Inflammation/or scar tissue around the trigeminal nerve?

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.

hi allthewhile11....

interesting to read. sorry for my confused response.

where did he actually felt the "bump" ? inside mothy ? gums ?

what i realized - the doctors don't know much.,. and theres a lot not seen. at least you have a good doctor that tries to refer to these changes.

i've had changes in my bone..inside and outside mouth.. .and in the good case the doctors said it was a coincidence.

i suspect there IS some bone infection etc. but since most of the XRAYS are ok...the doctors can't really go on from there.

so fruastrating... cause it's our LIVES we are talking about

i've justed talked with a friend on this forum about the condition called NICO.

but it's so hard to test these things...

i'm so not conviced the my nerve damage is physical. it can be due to some infection... but for the doctors - if it isn't the the XRAYS it doesn't exist.

Is inflammation detected on an MRI?

I find that when I am in a car, I get extremely tired from the light which I thought was a side effect of tegretol. I find that when I am sitting by a window on a sunny day I get stronger twinges of breakthrough pain, so I find what you are saying interesting.

I would like to know what bacterial illness you are referring to. We seem to have similar stories.

I think mine is caused by scar tissue from a previous brain surgery.

I have this spongey feeling bump right on the midline of my skull before my ear where I've had multiple surgeries and the doctors are starting to come around to the idea that this is the culprit for my pain.

I'll let you know how my diagnostic process unfolds regarding scar tissue and TN!

1 Like