Somethings not right!

In November 2008 my Husband & I were in the kitchen he was making jokes as usual. I threw my head back while laughing & felt a really sharp pain behind where my tonsils were, that was the first time I felt that pain on the left side of my neck. The pain was deep inside my neck, I had never felt it before but I knew something wasn't right. So I waited a couple weeks to see if the pain was going to go away. At this point I was thinking that I had actually broken something in my neck. The pain was always there, every day, all day long but I was able to still function okay. By Feb 2009, I decided to go see a Doctor, but what kind of Doctor should I see!? East, Nose & Throat (ENT) sounded like a good start considering it was between my ear and throat. I made my appointment at Midwest ENT; at my appointment I went on to explain what was going on. The Doctor did a scope where he went down into my throat by inserting a camera into my nose. It was a bit uncomfortable but not bad. All he told me was that my sinuses were a bit red but couldn't see anything wrong at this point, he referred me to another ENT. I went to the appointment for ENT #2 did a CAT scan Doctor thinks that I need my Tonsils out. Oh man I really didn't want to go thru that at the age of 30. I never even had sore throats or anything, aside from the ONE pain that was in my throat. I trusted that he was a "Specialist" and that he knew what he was talking about! So I planned my surgery to remove my Tonsils. In January 2010 I had my Tonsils out, it was the Worst Thing EVER! Had I known what I was going to go through I would have rather had 10 more children before I had my tonsils removed! About 6 weeks into healing I felt THAT feeling again. Right away I was like "OH NO!" I was Upset! I went thou so much just to be right back where I started! The pain was there again and I was devastated! It took about 4 months to heal from that. I was just ready to give up and live with it but every time I would turn my head, laugh, sneeze, cough, YAWN ect.. I was reminded of that pain that always stopped me in my tracks.

Push ahead to Jan 2012, I had a cavity & needed to go to the Dentist. I had been putting it off and knew I needed to get it taken care of. Sitting in the chair I look over at the wall and see a poster labeled SALIVARY STONES with a huge picture of the stone and it was right were my pain was!! OMGOSH there's my answer, I have salivary stones, I diagnosed myself I thought!! After getting my filling I point out the poster to the Dentist and want to get information on these stones. Dentist says that I need to make an appointment with an Oral Surgeon. So I got my referral and got an appointment at Maple Shade Dentistry. I had a panorama xray done of my whole head and told him that I thought it was Salivary stones. After 3 appointments here the Dentist was trying to tell me that I needed a mouth guard at night, possible dental work and also that he seen no obstruction in my glands. Might I add I have pretty good teeth, never had braces or anything. I decided to get a second opinion (as far as an Oral Surgeon goes) and called Associated Oral & Maxillofacial Surgeons of Peoria. Walking into this place I was nervous, I remember praying and asking God to please help me to get some answers, after so many Doctors I was so discouraged walking away empty handed. At my appointment they read my scans the Doctor was young but seemed like a smart man. He felt bad when he told me he didn't know what it was, I could tell that he was upset & that he knew I was upset. Here I was, leaving again, with no answers. This time all I could do was cry, it was upsetting! I give up, no more doctors!

2 weeks later Associated Oral & Maxillofacial Surgeons called me back, they wanted me to come back in cause the Doctor wanted to talk to me some more. I was really debating on even going back just cause I felt that they just wanted to waste my money by having me go in there again for nothing. But, I decided to go. When I went to my appointment Doctor said that he noticed something on the x-rays. So he showed me my pictures and brought up Eagles Syndrome. He had never personally dealt with Eagles Syndrome but his colleague Dr. Michael Miloro had. He is the Professor of Oral and Maxillofacial Surgery at the UIC College of Dentistry and he is a very smart man! http://dentistry.uic.edu/departments/omfs/faculty/mmiloro/ I was like "oh wow, am I really going to drive to Chicago, Illinois to see this Doctor!?" yep...I sure was, didn't even hesitate.

November 2013 There I was at the UIC in Chicago, waiting to see the Doctor. Two "Doctors" had come to see me before I had even seen Dr. Miloro. When he came in I felt a sense of peace, yet scared at the same time. He KNEW what he was talking about and told me that he looked at the Xrays and that I had Eagles Syndrome. He was very surprised that I had It being only 33 years old and dealt with it for 6 years. He was confidant that he would be able to go in internally and remove the Styloid Process. I had a whole list of questions I asked him cause if at all possible I'd like to avoid it happening again. He answered all of my questions and had done the surgery quite a few times, so that made me feel more comfortable. Now we wait for the Insurance approval!

It took 6 months to get my insurance approval but I was approved, Thanks God! I got a weeks notice and Surgery was set for June 13, 2014! I was so scared to have the surgery the thought of him cutting into my neck was scary, I thought I would end up with a speech impediment or my carotid artery was going to get sliced, paralysis of my face, nerve damage ect....I almost backed out and I was sick all week stressing about it!! I had to keep talking myself into getting the surgery done. I told myself "Look how bad its gotten in 6 years, I cant do this another 6 years!" The day of my surgery God gave me peace, I just needed to give him all my stresses and trust that he was going to take care of me, and he did!

