unexplaned face pain

[vickie98292]

My niece was told that she has a disease called PI for short because the name is so long. This pain goes up the side of her face starting at the ear and to the top of her scalp. To move even her eye brows causes sever stabbing pain. She also has a tumer on her macula in her eye They dont want to opperate on her eye at this time because it could detatch her retina. Could these two things be related? And if so what can she do for the pain which she says is torcher. Thank you. Vickie

[gungalmama]

I have unexplained facial pain on the left side that starts in the center of my cheek through my eye, along to my ear...like a triangle.
Only on the left side. It started after a root canal(2006 and never stopped) and I have had two surgeries to remove the upper root, been to alternitive people and regular dr's, dentists,ENT, Nuro, TMJ ..ct scans, MRI's, and LOADS of medications...nothing has really changed it.
It used to burn like I had a sunburn but the acupuncture seemed to help that. The pain on a pain scale stays at 6-8 daily, it always like a big red blotch. With elevation changes I end up throwing up it hurts so bad for a a day sometimes two. Bending over puts pressure on it and kicks starts it.
All this we have paid for out of pocket...and are saving to go out of state to another jaw specialtist but I am getting tire of getting nothing for our life savings(and house...car....horse what ever else we could sell)
Have you ever ran accross this type of thing?
ANY wild idea of a test to ask for?
Thanks for reading

[Dr. Kokil Mathur]

Hi!

Primary immunodeficiencies can alter facial features and cause pain. The corticosteroids given for treatment of this PI too cause facial pain. It is a very tough situation to be in as the treatments are limited and aim at causing pain relief through pills, patches and pain pumps. Do discuss this with your niece’s doctor. Take care!