Finally Diagnosed after 2 1/2 years

Today February 7th 2017 I was finally able to get a diagnosis.

My Backstory-
6 years ago I would wake up in the morning with extreme left ear pain, like an ice pick was being plunged into my eardrum. That went on for about 1 year on and off. The pain would quickly subside after getting out of bed and doing normal duties.
All seemed well for several years, until August of 2014, I had an ATV accident and landed on my face (facial scrapes, sore muscles, and the wind being knocked out of me). Within the same day of the accident, I had extreme pain upon each swallow in the left side of my throat. Upon seeing my primary care physician over the symptoms, he ordered x-rays which turned up negative. After repeated doctor visits I was finally able to receive a CT scan of my cervical spine (without contrast), came back negative. Discouraged I obtained a digital copy of my CT, took it home, downloaded a program that would convert the format into 3D structures of my bones, that’s when I saw what was causing my pain, a 3.5cm long elongated styloid process that looked to be pressing against my throat among other things. I continued on to be referred to an ENT who looked down my throat only to tell me that I must have sprain a muscle or tendon. Over time I saw various doctors, chiropractors, & dentists only to be told that they had never heard of Eagles Syndrome.

Over the length of 10 months after the accident did the swallowing pain subside. I continued on through the pain with everyday activities, (very rarely taking pain medication) might I ad I am a father of 2 children and a husband of a nurse. I powered through each day, rarely showing pain or complaining to anyone. I logged many hours in my free time searching through nerve functioning of each vertebra muscle and ligament formations that could possibly be the cause, I guess one could say I became a closet neurologist/otolaryngologist, my OCD surfaced over this whole ordeal big time.

I guess I can consider myself to be one of the lucky ones! Periodically I may get pain in my throat (5% of the time of about a 4 on a pain scale), I still get pain in my ear (10% of the time but it is usually not over a 3). Although I have a globus sensation under my left tonsilar fossa (90% of the time without pain). I may add that a cold or allergies tend to ramp up my symptoms due to inflammation & irritations.

It wasn’t until 3 weeks ago that I decided to proceed with my continued journey for answers. I already knew what I had going on with my throat within a month of my accident (hence my ocd studying capacy) but I needed to hear those words come out of the mouth of a “professional” wearing a badge.

I am here to say, that I have fought this fight internally for years, as a result, I know for a fact that it has made me a better person, husband, father, brother and friend along this journey.

As of this day, Tuesday February 7th 2017 I set out to find an answer, I prayed to my Lord Jesus Christ to guide me, the hands that hold, and those who have helped me help myself along the way. Somehow I knew today would be the day that light would shine. Today, I got to hear those words roll that doctors tongue…

The doctor looked through my CT scans from 2 years before. He turned and looked at me, with shock bearing in my spine he said - “huh, you have eagles syndrome, a hardening or calcification of the stylohoid ligament!”

With tears in my eyes I shook his hand and thanked him.

I feel relieved just knowing that I now have a concrete base to stand on.

Thank you all for your support.

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WHOOPEE!! God is good! I was very blessed to get a quick diagnosis for my ES. My styloid processes were actually elongated & my s-h ligaments were only partially calcified. Have had it all removed as my pain was intolerable & my heart & blood pressure were being effected. Clearly you’re very thankfuol to have a diagnosis & not have pain bad enough that you’re seeking surgery. Hopefully things will stay that way for you!

Thank you for sharing your story! It’s a true testimony to perseverence both w/ God & the medical profession.

Good news that you’ve been proved right, and well done for finding out as much as you could and for not giving up! Any ideas what you’ll do next- are you thinking about having surgery?

Welcome to the group. Also, good job listening to yourself about knowing that it was something more. Let us know if we can help you with your next steps.

Surprisingly the diagnosing doctor asked me if I wanted to go ahead and schedule the surgery. I told him that I’d have to weigh my options with my wife and most importantly with myself (as I am the primary income provider for my family). The doctor told me if and when I wanted to go ahead and have the surgery just call back at anytime.

I asked him if he has ever diagnosed ES or performed the surgery but he said “nope, you are the first person I’ve ever seen with it, I vaguely remember scanning over a page about it in med school”

Well, I say kudos to the doctor for even remembering the page he scanned over in med school. I think most docs, if they learned anything about it forgot because it’s so rare so they don’t even think to look for it. He could always consult w/ Dr. Samji in CA about how to do surgery. If he’s a skilled surgeon, a discussion w/ a doctor who’s done many ES surgeries could give him the guidance he needs to perform your surgery more successfully.

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I’m so happy that you hit diagnosed, but even more so impressed that you took the initiative and downloaded software to do this with you own ct scans. My local hospitals don’t have the facilities to do 3D from the scans (I called around) and I have no idea where to get it done. Perhaps I will try myself. Do you recall the name and was it very hard to do? Thanks and good luck with everything going forward.

