Hi everyone! This is my story!

I am a 42 year old woman who suffered from GPN for about 4 years before being properly diagnosed with Eagle Syndrome (ES) in April 2010.

I started with zapping nerve pain going from the left side of my throat up my skull. In the begining it was just a couple times every few months. But, as time went on it became constant everyday for 8 weeks at a time. With some months of recovery in between.

I went to the ENT and had the tube down the throat and ct scans with no real reason for this happening. I then went to the Neurologist who prescribed me nerve meds that made me feel like I was going mad and did not take away the pain at all. So, I decided I would have to live with this pain and deal with it. And that is what I did for a couple years.

My life was absolutely miserable, the zapping would last for what seemed to be minutes non stop sometimes. I can remember pulling my car over because I thought I was going to never STOP zapping! I was so scared, I had to call my teenage Son to come get me. The only relief I could get was laying on the affected side completely flat. Which meant being in bed or on the couch all the time.

I could only eat pudding, jello, soup and hot coffee. I began to lose alot of weight. I am only 130 lbs as it is. I was in the ER at least 4 times for dehydration, which by the way is the worst thing in the world. Dizziness, headache, fatigue, halucinations, etc......Not a good place to be in my life for sure.

Anyway, I started researching again about this GPN and was on a forum where someone had suggested to me to be checked for ES. It did not dawn on me that I could have that. I was told GPN and that is what I believed was the issue. The Dr.'s know everything, don't they? LOL

As I read about ES I realized that I fit all of the criteria for this. Now, I needed a Dr. to believe me and order a simple xray to prove this. Well, that was not the easiest thing to accomplish. The ENT chuckled when I told him my theory of ES. But, he eventually appeased me after a hysterical breakdown and ordered the xr and mri.

I actually was given my mri on cd and was able to read it myself. I measured my stylus and sure enough it was long and curved unlike the way it should be. When it came time for my results with that Dr. he said you DONT have ES! I just burst into tears and said yes I do, check my stylus process length and width. He went one step further and called the radiologist who after a long conversation confirmed ES.

I was then sent to another ENT who had done this kind of surgery. He wanted to do external removal of the tip of the stylus. He said internal was tough and dangerous due to the fact that I still had my tonsils. So, off we go to surgery one week later. I am still zapping and losing weight rapidly. I really didnt care if I woke up at this point, not kidding!

I was supposed to be in the OR for 45 min. tops. Well, 4 hours later I am still in the OR. He went the external route all the way around my ear and could not locate the stylus bone! So, he decided to do a "crush puncture through the throat to break the tip off the stylus bone".

Those are his words! I woke in excruciating pain and my left side of my face was completely paralyzed. I was in so much emotional and physical pain, but with heavy pain shots that was taken care of. I went home the very next day. I did nothing but sleep for many days. I was slowly feeling physically better, but I had no hearing in the affected side ear and the paralysis was so devastating to me mentally. The zapping was GONE though.

It took me about 9 weeks to gain back my facial movement and it is completely back. The Dr. said he overstimulated the facial nerve, but he kept telling me your face will come back. i really did not believe him. I thought I would look like I had the worst stroke possible forever. Thank God I was wrong.

So, as of today I have no zapping whatsoever. It is 6 months since the surgery. But I live in fear each and everyday it will come back. I hope it does not, but I have read alot of peoples stories where it has. I can actually throw myself into a panic attack thinking about this. It is really hard for me to write this. I hope you get out of this, that you have to be your own detective and dont take NO for an answer. There is hope out there. Billie

I am so glad you recovered! But I feel the same way as you do! I have said my theories to doctors and one of them said to me well why didnt you let that doctor treat you then? you have to be persistent. they have no idea what it is like and there egos are a tad bit in the way sometimes. i am glad yours is resolved