Hello everyone, I am Justin, a patient from China, because of persistent upper gum swelling and pain, I had a sphenopalatine nerve RF pulse this week (they don’t do radiofrequency thermocoagulation here, that will damage your nerves), the operation was under local anesthesia, I can communicate with the doctor, the RF needle entered from near the cheekbones, after locating my gums, the treatment started 2 times, 5 minutes each time, I could feel the constant beating current on the gums.
The whole treatment lasted for half an hour, unfortunately, after the anesthetic subsided, my pain did not change, today is the third day after the treatment, the pain is still there, I contacted the doctor, my next plan may be botulinum toxin treatment, I will keep it updated.
Joshua, I’m so sorry, that sounds torturous. Have they told you if those procedures work on ATP? Do you have ATP 1 or 2? One I think had the electric-type shocks? I have TN1&2 and the docs have told me that treating the type two kind is not nearly as straightforward. How long have you had this? Hope the RF kicks in unexpectedly, for you.
Hi Sleopard41, I’ve been sick for a year now, the pain has shifted from the side of the tongue to the gums, because I have persistent pain, I think it’s TN2 and AFP, is there any effective treatment here in the United States?
Oh my goodness! I’m so sorry, Justin…I am awful with names. As for if the US has anything, not really. That is the thing with ATP and TN2, they don’t respond well to anticonvulsants, don’t usually stem from an impinged nerve in the brain stem…the only thing I’ve found that has worked any is—the right medications. I’ve tried nerve blocks, basically you name it except radiation or brain surgery, these past 10+ years…now, I will say that the first several years you should have some spontaneous remissions…some people stay in one…have you been tested for MS? I hope this isn’t too depressing…I wish there was some fast cure, but there just isn’t. I’m so sorry. I do understand.
Never mind , we all know this disease destroyed our life , memory is one of them .
The doctor said my next treatment was botulinum toxin (BOTOX) injections, I searched your comment history, you seem to have tried botulinum toxin therapy, how many injections have you tried? How many cycles have you tried? Does this treatment work for you?
So true. Yes, Botox was the first “injectable” I tried…I tried three rounds (maybe four?) it didn’t help. I even tried nerve blocks and powder coating the nerves…none of it worked. My meds, a compound cream and paying close attention to triggers is it, for me. I hope you get relief from the Botox. There is a place in CO that is injecting stem cells…that might be something to look into?
I did some research, on the one hand, there is no more evidence that it is effective for atypical facial pain, and on the other hand, in China, stem cell therapy is still in the research stage and is not approved for clinical use
Your research is right. China, ironically, was at the forefront of research pre-covid. I was following a doctor from Australia that had a practice in China and a bio lab there…and three of his patients that had similar cases to mine…it was exciting and hopeful…then his lab was shut down and he went back to AU during the lockdowns and due to his age, I suppose, he contracted the original covid and passed away. He had published quite a lot. There is the place in CO (regenerexx), but as you said, there just isn’t enough evidence these things work.