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Living With Facial Pain

GPN Update 2018


#1

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.


Oral Lichen Planus aka Lichenoid Reaction
#2

**Oh my gosh, I’m so sorry! I wish I could offer you more than that. **


#3

Completely random idea for you, Herb – have you been checked for Eagles Syndrome?

Eagle Syndrome is a rare condition where an elongated temporal styloid process (more than 30mm) is in conflict with the adjacent anatomical structures. You mention swelling and lumps and so on which many people who have Eagles suffer through periodically (if not constantly).

Ben’s Friends actually has a community for it: https://www.livingwitheagle.org/

Obviously I’m not a medical professional but since Eagle’s is also a rare issue and some of your symptoms overlap it might be worth doing some research on it yourself. It’s not very well known at all…

azurelle


#4

Hi Herb, just read your post. Felt for you enormously!!
I just read an old diary that popped out of the cupboard when I was looking for a photo. It was just like your post. The lumps in the throat. Swelling. The gland. All were the same for me. Nothing showed on scans. The terrible tast in my mouth. Like reading a familiar nightmare.
I do hope something can be done for you.
Go easy on yourself. I had section of Gpn 23 years ago. Not a great success, but hang in there. It changes over time. Sometimes a long time. Every case is different. Just moral support, no helpful info. Regards WW


#5

Thanks Azuelle

Yes I have been checked for Eagles.


#6

Herb,I have no words—— just prayers for some relief and a solution. As fo the pain, I know that. Prayers for a speedy diagnosis and some meaningful help. Gloria


#7

WW

Have you ever been diagnosed with lichen planus or lichenoid reaction?


#8

No Herb, I haven’t! Just had my Occipital Nerve block today. That helps a little with all the scull and neck pain for a few weeks. So very grateful to have these. Regards WW