20 year itch

My journey with Eagles began in 1993 with a headache at the level of a 4 out of 10 on the pain scale. I went to my general practitioner and told him that I had this headache for the last 8 days and it had not gone away and that it reminded me of the same type of headache pain that I had when I had my bottom wisdom teeth extracted 4 years prior. He ordered X-rays of my maxillary sinuses and prescribed Motrin. A year later at 25 I became pregnant with my first, and only, child. My headache continued throughout the pregnancy and I had a very complicated pregnancy…extreme fatigue, gestational diabetes, a 35 hour labor with an emergency C-section. I ended up coding and they ended up shocking me to bring me back. After the delivery my every day headache level went from a 4 to a 6 to a 7. I began to seek a solution to my problem with a newborn and a rocky relationship with my daughter’s father.
So first comes neurology. I got the typical exam. Follow my finger. He pricked me with the safety pin, etc…He told me I had muscle tension, was under stress with a newborn and prescribed Indocin. I told him I had ringing in my ears. He said nothing can be done for tinnitus. I told him something snaps in my neck when I swallow. He prescribed Nexium. I told him my throat burns. He wrote a prescription for physical therapy.
So I go to physical therapy. I do the exercises and feel worse! They tell me ‘no pain, no gain.’ I remember asking them things like, “What if there’s something wrong with my bone structure? Wouldn’t it make doing exercises for my muscles pointless? Would this be what’s causing me more pain? Something wrong structurally?” I kept telling them that there was something at the base of my skull that was ‘catching’ and ‘snapping’. They whipped out the tens unit and would apply heat before pt sessions. At that point that’s when the neuro started me on tricyclics and anticonvulsants. CT scans were done - all normal. MRI’s - all normal. Yada yada! And by this time all the medications were driving me to the point of near insanity!!! So I did what I thought any rational person would do - I went back to my family doctor and said, “All right doc, we have to take another approach because obviously I’m getting nowhere here! I’m getting farther away from where I need to be because I’m feeling worse now than I did 5 years ago!” So he referred me to a different neurologist. (If I could go back and do it differently, this is where I would change it. RIGHT HERE!!!)
The new neurologist had the answer right away. I was having medication rebound headaches. He, of course, failed to hear me. I kept telling him, “HEADACHE.” As in “The pain never goes away, ever.” He said, “Well it’s because you take too much medication. Your body never has a chance to recover so now you are having rebound headache(s).” So then I explained to him that when I was 23 that out of nowhere my symptoms started without even taking any medications. I was a perfectly healthy human being and all of the sudden I had a dull, nagging headache accompanied by tinnitus, neck, shoulder and throat pain. So then I got the standard migraine diagnosis. He sent me on my merry way with Zomig pills and some other script for another nasal spray that I never filled. Defeated, knowing this was far from any solution, I never followed up with this doctor again.
So over the next few years I would have bouts of bad times and not so bad times. I joined the Army Reserve as a combat medic, worked in office management and tried my best to push through the day-to-day pain and fatigue and utter exhaustion I experienced. In the fall of 2006 I was called up to deploy to Afghanistan but received a deferral because I was living with and taking care of my father that was unfortunately at the end stages colon cancer. My pain levels were at an all time high from job pressures, taking care of my father, single parenthood and the physical demands of being an army reservist. In the winter of 2007 I was involved in a car accident that produced 4 separate impacts. 3 hits came from the rear and 1 from the front. The usual X-rays were taken at the ER and I was treated for whiplash.
