Possible Atypical Facial Neuralgia?

[lkopin1224]

A friend, 34 years old, has been experiencing facial discomfort for approx. 4 months now.  It has been primarily on the left side, but has also been in the jaw and neck and on the right side.  There has also been occasional numbness in his arms.  He had a cyst on his eardrum removed as a teenager.  He has had an ear infection in the same ear while this has been happening and treated with lots of antibiotics.  It is now to the point that the tension/tightness in his face has not gone away.  The dentist has ruled out any dental problems.  The ENT he saw said further testing was not necessary.  I am getting worried, as he is constantly commenting about its affects on him... he has stopped doing things in hopes of alleviating it, none of which have worked.  Physical labor makes the feeling more intense.  Is there another doctor he should be seeing and what should the course of action be?  Can you recommend any specialists in the Akron/Canton area?  He is worried that it is a tumor and I feel it sounds like the atypical facial neuralgia, do either of these sound like possibilities?  If not, is there another path he should be on in terms of finding answers?  Thank you.

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

Tightness on one side of the face can be due to a condition called hemifacial spasm. It is caused by irriation of the nerve to that side of the face, usually by a little loop of a blood vessel near where the nerve comes off the brainstem. There is effective medical and surgical treatments for this problem. There are other cause which are more rare, and may be more liekly if the conditon is bilateral.

It is important to evaluate for a local cause such as a tumor, as he has done with the ENT evaluation. '

If you are in the Akron area, why not drive the extra hour and see a neurologist at the Cleveland Clinic. We see plenty of patients with hemifacial spasm, and can also do the surgery here if the diagnosis is made and is necessary. See the this website for appointment details for a general neurology appointment

Good luck

[lkopin1224]

What worries me is there is the possibility that it is on the other side as well since he is not sure if he has complete feeling on that side due to the surgery he had as a teenager.  He has also recently been diagnosed with Cholesteatoma in the same ear he had the surgery on- we are not sure if that could be causing the other issues.  I am concerned because he just recently started complaining about the "falling asleep" feeling that was in his arms being in his legs as well.  Would Hemofacial spasms be causing those issues as well or is everything likely to be caused by the Cholesteatoma.  Thank you for your time!

[hamerhood]

I wanted to reply to this posting because I have Behcets Syndrome, a rare, vascular, auto-immune illness.  Chronic vasculitis in my cranial region eventually gave me terrible face pain and numbness, unrelenting pain in my ears, teeth, throat, eyes, sinus boney area, head pain, etc.  I too spent many hours at Doctors and Dentists, but finally a great nurse in the ER suggested neurology.  It was discovered that I had blood veins and arteries laying and rubbing the cranial nerves around the brain stem area.  I eventually had decompression surgery done on both sides, one side was done twice.  But, if not for the surgery I would sitll be in excruciating pain.  Although surgery isn't for everyone, for me it saved my life.  I would not have been able to have a life without relief in the pain.  I hope you make sure that you have your friend checked for compression of the cranial nerves.

phh

[Organdonor]

I was having those exact symptoms for many months.  Recently I had my Ambien CR changed to a small dose of valium at bedtime.  Within 2 days almost all of the face pain was gone.  I also have spondylolisthesis which was causing terrible thigh pain and a pinched c-5/c-6 nerve which was causing bad arm pain.  Those also have improved greatly.  :)  The sleeping problem unfortunately hasn't improved.  :(

I'm not suggesting that valium or any particular medication would work for everyone, but I had tried other medications and seen various doctors, including dentist.

Have since seen a neurologist who thinks my facial pain is related to TMD..also referred me to a sleep doctor for possible sleep study.

Wishing you all the best and soon to be pain-free!

[painfree1]

Based on you description there could be Myofascial
Trigger points in the Sternocleidomastoid Muscle(S) or knots in the muscles in the front to side of the neck.  There are two divisions the sternal and clavicular.

Trigger points in each division can evoke referred pain, autonomic phenomena or proprioceptive disturbances.

Pain can be felt above the eyes(optical migraine), in ear, cheeks, to the throat, back and top of the head.

Autonomic phenomena from the sternal division involve the eye and sinuses, while the clavicular division are more likely to concern the forehead (sweating of the forehead on the same side and ear(vertigo), including dizziness related to disturbed proprioception and spatial perception.

Dr.’s may diagnose this as atypical facial neuralgia.

The motor nerve fibers of the sternocleidomastoid muscle have an unusually close association with the brain stem. They pass through the cervical portion of the cranial nerve XI (accessory nerve). These motor fibers of the cervical portion arise within the spinal column from the ventral roots (motor fibers) of the upper five cervical segments and ascend, entering the skull through the foramen magnum to join the cranial portion
of the accessory nerve.  Together, they exit the skull in close association with the vegas nerve through the jugular foramen. If the trigger points are active they my impact the function of the vegas nerve and cause your heart rate to change.

Trigger Point therapy may help resolve your symptoms and function.

Trigger Point overview Myofascial Trigger Point Therapy is a therapeutic discipline and technique used for the relief of myofascial (myo=muscle; fascial=connective tissue) pain and dysfunction. It is a modality resulting from the lifelong medical careers of Drs. Janet Travell and David Simons. Myofascial Trigger Point Therapy is recognized by the American Academy of Pain Management as a modality for the treatment of myofascial pain and dysfunction.

You may want to research this type of pain and dysfunction. You may have access through your medical library to the Travell & Simons’ Myofascial Pain and Dysfunction Trigger Point Manual Volume 1: Upper Half of the body and Volume 2: The Lower Extremities ISBN 0-683-08363-5 and ISBN 0683-08367-8. These volumes cover most muscles and associated pain patterns in the body including those which cause your pain.
I hope all works out for you.