I’ve been struggling with atypical GPN and possible Occipital Neuralgia for three or four years now. I’m still not entirely sure what exactly I have.
I’m curious what this group thinks is the best place in the US (or the world) for diagnosis and treatment of facial neuralgias. If you could go anywhere for treatment, where would you go?
I’m pretty sure I have Atypical or TN2 plus Occipital Neuralgia. I live in Pennsylvania. I went to Johns Hopkins and a lot of other specialty hospitals on the East Coast hoping for an answer/diagnosis/some direction. So far, no luck despite the fancy websites advertising “we specialize in Trigeminal Neuralgia PLUS Atypical Facial Pain.” I think there are a number of neurosurgeons that specialize and are very good in treating TN-1. I’m gathering that finding a specialist in Atypical Face Pain (which some categorize as everything other than TN-1 despite the current medical guidelines) is difficult. I have an appointment with Dr. Jeffrey Brown, a neurosurgeon in Long Island, NY. He comes highly recommended and his office staff was very helpful. Neurosurgeons operate. If there is no surgery in the future, then someone else is probably best to treat you in the long term. I’m going to Dr. Brown to rule out TN-1 or any other condition that has a suitable surgical remedy.
On a side note, I have had tremendous success with Botox and upper cervical therapy for the Occipital Neuralgia. My Occipital Neuralgia was completely disabling and often led to Migraine symptoms. It is now down to a dull roar with occasional flares and a few pain bursts per day but nothing continuous like it was.
My facial pains consist of shocks in mental nerve and general ear, eye, jaw, top of head, and cheekbone aches. Hopefully, Dr. Brown can properly diagnose me and maybe send me to someone if he isn’t the right doctor for me. I see Dr. Brown in late July. I will let you know.
I have a good friend who is a ENT surgeon, and he suggested John Hopkins on the east coast. Personally, I went to OHSU in Portland Oregon, as I’m somewhat local, but there’s a lot of other reasons… As a teaching hospital, they generally have a better record of success. In addition, the senior surgeons are very clued in as they teach also.
Indeed I had Dr. Birchiel as my surgeon, and he’s somewhat of a world authority on facial neuralgia and actually has a lot of MVD procedures under his belt (and hence experience). He even developed some of the techniques so he’s really the top guy in the US, if not the world.
Another good thing about OHSU is they conduct a lot of research… I was able to provide them with some genetic samples as they are conducting research to find a genetic link to Trigeminal Neuralgia, which is strongly suggested and could lead to gene therapy treatments within 10 years… That’s a good thing to be a part of!
Good luck with the search, and the treatment wherever you go…
Thanks for the reply! Besides GPN, I suspect I also have Occipital Neuralgia. I think that’s the source of the pain around my ears, but I’m not sure. From what I know so far, surgery isn’t a good option for me, although I’ve wondered if my posture and hours spent hunched over a keyboard have worsened my condition.
I’m curious about your experience with Botox. Did you have to find a pain specialist who was experienced with it? How did you find him? What kind of research were you able to find about Botox for neuralgia?
I was referred to a neurologist who also happens to be a pain specialist. I was very lucky to have found him. He was the one who suggested Botox. He treats all pain - back, knees, cranial, etc. though I do think he sees mostly pain along the the spinal cord. He works out of pain center - not a neurology office. Botox has been a miracle for me - I hope it keeps working. Like I said, I’m not pain-free. There are days when I wonder if I can increase my meds, then there are days when I wonder if I should start tapering my meds. I just stay at where I am (600 mg of gabapentin, 40 mg nortriptyline, .025 mg klonopin). I have wiggle room in all of these if I need to increase. The drug that worked best was nortriptyline.
And yes, I was told posture is a huge part of pain. It is all interconnected. My physical therapist gave me great exercises that I do in the car. They are SCM stretches and chin tucks. He also said that naturally our heads should rest on the car headrest when we drive. Mine didn’t. I was accustomed to driving hunched over. I thought everyone drove like this until I paid attention to my 16 yr old son - sure enough his head is on the head rest. Once I became aware of my posture, I knew how bad it was.
Gosh Mel, there is so much that is unknown about this crazy stuff. After I read an article about Botox , I mentioned it to my neurologist and he thought I was crazy. My new doctor is much more open-minded and we’re even talking about cannibus. I have heard that Johns Hopkins is superb, but you need to firstly identify what exactly you are suffering from. Good luck and keep in touch. Terry
MarkinKS, Hi and hope this finds you well. There are many great hospitals and doctors, but just like Meldaver, you need to get a good diagnosis first. Good luck. Terry