen at 20mg, four times a day but I still have cringing pain randomly throughout the day.
What do I do now? I understand that another rhizotomy should take care of it, as they err on the side of less numbness. That makes sense. Do I wait until my ear and jaw stops hurting before I do another procedure?
Should I seek yet another facility, the first having lost my trust and the second having failed twice (although I really don’t fault them for the results)? I understand the thermal rhizotomy procedure is somewhat of an “art”. Should I seek a facility that specializes in it regardless of whether my insurance will pay for it or not?
If a second rhizotomy results in more numbness of my tongue and throat, I’m worried about problems swallowing and choking as I eat most of my meals alone. Are such problems typically encountered with rhizotomies involving the lower branch of the trigeminal nerve?
I’m also concerned about diminishing options. Is an MVD still an option after a Gamma Knife and two rhizotomies?