My doctor told me he can feel a "weird" spongy type of material around where the nerve enters the face on the TN side, about half an inch wide all the way around the nerve in that area. It is not on the other side of the face. He suspects that it's inflammation/or scar tissue. Has anyone else been told this?
If it's inflammation, I believe this is just further evidence that the long standing bacterial illness I have which loves to attack the brain and trigeminal nerve itself is the cause of all this. It's known to trigger extreme inflammatory responses in the body. I'll be mentioning this inflammation/or scar tissue finding to the doctor I see who will be treating the bacterial illness and see what he thinks of it all, possibly if he's seen this in other patients he's treated who have TN as a symptom as well. It's just so weird and in a sad way liberating to be seeing internal physical evidence of pain that no one can see.
I also wonder, if this much inflammation/or scar tissue is around the nerve on the face, how much is around the actual root of the nerve in the brain? It's a little bit scary to think about. I now know that absolutely the cause of the TN is from within the brain much more than tactile stimulation. This doctor poked and prodded my face on the TN side, and while it was painful, it did not trigger a massive TN attack that lasts for 6 weeks or more. I was a little sore for a few days but not much. However, if I look at a window in the daytime or go outside even in the car with tinted windows (which I haven't been able to for the last year because of all of this), or sit in a room lit by daylight, the pain is triggered and it is excruciating and lasts for about 6 weeks at a time. So absolutely this is obviously caused by neuroirritation of the optic nerve and then trigeminal nerve, as a result of light exposure, which light irritation is very common and consistent with the bacterial illness we believe to be the cause of the TN.