Quantcast

Eagle Syndrome - Online Support Group

New to forum -- questions, thank you

Hello all,
I am grateful to have found this online support group and I am hoping that some of you may be able to help guide me. Several months ago, I developed a terrible sore throat; after about 8 days, I was struggling to breathe. I was out-of-town, and when I returned, I headed straight for my doctor. I was provided with an inhaler, even though I had never been diagnosed with asthma or breathing problems, and given an antibiotic for my sore throat. Both actually did help and I was told to stay on the inhaler for 6 months. At the four-month mark, my throat was on fire and I stopped the inhaler. My doctor said I had thrush; she prescribed medicine for that and thrush went away. However, my throat only became more and more severe, so she sent me to an ENT in May.

I explained to the ENT that I was having problems talking, swallowing, and eating, and that the pain was shooting from my throat up through my face and ears. He immediately diagnosed me with what he termed “a hyoid bone problem” and asked me to take Ibuprofren (800 mg/daily) for a few weeks. That did not help. He then prescribed Predinsone, 21 pills over 6 days. That has just barely helped, if at all.

He said if that did not help, he would give me an injection in my neck. I am scheduled to see him again Tuesday. Unfortunately, my ENT did not give me a specific name for this problem other than a “hyoid bone issue” and I’ve been in so much pain it did not occur to me to ask for a specific name. Now, doing my research, I see there is something called Hyoid Bone Syndrome and there is Eagle Syndrome. It seems they are similar, except with Hyoid Bone Syndrome it looks like neck injections could resolve this issue permanently and that surgery is not recommended. With Eagle Syndrome, it appears the neck injections are a temporary solution and surgery is the only answer.

My question: Has anyone heard of Hyoid Bone Syndrome? I will ask for more details Tuesday, but I am curious if anyone has heard of that or if anyone has been diagnosed with that. Also, if I have Eagle Syndrome, should I immediately seek out a doctor here in Florida, and if so, does anyone know if insurance covers this surgery if it is required? I am able to travel, so if there is a doctor outside of Florida, I am able to work with that person.

I have certainly written quite a lot, I am sorry it’s so long! Just trying to explain my story and, I suppose, get clarity for myself as well. This pain is really upsetting me; I have never quite felt anything this awful and I am nervous. Can’t talk, swallow, or eat without significant pain. Thank you for your help,

Rita,
There are some on this blog that have had the hyoid issues. Sometimes the calcification extends from styloid process, thru ligaments and attach to hyoid bone. I would demand doc do a CT scan without contrast. It may or may not show the hyoid attachment if that is present.
I had the shooting pain up the neck to the ear. It was excruciating. Went to 2 docs (and MRI’s that showed nothing) before being giving RX for dexamethasone (steriod) which did help to calm it down.This was in 2015. I then had flairs on a yearly basis until last year. One constant complaint was I felt like I had a bone in my throat. I was getting injections and all kinds of things that only brought temporary relief. I then was sent to a neurologist that specialized in injections in the neck and was alerted to possible ES. I then had worst pain flair in Dec 2019. I did get a CT scan and got final diagnosis.We have found that alot of docs dont belive in surgery for ES. Injections are only temporary relief as you have concluded. I wouldnt waste my time going to docs who dont believe it it or an inexperienced surgeon.
Im on the west coast and others on the list can suggest docs on east coast. I had my CT scan done and sent disk to Dr, Samji in San Jose, CA. My insurance covered it however you can pay out of pocket $300 for a review of your scans and video consult appt. He reviewed my scan within 10 days and I flew down for in person appt because it was cheap flight for me. He’s performed over 450 of these procedures. He does external surgery. You want to make sure to ask any potential surgeon how many of these procedures they have done.
I personally would focus on getting the CT Scan so you know what you are dealing with. It is considered the gold standard for ES diagnosis. I hope that helps. I twisted my PCP arm to order the scan.
Insurance does cover the surgery although in my case it was initially billed out as glossopharygeal neuralgia.

Thank you for all of this interesting and helpful information. I will definitely speak with my ENT on Tuesday about the CT Scan. After learning that many doctors seem not even to believe in hyoid bone issues, I am at least grateful that my ENT immediately recognized that I have a problem. I have received some information on experienced ES doctors on the East and West Coast so when, or if, I get to that point, I have some good choices.
I am grateful and so very appreciative for all of the kind and smart responses I have received so far. I’m happy to know I am not alone, but it breaks my heart to know that so many people suffer from ES and I can only assume a good number don’t get the help they need. So elated I kept researching the Internet for information; that is what led me to this group.
Thanks again, I loved all the information you shared with me.

Rita

Glad it is helpful. It took me 5 years. I do alot of deep dive research and never saw this term Eagles Syndrome. I lucked out seeing a doc who had knowledge of it and mentioned it as a possibility. Once I had the “Eagles Syndrome” to search under, that was it. I knew it was the problem. I was a classic case. Let us know how you progress. :grinning:

As a side note, I did find a recent peer reviewed study on Eagles that spells out that CT without contrast is the tool used to diagnose. I handed it to my PCP to support my request he order it. He grumbled about it but did it anyways. Your ENT seems to know some information about it and will probably be an easier person to order the scan.
There are several on this blog that had the ligaments attached to the hyoid. Hopefully they will chime in and give your their take on this.