I’m not very good with tech stuff, and my scans were from a different angle to the ones members have posted on here, so I’ve not tried this, but here’s a link to the info posted on here:

Thanks Jules,

Although I found a different 3D imaging program and I was able to render a 3D image from a CT of my spine (without contrast). I forget the exact name of the program but I can provide the name and a few steps I used.

I used the program that Jules listed above and I printed the directions provided from Our Member and followed them and with a little trial and error I made my 3D CT pictures…search this site for “seamom CT Scans”

I tried to use the program but failed miserably. Probably my fault. However, good news is after speaking to their radiologist at the BMI Clementine Hopsital in Harrow, they will do the 3D conversion from the original CT Scans the did there, and will post me the CD within a week. Fingers crossed as that will confirm the diagnosis once and for all opening up treatment or surgery options…

Hope so then, let us know how you get on!

Not Great news. Weird in fact. BMI could not burn the 3D images on a CD so I haven’t seen them (they said technical issues they can’t figure out), but sent them through to Mr Cordbridge through their internal IEP system, and Mr corbridge secretary called me and said he had a quick look and he sees no elongated styloids on the 3D images he saw. I’m lost now, because in my CT scans the radiologers report says Enlongated Bilateral calcified styloids in the original CT disc/images,. Also two ENt drs who looked at original CT disc said they seem to be enlogated but they are not so clear. I’m lost now, I’m concerned the 3D images they have done are not done right, or because CT was a little unclear in some images the 3D was not picked up, or the ones set to Mr Corbridge might not even be mine, as how could this be. My symptoms are there, and ct apparently shows bilateral (so BoTH sides) elongation but not even one side shows in the 3D? I’m going to fight to get those 3D images myself that they claimed to have done, as who knows what’s going on here. It’s set me back big time now. Depressed as anything at the moment. The hospital are saying they are waiting for their IT Support to help them burn a cd of the 3D images for me as they can do it… sigh…

That is so frustrating… hope you can get a copy to check that they have done the right ones. Did Mr Corbridge ask for the 3D pics, or did you get them sent? I does sound weird, unless Mr Corbridge is using a longer ‘average’ styloid measurement to compare them to? It’s not just the length but the angle of the styloid processes which makes a difference too.
Keep fighting, it’s all you can do… (SP’s can sometimes show up in x-rays; have you ever had an x-ray done of your neck?)

I’d continue to fight for the 3D version. It sounds to me like it may have not been completed yet. Using hindsight, I’d like to say the program I used was called (intellus 3d imaging) or something along those lines. I found it online and to my surprise it was free, although the program itself was pretty big and took a lot of storage space, I found it very useful.

^^^ scratch that

I found the program I used. RadiAnt DICOM
http://m.radiantviewer.com

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Thank you both for kind words. I took matters into my own hands. But oh my word. Southern Rancher thank you thank you. I dedicated my evening to my pain, downloaded and the new version of the software is amazing. Its so easy to do some 3d stuff with it. This version now has a simple 3d button (once you load your directory) and you can use the right mouse button to zoom in and left mouse to twirl it all around. looking closely seems they are not that elongated but i think they are extremely thick. one being longer and one thicker. I “think” im looking at the styloids here. Anyway, would really appreciate someone having a quick look and see what they think before I send on to another Dr. Uploaded one pic from the back and one from each side to keep it simple. Any comments appreciated. Im sure lots of people here looked at so many ct scans any info will help.

You’re looking at the styloids. It looks to me like your thicker styloid is also your longer one. It does look thick compared to others I’ve seen. Also, it looks like they sit at different angles. As Jules often says, “We are not doctors” so any opinion we give won’t be medically valid. The thickness of the one styloid could be causing you pain as the larger diameter of bone might be pressing on nerves. On which side do you feel the most pain or symptoms?

Awesome!! Kingdoz, what happens when you tilt your head toward the right? Im no doctor nor do i have any professional say so but it looks to me like your atlas (C1 of your spine) could be out of alignment. Also looks to me like you should ask your doctor about the closeness of the “right wing of your C1” in relation to your skull base and it’s positioning.

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Hi. So found my styloids after all :slight_smile:

I get far more and constant pain as well as constant inflammation on the left side. Right comes and goes… when i tilt to the right i get ear pressure on left, and some vertigo,and a pressing pain on my right, but to be honest nothing feels normal anymore. Tilting any side causes unwanted pain usually on the other side.

Yes I see about the C1, will ask about that as you never know. This whole thing may not be my styloids after all but they still seem certainly thicker then others ive seen :slight_smile: I appreciate your help guys. Definitely will now show a dr.

In the meantime I uploaded a couple of others from another batch of scans for good measure as they look quite different :slight_smile: