I’ve been seeing a chiropractor specially trained in this area for years as frequently as several times a week and she was a big factor in my being able to keep making it to work for five years after the first signs of geniculate neuralgia, hemifacial spasm and synkenesis. She does amazing cranial work that unjams my temporal bone and sphenoid.
Now that I’m retired on disability and get specialized physical therapy at OHSU for these conditions as well as Botox and lidocaine injections, I see my chiropractor once or twice a month when the pain is unmanageable. She’s been amazing and continued to look for more and more trainings and techniques years before I finally found a neurologist (I saw several) who diagnosed me.
Because I have these conditions on both sides I’ve been told by OHSU that they’re inoperable so I continue to get acupuncture, massage, trigger point injections, Botox, chiropractic adjustments and physical therapy as well as slathering my face, neck and ears with lidocaine/prilocaine cream at night and taking Lyrica and opoiods. All of these things help and my providers are aware of each other and the role they each play in helping me to function.
Life has gotten a lot better but I want more. I’m starting to talk to the doctors at my pain clinic about surgery and I’m going to be contacting the Mayfield Clinic for an evaluation. My conditions were caused by neuro-Lyme and no doctor in Oregon will treat Lyme disease for fear of losing their medical license. OHSU is particularly biased and are one of two facilities that strongly influence the “no Lyme in Oregon; no Lyme treatment” Oregon Medical Board policy. Even if you have seven positive Lyme tests, they say it’s not Lyme. Insurance companies love our policy.
I firmly believe that telling a neurologist in the OHSU movement disorder clinic who gave me Botox injections that I’d been treated aggressively with IV antibiotics for Lyme (stupid me) caused the other neurologists and specialists to treat me with indifference even as they made new diagnoses for other neurological disorders. The much lauded head of the facial pain clinic wouldn’t allow his assistant to schedule an appointment for an evaluation. No one with this obvious of face distorting painful hemifacial spasm should be dismissed without a thorough examination to determine if it’s operable. And once geniculate neuralgia was diagnosed I couldn’t get their specialists to see me. Every appointment I scheduled for their recommended follow up treatment was cancelled a few days before they were to occur because “the doctor doesn’t treat that condition”. They diagnosed it, recommended treatment and posted their recommendations in My Chart but as soon as Lyme was mentioned scheduled appointments were cancelled and notes were deleted in My Chart. Geniculate neuralgia and treatment recommendations was replaced by"ear problems."
I wholeheartedly endorse trying anything and everything to find what works for you to reduce pain and improve quality of life. It takes trial and effort to find the right providers and not everything is right for you. In my case I was told by a doctor at OHSU’s pain clinic last year that they didn’t have a lot to offer because I was already doing most of what they recommend.
Good luck to you!