Has anyone here (or anyone know anyone who has) had a trigeminal tractotomy and/or DREZ??
I have had ATN for 8 years ontop of other types of facial pain (due to an Ehles-Danlos Syndrome-caused injury). I'd really love to know if it helps with ATN and other types of facial pain as well. Thank you
hi Christie,
Yes I had trigeminal tractotomy last year for atypical GPN (glossopharyngeal neuralgia). I did not have DREZ but Trigeminal tractotomy using needle.
unfortunately it didn't work for me.however it apparently does work for (if I remember correctly) more than 50%. you can find studies online.
as you may know it's a rarely performed procedure. my surgeon said he would have been surprised if TT was done even once in the US in the 12 months before I had procedure. i searched high and low on line to try to find someone who had TT but was unsuccessful.
TT is specifically, i think exclusively done for people with Type 2/atypical TN and GPN.
It's a very safe procedure. virtually no risk involved. they keep you overnight in ICU as a precaution. I had no side effects not even a headache.
my surgeon forewarned that the procedure itself was hideously painful. it was. i was grateful that he fully informed me. it's spurts of intense pain lasting maybe 30 seconds. if it's too much they can stop and once they stop there's no pain.
i'm so sorry you've been suffering with ATN for 8 long years. if you decide to go ahead with TT i really hope it works for you.
please don't hesitate to let me know if you have any questions.
Thank you for sharing!!! What pains are you able to feel and not feel afterwards? Bone pain? Muscle pain? Toothaches?
ithurts said:
hi Christie,
Yes I had trigeminal tractotomy last year for atypical GPN (glossopharyngeal neuralgia). I did not have DREZ but Trigeminal tractotomy using needle.
unfortunately it didn’t work for me.however it apparently does work for (if I remember correctly) more than 50%. you can find studies online.
as you may know it’s a rarely performed procedure. my surgeon said he would have been surprised if TT was done even once in the US in the 12 months before I had procedure. i searched high and low on line to try to find someone who had TT but was unsuccessful.
TT is specifically, i think exclusively done for people with Type 2/atypical TN and GPN.
It’s a very safe procedure. virtually no risk involved. they keep you overnight in ICU as a precaution. I had no side effects not even a headache.
my surgeon forewarned that the procedure itself was hideously painful. it was. i was grateful that he fully informed me. it’s spurts of intense pain lasting maybe 30 seconds. if it’s too much they can stop and once they stop there’s no pain.
i’m so sorry you’ve been suffering with ATN for 8 long years. if you decide to go ahead with TT i really hope it works for you.
please don’t hesitate to let me know if you have any questions.