It was at this point once again that I began to pursue the investigation to find the reason behind what was now my 15 year headache. The chiropractor I was seeing for treatment for my whiplash was following the ‘standard protocol’ for whiplash and his only suggestion for my headache problem was to refer me to a neurologist. I expressed my apprehension in going this route again as it has produced no solution for me in the past. He asked me if I had ever been tested for environmental allergies. Ding! Lightbulb! Something different! Yay!!! So I saw an allergist and reacted to everything under the sun and began immunotherapy. I saw an ENT and discovered that my septum was SEVERLY deviated. He felt that if I continued with the immunotherapy that within a year or two my headache would diminish and that correcting my septum wouldn’t improve my quality of life. I begged to differ, got a second opinion and found another ENT who would do the surgery. Within 2 months of healing my quality of life and oxygen intake had drastically changed and I couldn’t believe how differently life felt with the ability to breathe! The headache, however, was still there :frowning: I asked the ENT that operated on my septum if there was perhaps something wrong with my ears and my throat because I had complained to her of the tinnitus and the snapping in my throat when I swallowed. She did X-rays and CT scans of my sinuses and ‘found nothing wrong’ or ‘out of the ordinary’. I felt like I was SO CLOSE!!! There was NO WAY I was going to stop there. I wasn’t going to give up.
I was jogging one evening and was a couple miles into it and took a few deep cleansing breathes in through the nose (imagine being able to finally breathe in through the nose after 40 years!) and it sparked a yawn. My jaw made a loud, resounding snap. For years it has done this but for some reason I had really been ‘fully aware of it’ right then and there. When I was done running I googled ‘tmj and headache’. Then my mind took me back to something one of the army dentists had said to me back in 2006. He said, “Sergeant Nurrenbrock, has anyone ever told you your teeth are completely flat?” He then went through other lines of questioning about if I grind my teeth during the day or if I clench my teeth or if I use a night guard or if I knew what bruxism is, etc…
So I started putting things together little by little on my own. Forget about doctors and neurologists and insurance companies! I live in Columbus Ohio and am fortunate to have The Ohio State University medical system at my disposal. My gut instinct told me that my problem has something to do with my jaw, my neck, something structural. When I pushed on my throat right under my left jaw my pain level would go from a 9.5 to a 1 or a 3. I felt like something in my neck needed to be ‘fused’ or ‘lifted’ or ‘sawed’. Or…something! Something…wasn’t …right!!! So I went to a tmj doctor at my wits end and told him my symptoms. I said, "I have had a headache for 20 damn years. I have seen I don’t know how many doctors! I have taken so many drugs! I have tried so many methods of treatment! I have spent thousands of dollars. Driven hundreds of miles. Taken so many tests. Peed in so many cups. Have had so much faith, so little hope. I’m in so much pain. I’m so tired. I feel like there’s a wishbone in my neck that’s going to break in my neck every time I swallow. But it doesn’t break, it just fractures, it pokes me when I turn my head. Something is puncturing me when I try to sleep. I wake up tired, on empty. Help me."
He referred me to a doctor at OSU in their ENT department. Before the appointment I received a call from the office to determine what type of tests the voice and swallowing clinic should run. I told them my chief complaint was headache, tinnitus, my neck snaps when I swallow and that my ears click every time I swallow. When I went in for my appointment I was given a swallow study. They also did another test to determine vocal and laryngal damage. The day of my appointment I was diagnosed with Eagles Syndrome. The next day I had a CT scan. The car accident I had in '07 broke the tip of my hyoid bone, which was completely overlooked, my left styloid process is 6.5 cm and my right is just over 6 cm! How is it that both of these bones have been completely overlooked for the last 20 years???
Perhaps I’ll never know the answer to that question. My best bet is to just move forward and fix the problem and heal physically and spiritually from this point on. I’m scheduled for surgery on August 9th to have my hyoid repaired and my left styloid process completely removed from the external approach. When I’m strong enough Dr. Forrest will go in again externally and completely remove my right styloid process :slight_smile: Yayyyyyy!!!
It will be such a blessing to have some semblance of normalcy restored! It will be nice to lay down, sleep and wake up and actually feel rested when I wake up as opposed to waking up feeling as if I’ve just completed back to back triathlons!
Eagles Syndrome is no joke. It is a crippling, life-robbing disease, that when undiagnosed, plagues its victims like a cancer - making its way into every aspect of your being. Affecting every fabric of your way of life and how you relate to the world and your surroundings. Eagles Syndrome dictates what you do, how you do it, when you do it and how you feel.
My God, how I can’t wait to feel like I want to feel again :slight_smile: :sunny:

2 Likes

Wow! This is a great story. Your perseverance is admirable. Congratulations on your upcoming surgeries. Best wishes.

Dawn

Like Dawn said, Wow. My story is shorter, but yes, migraines, sore throats, burning, tinnitus and terrific pain in my throat above my jaw especially when I have an allergy, cold or infection. Had septum corrected, as well and night guard. Never had the neck snapping but finally found the bone in my throat. Always felt like I had a structural problem because I couldn't breath right. Still have some issues, glad they are doing the external surgery on you.

We will be praying for you.

I agree, WOW!!!! God Bless you for never giving up. 20 years is a long time to suffer with ES your story sounds all to familiar to many of us on this site. Sorry you had to suffer so long but brighter days are coming your way. So very happy for you. Wishing you a speedy recovery. Please keep us posted when you are able to. August 9th is just around the corner :-).

Hi AmyBlue. What a life medical adventure you have been through. I can relate to some of your scenarios but yours is much more complicated and longer it makes me sick that you had to wait 20 years for a diagnosis because obviously all those medical professionals did not have Eagles Syndrome in their book of diseases. I guess they needed to refer to the rare book of diseases also when the normal one doesn't fully explain symptoms. I hate their guesses and explanations for the common ailments and they treat us like lab rats to see the result. They expose us to unnecessary tests and treatment because it seems like no one really wants to listen to us. I agree, all the money spent for nothing. If they would have done the right CT Scan from the beginning you would not have been exposed to all that radiation. I know because of all the damn CT Scans I took, I feel like I can glow in the dark. I am so happy that you are finally going to have the problem taken care of. One week and three days out of intraoral right styloid surgery, I am beginning to feel better with some of my symptoms fading away. Hooray! I want the best for you and I will keep you in my prayers and thoughts that you come through your operation with flying colors and no complications and a super, speedy recovery with a lot less pain. The first four days of recovery are the worse but it will get better. Take care and God bless you and keep you safe!

With kind Regards,

Viperbone

Thanks for all the responses y’all! It has been a horrific journey :confused: I’m just glad it’s coming to its end :slight_smile: At one point about 3 years ago after a 4 day hospitalization and being pumped full of different types of drugs and minerals to rule out specific types of migraines and a spinal tap I said to a neurologist in the hospital, “Is it possible I could have Eagle’s or Ernest Syndrome?” She looked at me and giggled and said, “I think you’re a paramedic with an over active imagination.” I thought ‘what do you know b*#^~!’ I wonder if, when I’m healed, I should bother with a malpractice suit? Naw, I just want my life back :))))

Hi AmyBlue, I would send a letter with a part of your medical records diagnosing you with eagles syndrome and you telling her about your surgery to fix it. Also tell her to shove her arrogant, pompous opinion where the sun don't shine. They are not gods and they do make fatal mistakes and decisions on patients' lives. It would be good to show her how misplaced and wrong her attitude was when she refused to even consider or investigate the possibility of eagles. The problem with suing is that lawyers usually don't take cases like that on contingency and then you are talking about a lot of money maneuvering the legal system. After all, you don't want to go through years of hell waiting for an outcome. You have your life and family to consider. Heaven knows we need a pot of gold at the end of our rainbow medical adventure after what we have been through. Hang in there and be strong. Just get through your surgery and start to mend physically and mentally especially after your 20-year ordeal. Remember we are here for you if you have any questions or comments. Big hug of comfort to you!

With kind thoughts,

Viperbone

AmyBlue said:

Thanks for all the responses y'all! It has been a horrific journey :/ I'm just glad it's coming to its end :) At one point about 3 years ago after a 4 day hospitalization and being pumped full of different types of drugs and minerals to rule out specific types of migraines and a spinal tap I said to a neurologist in the hospital, "Is it possible I could have Eagle's or Ernest Syndrome?" She looked at me and giggled and said, "I think you're a paramedic with an over active imagination." I thought 'what do you know b*#^~!' I wonder if, when I'm healed, I should bother with a malpractice suit? Naw, I just want my life back :))))

Your story sounds simular to mine about the length of time. My headaches were not constant and my length of styloid not as long but mine have been bothering me mildly about 20 years and really bad about the last 3-4 years. Glad you are finally getting help.

I have surgery on the 15th of this month too.

Please keep us posted.

RB

Dearest AmyBlue!

What a terrible "journey" you've been through! Big hugs to you! I am only at the start of my journey and after finding a informed Specialist, I just had my first 'hurdle' too - my ossified styloids shows on the X-Ray but not on the contrast CT scan!

I don't know what I have to do next or what tests I have to get done to get to the actual treatment. All I know is that the pain is driving me totally insane - after more than two years or suffering I have had it.

You are right Eagles Syndrome is no joke. It is a crippling, life-robbing disease! With so little insight from the doctors in general it is also very frustrating!

Please keep us updated, you are in my prayers too.

Thank goodness you kept on asking! No one knows unless they have the syndrome how it feels.There are so many more people that have it and don't know it. Doctors just want to treat the symptoms and not necessarily fix the problem. It is so frustrating because you know that something is really wrong and they look at you like you have 2 heads. Good luck with your surgery, I hope you feel relief as soon as you wake up. Just remember they give you steroids and they make you feel great so don't do too much. Drink, drink drink to stay hydrated.

R.B.- Glad you’re getting your surgery on the 15th! Is the surgeon going through internally or externally? Is your case bilateral? I’m not sure what the usual wait time is in between surgeries to do the other side. Does anyone else know? I remember reading somewhere on the site last week that someone else was going in for surgery to have both of her styloids removed at the same time. My surgeon said he would not do them at the same time. (Maybe because I have to have my hyoid bone repaired also?) But my concern about the wait time in between surgeries involves a divorce and health insurance :confused: This ES diagnosis came at an awkward time!!!