The first 3 days were rough but not nearly as bad as when I got my tonsils out (for no reason). The Healing was not bad at all It was a SUCESSFUL SURGERY!! AMEN!!

The symptoms that I have now 8 weeks later are very minimal: I can only open my mouth about an inch. Slight tingle in my tongue (cause that nerve was in the way, he moved it over) Surgery was on my left side by the way. Also my gums feel weird when I floss but only at that time & on the left side. Still have a little swelling in my cheek and neck (where it was) & tenderness in area where it was. The stitches were below my teeth on the left side bottom part of my cheek.

That's it! I believe my problems are over! I will keep you all updated on anything else! Thank you for reading my blog & I hope it can be a help to you!!!

sadly , your story sounds like most of us,,,

numerous doctors over several years with no relief. (my symptoms started jan 7, 1999 when my squad car was rear ended in an ice storm)

I stumbled on the styloids because I was reaching for anything and asked my local doc to give me a brain scan to see if maybe I had a tumor up there causing my headaches and blackouts etc. we had checked for everything else. the scan came back with elongated styloids (about 7 cm each) even with that, it took another 18 months to track down someone that could deal with them.

most of us have been diagnosed with everything under the sun. when they cant figure it out, they label it as fibromyalgia and or depression. then throw lots of meds at it. but nothing helps until we finally accidentally stumble into the real cause of the problem...

this site was a big help in getting me info and hooking me up with dr cognetti at Jefferson hospital in philly.

he went in for the right side on may 31, 2013 and the left was july 8, 2013.

still have some numbness above the scar on the left side but almost everything else is great.

I had the poking, choking with the right side, constant pounding headache on the left.

most of the headache and other symptoms were caused from the styloids pinching off the juggler on both sides and rubbing the nerves.

I am so glad I found doctor c and his team.

glad you found your doc and are doing better. the leftover problems in your face should go away with time.

scar tissue will be stiff and sore for a while but it is better than suffering with the problem and the helpless feeling of not knowing what it is and what to do about it

JCW

I am so glad you are feeling relief! Please keep us posted on your healing progress. My thoughts are with you.

So pleased that everything has gone well with the surgery, but what a journeyit was!

Unfortunatelly, not uncomon.

All the best and the only way is up!

Thanks everyone! It had been quite a journey for sure! I feel so bad for people on here who are just starting theirs. But at least everyone here has found a place to start. I can’t wait till my mouth opens all the way so I can yawn and know for sure that the pain is gone!

not sure on what procedure your doc used, thought there were only 2 commonly used, inside rear of mouth, similar to tonsils and exterior through the neck. sounded like your doc used some other approach.

my doc went in through the neck/throat on each side of the adams apple. he put the scar right in the folds and they are barely visible after the first year, (less visible the more time passes)

My goodness Trooper Dude, I thought my 4cm was alot, I can’t even fathom having 7cm! Praise God that you found your Doctor, I am also soooo happy that I found Dr. Miloro in Chicago him & his team were so Wonderful! What he did was an Internal Styloidectomy, which is similar to the Tonsil removal. Congrats on your successful surgeries!

so how is the jaw this week,, still stiff?

have you tried hot or cold packs.

I had an ice pad that was hooked up to an igloo cooler, the cooler had a water pump. fill the cooler up with ice and water, plug up the hoses on the pad and turn the pump on, it circulated ice water through the pad. that thing is the bomb. the cold would flow for a minute or so, then stop so the skin could warm up then pump again. the change from ice to warm is supposed to make the blood flow increase in the area . it worked great, the incision in my neck was completely sealed up at day 5, not even a scab... the other thing that was recommended was eat lots of jello and bump up the vitamin C. not sure which helped or if it was the combination but even the doc was surprised when he pulled the bandage off at day 5, and day 3 on the second side. I have never seen anything heal up as fast as this did.

on another note

looking through the profiles of everyone on here,

thinking we need to get an Illinois chapter of eagles patients going.

lots of us in Illinois.

when I was diagnosed, my doctor did not have a clue about eagles, had not even heard of it,

since we have my case worked out, doc has found 3 more in my area.

I guess he has learned enough to start looking for it in some of his patients that have had similar problems that could not be explained with anything else.

maybe something good has come out of my 14 year journey....

Jaw is still stiff, only opening an inch still but working on it everyday and I still have a lil bit of swelling in my cheek too. I have stopped using the cold/hot packs but maybe will try again, mornings are harder. But my discomfort is very minimal to some stories. I’m so happy to hear about your healing, st it so wonderful that the body can heal!! Amen!! Hey I’m all about talking to more people about ES. I think your my only Illinois friend.