I have caused 9 ENT’S & 1 neurosurgeon to throw up their hands & say they don’t know what is wrong with me. 4 neuro’s agreed I had classic GPN symptoms with a few symptoms that didn’t fit. I had gamma knife & nerve resection with MVD by the same neurosurgeon. The neurosurgeon is adamant that he severed the whole GP nerve with the surgery. Neither procedure succeeded in relieving my pain. My symptoms have changed over the course of 5 years. I think I now have TN on both sides thrown in the mix.
Current symptoms:
Classic GPN; under jawbone, front to ear; ear down neck to just below the Adams apple; it has always been a sharp knife like pain not a tingle or shock
My parotid glands & either one or both sublingual glands & sub mandibular glands have always been enlarged most prevalent on the right side from the onset. I have developed a "lump" right below my Adams apple that is extremely painful & changes size in relation to pain. I also have a lump on the back of my neck below the ear.
The pain from that lump extends up the back of my neck to the back of my ear. The lump increases in size with relation to pain. Here is the kicker, the pain changes sides exactly from ride side to left side including the lump under my Adams apple. The lumps & pain occasionally appear on both sides at once. The pain changes in intensity despite which side it is on. Chewing, swallowing, or coughing appears to trigger the pain & “swelling”. The saliva gland pain does not change sides. The right parotid gland pain is constant but changes in intensity as does its size. I cannot lay the right side of my face on a pillow. The weight of my head on the pillow increases the pain.
The reason I think I might have TN is my face tingles, but not constantly.
The docs & radiologist swear they don’t see these enlarged glands & lumps on imaging. I have had more imaging than I care to count. CT, MRI, & ultrasound.