Hello Everyone :)

Hi everybody! I’m new here to the GPN site. I’ve been on the sister site Eagle Syndrome since July of 2013. Eagles, I’ll try to keep it short and understandable, affects 4 to 5 of the cranial nerves on each side of the brain stem - the GPN being one of them. I’m about to go anatomy & physiology here y’all :wink: But if you can imagine a bare skull - in Eagles Syndrome, at the base of the skull just behind the hole where the ear is, there is a 1 1/2 to 2 centimeter ligament called the styloid process. Its main function is to help the tongue move in and out. (Nanny nanny boo boo!) Well, in ES, this ligament becomes agitated (usually from a tonsillectomy) and begins to elongate, or grow, usually downward, at a forward angle into the throat. In some people they grow on one side but usually they grow on both sides.

As you can tell this would create all sorts of problems!!! As these ligaments elongate they can press against the carotid arteries, jugular veins and cranial nerves. I can’t think of all of them off the top of my head but the GPN is one, the trigeminal, the facial nerve and the occipital is another. There’s one more but it’s eluding me at the moment grrrrr :confused: It can block blood supply to the brain, cause numbness in the extremities, neck and back pain, headaches, earaches, throat pain, ringing in the ears (tinnitus), shoulder pain, migraines, nausea, strokes, cluster headaches, depression, anxiety, vertigo, spinal stenosis, facial pain, jaw pain, tmj issues - just to name a few.

And the clincher is folks, after these itty bitty ligaments are done growing (in some people they’ve reached lengths up to 3 1/2 to 4 inches) - they calcify. That’s right. They turn into bones my friends. Sharp, jagged bones. Ouch :frowning:

Many Eagles patients are often diagnosed initially with GPN and treated as GPN patients successfully, for awhile. So as the styloids further elongate treatment begins to fail.

I am interested in learning more about GPN and lending support and getting support. I’ve had my left side operated on already in August of 2013 and it was a success! In the next month or month and a half I’ll be having surgery on my right ear for Superior/Semicircular Canal Dehiscence (another rare condition too lengthy to even get into!) That condition is worse on my right side than the Eagles so the doctors have decided to do the ear surgery first. Phew!!! But you know what? I’m a warrior. I am strong. I will make it through this. One day at a time. Because I realize that we can all do this together! That’s the beauty of this site and the people that belong here. We are here for each other. Participating in one another’s lives. Caring and sharing. That’s what it’s all about! (And you shake it all about!!!)

I look forward to getting to knowing all of you here :sunny:

Best wishes and healthy healing for us all,
Amy :slight_smile:

Welcome, Amy, we're glad to have you here!

Best wishes to you, Dancermom. I too am having surgery this next week. I am a bilateral GPN patient. I had an MVD last year on the left; so far all is good on that side. I also had bilateral TN; had MVD for both sides. TN is all but gone; get twinges once in awhile but they are like mosquito bites.

I wish you all the best, just believe you will be okay. These kinds of conditions are frightful.But for the most part, you can get through them with medical help.

Thanks, Temple, but I'm just a volunteer. Amy is the one having upcoming surgery. :)

OOPS! Well, best wishes, Amy.

Amy - you ARE a warrior! Bless your heart. You have a good mental outlook and that is half the battle. I had successful MVD surgery for GPN on my right side in mid-December. There was no GPN pain the next day and I was off every single drug. Each day since then has been a little better and after only 2 months I am almost 100%.
Hang in there knowing that relief is coming!
Best wishes - caroline

Thank you Caroline, Temple and Dancermom for your kind words!!! They truly mean the world :)

Temple - Have you had your surgery yet? Please keep us posted on your progress. And you're right, believing and having faith that we will be okay is the key!!! And your success in the past is living proof. I'll be including you in my daily prayers <3

Thank you for the good thoughts. I had had surgery last Thursday. I have set some kind of record which of course I did not want. This last surgery was quite nvolved as I had vein an one artery win around the glossary heal nerve , one vein that had actually grew into the nerve, and one other vein that was sitting right on top of all of that. I have set a record which I did not want. I will be fine and am making good progress. hope to be released Monday.

Best wishes for your recovery, temple! Thanks for updating us.

Thanks for checking in:) Keep up the good fight! Sounds like you’re doing great and overcoming mighty challenges. Continued prayers are being sent your way :slight_smile:
Much peace and energy,