Newbie Just trying to find answers

General
1

I have been sick and in a lot of pain for the last 3 years. I have been to numerous doctors and ruled out about everything. I have hit a road block and I was not so sure what I should do when I came across an article that seemed similar to me and it led me to this website. Since I am not diagnosed I am not sure if I have eagle syndrome but the more I read the more it makes sense. Right now I am in the process of seeing how I can get checked out for this and see if it is an option. I figured I would share my story and if anyone has any input I would love to hear it.

4 years ago I had a bad concussion, I came up from bending over and jammed the top of my head into an oak banister. It took me awhile to recover from post concussion symptoms. I had injured my neck in a bad whiplash years ago so jamming my neck didn’t feel so good. About 6 months later I started to notice I had some problems with swallowing. It seemed hard to swallow and at times eating made me feel tired in the throat. I also noticed my voice was having issues. It got tired easily. I started having pain when speaking a lot. I am also a singer and I noticed singing made my throat hurt.( I am professionally trained so it was not that I was singing wrong) I went to an ENT got my vocal chords checked out and they said they were fine and told me I probably had muscle tension dysphonia and sent me to a speech pathologist. I worked with him and it helped a little but I still was in pain. I then developed pain in my right shoulder and started having issues there. Along with this I have had lots of fatigue. I have gone to many doctors, ruled out the common stuff, thyroid, acid reflux, bulging disc, lupus and much more. I have tried. Chiropractors, massage, myofascial release, yoga, massage, meditation. The only thing that brings some relief is the myofascial and yoga but it is temporary and only takes the edge off. It basically keeps me from having to be on heavy pain meds.

As I read about Eagle Syndrome it is like it put into words what I had been feeling.
Here are a list of main symptoms

  1. Throat pain, sometimes feels like sore throat, sometimes achy. It almost feels like my back neck bones are poking into my throat. Feels like nerve pain in behind the tonsil area. It is made worse by talking for long periods of time. Singing and often eating. Singing causes the worst pain.
  2. Throat is bigger than normal, swollen looking all the way around
  3. Neck pain, cannot do simple neck stretches as they hurt my neck. Have a hard time sleeping due to pain. If I stand too long neck pain. If I sit too long neck pain.
  4. Nerve pain. I have nerve pain in my tounge and ears. It is usually a sharp pain that come for a few seconds than leaves. I also have nerve pain up the back of my head.
  5. Eye pain in one eye. It feels like it is behind the eye
  6. Shoulder pain- shoulder has been checked out and is fine but hurts around shoulder blade.
  7. Breathing issues. It feels like it is hard to get air in and out- had a full lung work up and everything is fine, no asthma. Also it is not due to anxiety. I first noticed it when singing and couldn’t get the right breath to support myself.

These are the main issues. If this sounds like eagle syndrome let me know. Does anyone have any advice on how to get a dr that will listen and test me for it. I got a neck Ct and MRI years ago, so I probably could just have someone who knew what they were doing read the scans.

2

Hi Agirl!
There’s lots of info all about common ES symptoms and what can cause them in the Newbies Guide section, so you’ll find you’re not alone, and all the symptoms you describe can be caused by ES. There’s also info about the best scans to get diagnosed there too, but basically the best scan to show the styloid processes is a CT scan. It might be possible for this to be looked at again and re-evaluated for ES. As it’s quite rare, it’s not something that is often looked for in a CT. It’s good though that you’ve had the other tests done though, as this can rule out alot of other conditions.
We also have a list of doctors familiar with ES in the Doctors Info section, but the link doesn’t seem to be working at the moment, so we’re trying to get it fixed. I think the only doctor on the list in Tennesse is Dr Mark Williams, Southern Hills, Nashville (615-832-2200), and sometimes members find that they have to travel a way to find a doctor they feel comfortable with. If you want any more names I’ll have a look on the list I have for you.
To get a doctor to listen, we suggest that you get copies of info which shows your symptoms are common with ES- there’s info about research studies where these are mentioned in the Newbies Guide also- and take this with you to show your doctor, and hopefully they’ll listen!
ES can also affect the voice because of irritated nerves, it’s interesting that you’re a singer- we’ve had quite a few singers on here who’ve found ES have made singing difficult, so you’re not alone!
I hope that you can get some help, and hope the info is useful! Best wishes…

3

Also…you could just pay out of pocket for a panoramic xray at dentist as I think they are quite good at picking this up. My past ct ad MRI did not pick it up.

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Thanks so much for the info. I will be looking into all this.

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The injuries you’ve had to your neck & head have been associated w/ ES occurrence later in life. I had both whiplash & head/neck injuries when I was younger (teen/early 20s) & my ES showed up in my late 50s. That is not to say there is absolutely a correlation, just that it’s a possibility.

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Your symptoms are almost the same as mine except for the eye pain. I have the same feeling that the bones of the back neck will come out trough my pharynx. If I lay down too much I have pains, if I stand up too much I have pain.
Unilateral pain in the cervical region , shoulder , clavicle and deltoid muscle
My symptomps started 2 yrs ago
Do you have inflammatory lymph nodes?

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Yes I have had swollen lymph nodes since all this started.