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Eagle Syndrome - Online Support Group

From Periodontist to ENT within a month

Hiya all.

When I went in for some dental work it looked pretty routine. Just get a deep cleaning and that would be it for a few months. But, Dr Hambleton saw the panoramic xray that was sent from the original dentist. He saw the calcification of the styloids and said look up Eagle Syndrome. You need to go see an ENT. Now, I have done some reading on the site and recently was diagnosed with two things that could also be the symptoms of having this rare thing happening. Meniere’s early stages and also Orthostatic Hypotension. I did not have these before my Autoimmune disease of the liver was introduced back in 2015. But, recently I have had trouble getting smaller pills down my throat and choking more on bites of food. I have sharp pain in my under my right jaw that comes and goes. And my sinuses are going crazy but, not going into an infection like usual. My hearing will go into a buzz and then cannot hear as well. When I turn my neck I get the feeling of discomfort like dizzy and pain. I thought this might be from a fall I took in college - I wore the cat collar that time for a few days… just slipped down some stairs. And there have been other neck injuries over the years… I had a car bump into me… well it slid on ice while I was at some mailboxes and bumped my one hip up … I did turn my neck to see this car but, you know the reflexes just did not move me out of the way. So, we shall see what Dr Sale says about this picture when I see him next week. It is great to be hear cheering you all on and pray for each of you to find relief on those bad days when the pain is so hard to bear. And I will keep you all updated on what Dr Sale says. I have a copy of my panoramic and you can see that both sides are white all the way down to the hyoid bone. Thanks for listening to my journey so far.

Mello (HuggieZ as I tell my friends)

Hi Mello!

Welcome to this wonderful forum. So glad you’ve taken the time to read posts & familiarizing yourself with the goings on here!

Your “car” accident sounds scary! So glad you weren’t severely injured! I too had a neck injury when I was in college - whiplash when I was rear-ended while getting off the freeway. I’ve long wondered if that began the onset of ES for me. I also suffer from Meniere’s Disease which was the result of a head injury I suffered between my 2 ES surgeries (2015), so I completely sympathize w/ your hearing symptoms from that.

All the symptoms you mentioned have been seen w/ ES except the autoimmune kidney problem. I had orthostatic hypotension (I believe from irritation of the vagus nerve by my elongated rt. styloid). It was worse when I did hard aerobic exercise. My blood pressure would drop instead of increasing, & I would get very dizzy. It was pretty scary. I choked on my food & drinks, had a sharp pain under my left jaw (could actually feel the styloid there) that radiated into my neck, & had dizziness when my head was in certain positions. I didn’t have the sinus trouble but many others on this forum have had that as an ES symptom.

As you’ve read, most doctors prefer a CT scan of the neck from skull base to hyoid bone in order to make a diagnosis or consider surgery. I presume Dr. Sale will request one for you if he needs more evidence. From your description it sounds like your stylo-hyoid ligaments could be fully calcified from hyoid to the tips of your styloid processes. There have been people on here who’ve had that as well, but it’s not as common because ES symptoms often get unbearable before the calcification goes that far.

It will be very interesting to know what Dr. Sale says. Please do write a post after you see him to update us.

I will be praying for a productive appt for you!

:blush:

Hi & welcome! Glad that you’re finding the site helpful, & that you’re sharing your story! I hope that your appt. goes well- if Dr Sale agrees with surgery for you, I would check that he will remove all the calcified ligament and shorten the styloid processes for the best possible results for you.
I had an accident with quite bad whiplash too, seems quite common here!

image
Does this look like calcification to you from your experience with the other styloid pictures? This is what my periodontist was concerned about bilateral calcification. I am so glad I could get in with an ENT on the list. I will update as soon as we know. KU Health Systems are pretty prompt in moving things along if there is a problem.
Just hope my case will be one of those and I hope others on here will benefit by seeing this picture of what a dentist can see and report as something fishy.

