Just wanted to put out an update in the hopes it will help some of you. Finally made it to the neurologist after multiple doctors called me a mystery. She says that I have "glossopheryngiel neurolgia" cn 9-10. Wants me to take a nerve pill for 2 YEARS in the hopes it will go away! Says that it is preceeded by shingles, which I had a VERY mild case on the left side of my head. Ironically, my elongated styloid is on the left side as well. She would not even consider Eagles, wouldn't even look at my picture that I brought her!!! She told me to research "GPN" I did. Nothing I came across said that shingles preceeded or had anything to do with GPN. However, almost all studies said that it was unknown as to the cause. But that it was best to have scans, exray, etc. to determine if there was a compression or tumor around the brain or base of skull.......as in "EAGLE Syndrome." I have lost 50 lbs.( which I needed to do) because when I eat, my body goes haywire because of food or drink touching the back of my throat! When I figure out how, I will post my cts for you guys! Have a great Day!
We have a GPN community, just in case you want to check it out, lizajane: http://www.livingwithgpn.org/
Here's hoping someone can unravel the mystery and get you some relief!
Eagles can definitly cause GN. Mine went away after my surgery.
Strange that just about everyone in this group with ES also has GPN, but that CAN"T POSSIBLY be wha't causing it! What happened to if it looks like a duck and sounds like a duck...
My GPN is almost gone too after my ES surgery. Well neurologists said it was atypical GPN and treated me with Gabapentin. My ENT recognized these GPN symptoms as a sign of ES. He said that the glossopharyngeal nerve is the most likely to be affected by the elongated styloid processes. And my surgeon said the same thing on surgery follow up last month. As It turned out they are right and I no longer need to be on medication.
I'm very glad to hear that treating the ES took away the GPN symptoms for some of you. Thanks for the information!
Lizajane:
With all due respect to neurologists across the country- the 4 that I had dealings with before I was diagnosed with Eagles by an ENT wanted to put me on drug after drug after drug. They knew nothing of Eagles or what was causing the source of my headache, fatigue, joint pain and neuropathy. After extensive research on my part I even suggested Eagles in 2009 to a neurologist and he told me I was "a paramedic with an overactive imagination." Frankly I don't even think he knew what Eagles Syndrome was! And from most of the member's experiences on this site, neurologists just don't cut it. ENT's do the majority of the diagnosing and the surgeries.
Just a suggestion. I'm glad I pursued other alternatives and kept pressing on. Otherwise, I'd still be taking Gabapentin and Lorazepam and be drooling all over myself :( My styloids were 2 1/2 to 3" long! The left one is gone and the right one will be out in a few months. I owed it to myself to be as proactive as I could because I knew deep down something was wrong. And lizajane, you're worth it too! I can't wait to see your CT's :) You have so much living to do! Your body is going haywire and the shingles is a sign from your body giving you warning that something isn't right.
We're here for you in every way. The GPN may go away but an elongated styloid process never will on its own :( Let's find a solution =)
Thanks so much!
AmyBlue said:
Lizajane:
With all due respect to neurologists across the country- the 4 that I had dealings with before I was diagnosed with Eagles by an ENT wanted to put me on drug after drug after drug. They knew nothing of Eagles or what was causing the source of my headache, fatigue, joint pain and neuropathy. After extensive research on my part I even suggested Eagles in 2009 to a neurologist and he told me I was “a paramedic with an overactive imagination.” Frankly I don’t even think he knew what Eagles Syndrome was! And from most of the member’s experiences on this site, neurologists just don’t cut it. ENT’s do the majority of the diagnosing and the surgeries.
Just a suggestion. I’m glad I pursued other alternatives and kept pressing on. Otherwise, I’d still be taking Gabapentin and Lorazepam and be drooling all over myself
My styloids were 2 1/2 to 3" long! The left one is gone and the right one will be out in a few months. I owed it to myself to be as proactive as I could because I knew deep down something was wrong. And lizajane, you’re worth it too! I can’t wait to see your CT’s
You have so much living to do! Your body is going haywire and the shingles is a sign from your body giving you warning that something isn’t right.
We’re here for you in every way. The GPN may go away but an elongated styloid process never will on its own
To everyone on this discussion- what kind of throat pain do you have? I was told GPN for my son but then one doctor said GPN is only throat pain in the back of the throat. My son has pain in the front of the throat. ???
Ear Mom, my throat pain is a stabbing pain similar to popcorn husk scratching it constantly in the same place. Also, a burning soreness like a sinus drainage problem. In the Fall, I began having a burning hot sensation down the side of my throat at an angle,under ear side towards the front of throat. It would just burn inside and then within 5 minutes of that sensation, my neck would actually turn red. I took pictures and showed them to my doctors, that’s when the neuro doctor said GPN. I would offer you a picture but I just crashed my phone into the pool the other day. ;( I use an ice pack on the side of my throat when it gets too out of control. Sitting at a 90 degree angle and laying down bring my symptoms on worse than anything. Certain drinks and food irritate as well. Hope this helps you and your son 
Lizajane - My son uses the adjectives "sandpaper and stabbing" to describe pain in his throat. You are the first one who used a "scratching" adjective too. I just pray the styloidectomy does the trick. I will try ice on him and see if that helps. He is in dire straits as we wait for a surgery date. I makes me feel like we are making the right decision when I hear that some of you have similar symptoms. No doctor will agree that this is indeed Eagles syndrome because no children have it.
I also the shingles on the left side of my head and I just wen to the Cleveland Clinic yesterday with my 3d CT scan and the doc came in the room after looking at my scan and said lets talk options including surgery. So finally after 15 years of this he is scheduling me for surgery.
You need to see the right doc for eagles apparently. I was going to see one around here in northern Ky but family doc said to go to Cleveland and after talking with the doctor and going over my scan I have bad case of eagles and he never even questioned whether or not I have it.
Bless your heart!! I hope you can get some relief soon. We are very fortunate to have this website as information is limited in other places. I ran around for several months looking in the back of my throat with a flashlight and any family memeber that passed by, I would look in their throat as well. I was just hoping to see Something to account for what I was feeling! Hope you're better soon!
I agree with all of the above. I have been seen and put on so many treatments and muscle relaxers, botox and all because this is so rare . Im done and glad to be seeing a real ES specialist in U of K August 14th. Its been four years. I can make it until them but jumping for joy that this will soon be over. Praying for you all
And we are praying for you all too...we are currently waiting for a surgical date. We have been waiting for over a week now. Hoping everyday to get that call...so my son can start his journey of healing!