This option has
been offered by a few experts in the area, if nothing else works after two
years, and the pain is not controllable. It is a very aggressive
approach, and not without significant negatives.
The complete loss of sensation within the tongue can be
just as bothersome as a painful tongue. I have had both, as my
tongue was numb for a month after an injection (and before it resolved as
a painful nerve problem). I might consider this option, however many
experts have also advised against it. If you just cut the nerve,
there is a chance that the end of the nerve will form a traumatic stump
neuroma. This means that you may have pain that feels like it is
within the tongue, but no ability to feel anything with your tongue.
Kind of the worst of both worlds.
Apparently there has been some use of a high tech
instrument called a gamma knife, to destroy the ganglion cells, so that
the nerve does not try to regenerate. I know almost nothing about
this, except that I suspect they are not able to pick the lingual portion
of the ganglion out from the rest of the 5th cranial nerve, which would
supply the face, cheek ect. Having these all numb would be a
significant issue. The risk of chewing on cheek and/or tongue
without realizing it would be significant.
This radical aggressive approach sounds like it would
only be an option for those that have debilitating pain all of the time,
which has been unresponsive to all other modalities of treatment. It
would end any chance of recovery.
It would probably also end any chance that some new
therapy might be effective.
I have recently been informed of another approach called
percutaneous trigeminal rhizotomy, in which a neurosurgeon is able to
probe the trigeminal ganglion with the patient awake and try to ablate
just that portion that is leading to the pain syndrome. I am still
researching this option. Apparently there is still a 5-10% chance of
a residual pain syndrome with this procedure.
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