Have a better day/evening today.

HuggieZ! Mello

Goodness, yes! They are long pointy beasties! Great that your dentist recognised ES, & hope that you can see a doctor soon! Have you checked out the Doctors list in the Doctors Info section?

WOW! Those are some long styloids or calcified ligaments - hard to tell which is which sometimes, Mello! So glad you have an appointment w/ Dr. Sale soon. Sure hope he sees the immediate need to get those beasties outta there! Update us after you see him, please. Also, good to hear the KU system is efficient.

:partying_face:

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I highlighted what it seems like the calcifications/elongations.

They are hard to miss!!! :joy:

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Thank you for your feedback on what you see. No wonder my periodontist called ES and said I will refer you to an ENT. 26th is coming we will see what Dr Sale sees. God bless. Have an adventurous weekend.

Mello HuggieZ!

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From what I know Dr. Sale is an excellent choice. I believe he is a skull base surgeon who knows his way around the intracranial area. I know he is head of his department. He operated on a member and I had planned to make an appointment with him last summer as he was the closest known doctor to me until I found Dr Nuss in Baton Rouge. Good luck and keep us posted .

Wow! Two day down from seeing Dr. Sale. I have been having more pain since I had to have my deep cleaning done in two days within a week. 2 hours each time mouth open and closed. Have you all had dental work done when you were waiting for diagnoses that made you feel worse after? My jaw clicks all the time when I open my mouth too. Just a gambit of unwellness here cropping up in the last two weeks. And my neck bones in the back you can push them around. This is fun stuff, not. I have been reading all your stories that I can get to on here. There are quite a lot of differences and severities of symptoms. I pray that you all will get the reason for all the pain and be able to be on the other side of this strange and rare disease. Have the best day you can today. HuggieZ!

Thank you for all the answers to all the questions. At this time Dr Sale saw the calcification but my symptoms did not match ES. So, I got a diagnosis of TMJ because of the clicking and allergy maintenance. He also mentioned fibromyalgia which I have been diagnosed with polyarthralgia. Thank you for letting me part of this community for a little while but, I am going to step back here and be silent since my journey with this is not continuing. I praise the Lord for His direction and His answer. God bless you all that are going through this and I pray that your journey will be easier to diagnosis and to treatment.

Mello (huggieZ!)

I hope that you can get some answers and some treatment; feel free to keep in touch on here & let us know how you’re getting on, big hugs

Hi Mello,

I hate to be a nay-sayer, but I do feel strongly that since your dentist noted elongated styloids, you shouldn’t totally dump the possibility that you have ES. If your symptoms persist or get worse after you have other treatments or therapies, it would be worthwhile revisiting the ES idea. Even experienced ES doctors have differing opinions as to which symptoms belong to ES & which don’t. Many are dismissive of TMJ type symptoms & other common ES symptoms yet so many people on this forum have found having ES surgery has resolved or really helped those types of problems.

Just know we’re always here for you should you choose to come visit us again!

:relaxed:

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Hello Everyone, I’m new here and was hesitant to sign up because after over 20 years of ENT treatment got an ES diagnosis last September and had it withdrawn in March. Was given a severe c3-c7 degeneration diagnosis last week. I’m hesitant to believe the new diagnosis because my symptoms are unilateral and started with headaches, ear pain and pressure on the right side. Now I also have hearing loss, neck pain, jaw pain and throat pain on same side. So if you all do not mind I’d like to stay until I am absolutely sure I do not have ES. It took over 20 years to hear a medical name of something that sounded close to my symptoms. If anyone wants to ask questions I will answer all to the best of my knowledge. It is good to hear people who know the symptoms are not just in my head.

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Hi DeeG,

I’m sorry I didn’t see this post before replying to your other one. You’re smart to have concerns about the diagnosis regarding your cervical spine especially since your symptoms are so one sided. There has been more than one person on this forum who has had neck issues that ended up being the result of ES even though they were diagnosed w/ cervical disc disease. In some cases, there truly was disc disease though & additional surgery was necessary.

