Today I will start a new blog entitled the "The Amyloid Adventures." This blog will continue the story but now from the medical perspective of treating the amyloid and its deposits on my nerve. Curiously enough, a month ago as I was driving on Route 5 in Oregon from Eugene to Portland I was surfing radio stations when an announcer said, "And now, we have someone on to talk about trigeminal neuralgia." At the time I experienced numbness not pain, but I listened raptly to the half-hour program and learned about the experience. I do not have that specific diagnosis, but now that the numbness is coupled with ache and pain I can certainly sympathize!
I am initiating this blog because it turns out that such a deposit, at least anywhere in the gasserion ganglion (where all the cranial nerves meet) is extremely rare, and by the best PubMed count there have only been something like 22 cases altogether and 12 on the trigeminal ever reported since the first in 1957.
So maybe in my experience there will be something to offer other people with the disorder, if that is what it is, or people who have "mystery symptoms" and no good diagnosis or people who have any variety of trigeminal trouble, including neuralgia, who might find this new blog of interest.
A bit of anxious anticipation introduces this blog because as many know "amyloids" are sometimes associated with chronic neurological disorders. I have asked that more analysis be done of the tissue removed from the nerve during the surgery, and as of this posting the results are not in. Apart from knowing that I should have another MRI in six months there is no course of action going forward. So there is yet a lot to learn, and lot to experience (especially as I attempt to go back to work full time) and a lot to share about what is to come.
Welcome to this new blog: http://amyloidadventures.blogspot.com
