Hello @cdharris, Welcome to Mayo Clinic Connect. We are not able to communicate directly with Mayo doctors as we are patients like your husband. Am I right to assume your husband has been diagnosed at the Mayo Clinic? If you have, you should be able to use the Mayo Clinic Patient Portal to send your doctor or surgeon a message through the patient portal.

Hi @cdharris, John is right. Mayo Clinic Connect is a place to connect with other patients and caregivers like yourself.

Should you wish to consult with Dr. Bruce Pollock and colleagues, please contact Mayo Clinic in Rochester, Minnesota. Here is the contact information http://mayocl.in/1mtmR63

Mayo Clinic experts may be able to consult with your current care team with respect to the diagnosis and proposed treatment options.

Cathie, have you and your husband considered getting a second opinion at Mayo Clinic?

@cdharris-Hi. It can be a long journey when trying to navigate/figure out cranial pain and where it is coming from. While you have had all of the MRIs/CTs, my question is did “they” determine anything from there?
•Trigeminal (strongest cranial nerve) and Neuralgia just means nerve pain. It can mean many other things and it is a very broad diagnosis, so don’t let that scare you. “Neuralgia” “Neuropathy“ both are essentially pain. It is how it is perceived by the patient. And if your husband is feeling it’s atypical from the shock like pain coming on, then let that be the guide. Don’t get too caught up on the word of the diagnosis more over how your husband explains it.
•If most people are given an MRI they will see a slight communication between the trigeminal nerve and cerebellar artery. These can be common findings. So if you were told that, don’t let that be the sole driving factor.
•Curious if the dentist, ENT and ophthalmologist you saw, shared any vested interest in the Trigeminal nucleus and the musculature into the neck and head.
•Dentists will listen for a click to rule out TMJ, but so asked neck head muscles don’t always render a click noise in the jaw joint.
•Optometrists main concern is vision, of his vision is fine. They pay no more attention to pain.
•ENTs should educate on TMJ tightness but don’t, and will only be concerned about eye/head pain coming from a sinus region. Once they rule that out, then they pay no mind to other pain.
•Neurologist vs. Neurosurgeon-a good Neurologist will ask about lifestyle, when the pain starts, where it comes from etc...they are very well aware that most head pain starts with tight neck, jaw muscles and radiate into eye and head.
If you end up at a Neuro “surgeon” they will most likely only offer you surgery. Keep in mind this is all elective meaning, you have a choice to believe if this is what is needed or not.
•Question-has his neck/back/shoulder muscles ever been checked for trigger points, spasms and tightness?
How does he hold his stress?
•Have you met with a physiotherapist?
There is a muscle are muscles in the neck that can lead to all kinds of facial head pain, especially at night when tightness builds while sleeping.
I would exhaust all efforts with someone who is looking at his musculature, especially in the upper cervical spine. Trapezius, SCM, Temporalis muscle.
This is a photo of the pain pattern that follows a tight neck muscle.
Just a thought. Hope the extra input helps.

I do not no if this is were to ask anything but your husbands pains are same as mine,I have taken several different meds very little relief have had decompression surgery lasted a few months this past March 2021 had CyberKnife surgery pain is worse now than before. trying to get into Mayo to hopefully get some answers and relief .