Your symptoms have all been seen w/ ES. I’m flabbergasted that you would be diagnosed w/ ES then have that diagnosis rescinded. Was this done by the same doctor or did one diagnose you & another tell you that you were misdiagnosed? There are doctors who think ES is only elongation of the styloid process(es) but the true definition of Eagle Syndrome is elongation of the styloid process(es) OR calcification of the stylohyoid ligament(s) OR a combination of the two. If your diagnosis was only based on styloid length w/o regard for possible ligament calcification then your diagnosis/misdiagnosis weren’t accurately made. Hopefully w/ the information you learn from this forum, you’ll be better armed to get a proper diagnosis.

Did you ever get to see scans/ xrays & radiologist reports when you were first diagnosed? It would be interesting, & also to know why your diagnosis was retracted.
How long have you had symptoms? There’s lots of info in the Newbies Guide if you’ve not had a chance to look yet. I had symptoms for years, but they ramped up as I got older, & definitely got worse when I developed a disc problem in my neck too.
There’s a list of doctors experienced in ES in the Doctors Info section if you want to try & get another opinion.
You don’t have to have a diagnosis of ES to be here, a suspicion is enough! So you’re very welcome here, & hope that you get a diagnosis & help soon.

Fell. Slight concussion. Recurring symptoms of headache, ear pain, feeling of object in right eye and neck stiffness diagnosed as allergies. Later diagnosis tension headache and depression. Then diagnosed with slight scoliosis. Somewhere in there was told I had allergic bronchitis. After hurting lower back started swelling over whole body. Ears pressure was constant from 2■■■■ when I forced ENT to put tube in my ear. Told I had eustachian tube dysfunction. Told I had atypical Meniere. Then this is best, told I was hypermanic and had paradoxical insomnia. Neurologist literally Wiki-diagnosed me. Got lump on throat and rash didn’t sleep for days that was hyperthyroidism, rescinded. ENT prescribed diuretic for ear pressure and now I have high BP that only responds to diuretic. HBP meds make BP rise 20 points. VA finally diagnosed migraines 2016. Now, ear problem is either Otosclerosis, degenerative disc, pinched nerve, chronic infection scar tissue, atypical Meniere, hypochondria or depression. Surprisingly, I am I excellent health otherwise. I work, volunteer, travel, give platelets and do home projects by myself. When I’m alone I can control the noise better and don’t have to talk. The thing I notice more is it does hurt to talk and I cannot keep up with conversations so I avoid going out in groups. Problem is I’m in the legal field and I must communicate legal concepts and sometimes I can’t get the words to sound right or I just mumble when I think I am speaking at a conversational level.

Sounds like you’ve really been through the mill- lots of members have been misdiagnosed & fobbed off for years, so you’re not alone there. Some symptoms could be down to ES, as other members have had them- ear pressure, migraines, tinnitus, hearing loss, ear pressure, & occasionally problems with blood pressure.
It sounds like you’re really strong & keeping as busy as you can, hopefully you can stay strong enough to keep fighting for a diagnosis…

The support is so refreshing. My friends know I am in pain, but no on understands that I seem to be well, but cannot even stand a human voice some days. Reading posts makes me remember other symptoms I forgot I have since I have lived with most for half of my life. So glad someone gave me the info on this group. It makes me know fixing discs will not be the entire answer. I will get to the right doctor and I will live in less pain. My life is very good now so I figure without constant head and ear pain it will be outstanding! I just want to enjoy flying, eating out with my friends again and I want to sleep all night for a month straight without the whoosh, buzz and Bing, Bing in my ears. This group has reignited the flame the doctor kicked sand on last week. Each day something happens to validate my belief things come into my life at the right time. I was a little down after the latest round of tests and walk back of the previous diagnosis. Wishing you all a wonderful week!

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