Trigeminal Neuralgia*

My name is Cathie Harris. For the past 6 years my husband Eddie has suffered with debilitating facial/head pain. After numerous trips to ENT, Dentists, Optometrist, MD's and neurologists, and being put through numerous tests including CT scans and MRI's he was diagnosed with Trigeminal Neuralgia. We have had conversations with the neurosurgeon regarding radiation to the are or having the microvascular decompression surgery but his symptoms are not like the "typical" "Sudden shock like pain lasting briefly". His pain does come on suddenly but the pain isn't like "shock like", his pain is excruciating and is more in his face but radiates through the entire side of his head. His pain usually last from an hour to several hours and most often happen at night.

All of the research we have done on TN is totally opposite of his symptoms. Could you please pass this email on to Dr. Bruce E. Pollock and his colleagues and see if they agree with this diagnosis before we agree to the microvascular decompresson surgery. We can send the latest MRI if necessary.

Thank you for your help in this matter,

Cathie

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.

@deneenm and @cdharris -- Depending on where your loved one is experiencing pain, they may try: Sensodyne or other sensitivity-type toothpaste (eg., my pain was at the gum line); or lidocaine patches if it's on the face or head; and / or CBD oil -- orally or topically. All these can may be obtained over the counter.

Luckily my TN pain has been sporadic through the 40 or so years I've had it, and has not caused me serious issues... until last year. In 2020, I experienced a prolonged flare-up lasting two months, which slowly went its way over a period of a week... and has not returned. I know I'm blessed!

My best to both of you, and your family member.

I am going to JUMP right in here and let everyone know that I was Finally Diagnosed with....Trigeminal Neuralgia.....
I was a member of the group to do with HEAD DIZZINESS.....undiagnosed...my name is "tootsbury"
Have a Long story but will make it short...had sometimes Severe Pain..from top of head to chin on right side of face...sometimes any of those places,sometimes All of them...dental Specialist sent me to
A "head " Dr and by that time I had tracked down info on the
Trigeminal Nerve, ..wrote it down to ask about it and when the Dr saw it he said,yes that is what you have. Next step,saw a Neurologist
and he has me on Topiramate 25mg. Will give Update later.......

I have this too very painful comes on me when I am in the wind etc HAVE A APT COMING UP IN Fargo ND It strikes when you least expect anything

Can you give me the person you will be seeing in Fargo ND. Thank you

Hello @pollysparrow and welcome to Mayo Clinic Connect. I am glad to read that you are seeking care and answers for your pain and symptoms.

It looks like @pjf is interested in learning about who you will be seeing for care in Fargo, ND. Are you willing to share?

Suppose to see Alexander Drofa,MD 700 1ST AVE S FARGO ND 5-20-2021