Trigeminal Neuralgia

[Rockinrobin]

I have/had TN. I took me 6 years to finally get a diagnosis and treatment. In short, due to other complications from the med's, i oppted to have the Janetta Procedure done. I continue to have these bouts where my eye has pressure on it, my jaw is sore, lip goes numb, pressure in the ear, and now it travels under the muscle of the jaw to the neck, into my shoulder - a severe burning down the arm to the thumb, down my back into my rear end and down the leg to the 3 toes that go numb. My eyelid yesterday swelled up pushing on the lower eye, and the band of the sinus swelled, this continues like a ballon that can't take anymore air and continues to stay for days, and without warning deflates. my neck and arm have been on fire for 1 month. I feel right now as fustrated as i did when i went from dr to dr to find out what was wrong with me before. As I write, I feel like a needle is stuck in the end of my shoulder bone. My tongue also swells. I started again to self-medicate myself with some neurontin. my neurologist office told me that they could see me next week. In the mean time, what can this possibly be? I looked like someone with bells palsy yesterday, however, i can close my eye, and wrinkle my forehead. I just don't understand how the ENTIRE left side of my body and agonize so much.

[corba15]

I have very similar pain.  Terrible burning in the left shoulder, numbness of the arm, hands, pain in left leg, and symptoms of TN and occipital neuralgia.  My pain is constant.  I have only suffered the true TN pain twice....but the burning, face swelling, aching, stabbing pain is always there.  It has made my life completely different.  I'm afraid to go anywhere because of the severity of the pain and my quality of life has gone way way down the hill!  I go to a neuro surgeon on 2/17 to see about possible surgery.  He wants to do microvascular decompression.  I am 38 and hopefully have many years ahead.  Don't want to live the rest of my life like this.  I take neurotin and vicoprofin and it eases the pain....but it NEVER stops!  So, I feel for you.

[TimR]

I would like to understand how to determine the top Trigeminal Nerve clinics/doctors especially for severe cases where surgery is the 'next option'.  Please note that this is not in reference to a patient at the Cleveland Clinic.  Thank you for any help

[CCF-Neuro-M.D.-CS]

The symptoms you are describing are not trigeminal neuralgia. You need to have a neurologic examination performed to define what abnormalities are present. Then perhaps a MRI of the brain and cervical spine may be necessary to exclude structural lesions or inflammatory conditions. Other disorders which may be evalauted include connective tissue disorders and auto-immune disorders such as lupus. Good luck.