I sure will stay in touch – thanks again. I can’t imagine going five years for resolution. You must be an incredibly strong person. The one thing I didn’t mention is that this is making me so light headed that I almost feel I’m going to pass out. It might be that I’m just not eating much and am losing weight, or maybe it’s just the nerves causing the pain throughout my head. I’ve always been active, very athletic and healthy, so this is throwing me off and, boy, I just want to get through it as calmly as possible. Once again, thank you and I will let you know my progression.

LOL. Yeah I am a bit of a fighter and stubborn. I guess its my scottish blood.
Alot of ES people have the dizziness and light headness. Compression can happen around the vagus nerve area that causes this. If you google vagus nerve, you can find out alot of how it functions. My daughter started passing out when she was 7 and the pediatrician said is was “Vasovagal syncope.” Another term to look up.

Hi Rita,

Dizziness can also be the result of vascular compression. The styloid process or calcified stylohyoid ligament can compress either the internal carotid artery or jugular vein when the head is in certain positions. This lowers blood flow to the brain which results in the light-headedness. Whether it’s caused by the vagus nerve or vascular compression, the problem should go away once your styloid/s-h ligament are removed.

Hi Rita,
I second the possibility of some vascular compression if you are feeling dizzy. The neck CT scan seems like an important next step, with the caveat that I do not have medical degree. For myself, I’d want the imaging before getting hyoid injections to make sure that I was being diagnosed correctly and that the treatment was appropriate.

Hello again,

I will certainly speak with my ENT about the dizziness. I have not been eating much as all; in fact, very little the past four days. (due to pain). I forced myself to eat this morning and I noticed improvement in terms of being light-headed. I should also mention that I had vertigo several years ago and tests were completed on my heart, ear, etc. It has not been a big problem until now with my throat issue. My mother had Meinere’s disease and suffered from terrible ringing in the ears and vertigo for years. She said it all went away when she lost her hearing at about age 75. I wish she was still alive so I could ask more questions about that. She was otherwise quite healthy and active; I also have been mostly healthy and quite active my entire life. I’m experiencing some new challenges that are difficult to understand but hopefully, I can get them resolved in the most prudent and safe manner possible. Thank you for your comments and continued support/help – very much appreciated.

Thank you – I am going to speak with my ENT about this on Tuesday. I agree it’s most important to proceed in a logical step. It’s a myriad of pain points right now, from my throat to my face to my ears to the top of my head. Can’t talk, can’t swallow, can’t eat without pain. Again, thanks for your advice, much appreciated.

Hi Rita,

It makes sense that some of your dizziness could be from low blood sugar if you’re not eating & especially if you’re still being very active. I am also quite active, & I also have Meniere’s Disease (the result of a head injury from a bike accident in 2015). Before Meniere’s, however, I had intermittent positional vertigo as, what I believe was, a very early ES symptom. Later, after I was diagnosed, I began having serious blood pressure drops w/ crazy heart rate elevation when I did a hard aerobic/anaerobic workout, especially if the workout caused any neck strain (rope slamming, for example). I would feel like I couldn’t catch my breath & was going to pass out. These symptoms went away after I had surgery. I believe they were vagus nerve induced.

In addition to ES surgery, I had surgery for Meniere’s to help prevent total hearing loss. The surgery is also supposed to stop vertigo. It initially restored my hearing & did stop my vertigo (which was minimal anyway). Sadly, I’m finding now that my symptoms have returned & vertigo is getting worse w/ time. Part of that may be my fault since I push my body very hard, & my hearing in the Meniere’s ear is a weak link for me at this point.

Here is the list of ES symptoms I had:
facial pain, neck pain, earaches, throat pain, tinnitus, intermittent hearing loss, TMJ, headaches both front & back, pressure inside my skull, pressure behind my eyes & in my ears, heart palpitations, blood pressure that dropped when I exercised instead of elevating, racing heart, vertigo, swelling in the roof of my mouth along my tooth line especially after exercise, minor tongue paralysis, jaw muscles that cramped when I sang (my jaw would sort of lock up), shortness of breath, swallowing problems (choking on food & liquids), aching collar bones & shoulders, sleeplessness due to pain…

Hello again,
Yes, I think you’re right – I suspect my light-headed/dizziness was (hopefully) the result of not eating much and still trying to get some exercise in so I can feel somewhat normal. But who knows; I do know after I forced myself to eat well this morning, the dizziness subsided quite a lot. My vertigo episodes earlier occurred on a cruise ship in very rocky waters. I remember laughing about it at the time, and thought it would improve once I got off the ship. It took quite a long time before I was better (I had the treatment where they moved my head back and forth real fast; never thought that would work but it did). I’m so sorry about your vertigo – not good news that it seems to be getting worse over time. The human body is an interesting study; so is the mind. So we have to stay strong; so much of this is a mental battle, at least for me, and I bet for you also. I was a long-distance runner and my father would always say “you’re tough Rita” (constantly!) thinking that would make me run faster, which I suppose it did. LOL. I keep hearing his voice right now; every time the pain crawls up into my ears and every time I swallow, and every time my darling spouse asks how he can help. So for now I’m sticking with my story – I’m tough, I’ll get through this. So will you, my friend, hang in there.

It always is so amazing to me reading the all too familiar symptoms of others. Yours is the first Ive heard mention jaw locking up. My jaw locked up for 2 full weeks. Could barely get my toothbrush in.

Ouch! Shayney! That sounds painful & inconvenient. I’ve had mine lock for a few seconds but no more than that. Glad it moving freely again.

Not yet…still stuff and painful but no longer locked.

Glad it’s “unlocked” then & hopefully surgery will help w/ the pain. :heart:

1 Like