Discussions By Condition: Ears, Nose, Mouth & Throat conditions

Discomfort on left side of thoat = "hyoid syndrome"...?

  • Posted By: miskatonic
  • July 5, 2009
  • 04:33 PM

After reading through the "pain on one side of throat" thread, I thought I'd share my own story on the off chance it might be useful to someone. The main syptom in that thread seems to be pain, whereas what I have been dealing with since the winter of 2008 can best be described as a constant sensation of pressure against on very particular spot inside my throat, combined with occasional pain and bizarre sensations throughout the oral cavity.

Since my condition hasn't (primarily) been painful, it's difficult for me to express in words why it has been such a source of misery. The bottom line is that it always feels like I'm being jabbed in the neck, more or less every waking minute, and this is both extremely distracting and anxiety provoking. Additionally, when the syuptom is at its worst, it creates an uncomfortable prickling sensation in the same spot whenever I swallow. The intensity of the symptoms wax and wane to some degree, but it's always there. I've noticed that anything which offends my mouth tends to make it worse (speaking loudly, consumption of alcohol or marijuana, consuming highly acidic foods).

The onset of my symptoms came shortly after a root canal, but I'm inclined to think that's incidental as I have since had my teeth examined by multiple people, and there's no sign of any dental problems or infection. Additionally, the tonsil on the left side of my mouth is very slightly larger than the other side, and I have a slightly swollen cervical lymph node. As convenient as it would be to think this is all the result of some kind of chronic infection, I haven't had any significant problems with sore throats or illness, and while I do get some tonsil stones out of that tonsil, that's been the case for a good fifteen years, which also leads me to believe it may not be related.

I've seen six different ENTs, two dentists, a stomach specialist, two speech therapists, and two different primary care doctors. I've had a C/T, a barium esopheogram, a thyroid sonogram, blood tests, a camera down the throat to the stomach (without anesthesia!); the works. All of the diagnostics have essentially been normal. The first ENT told me that I had reflux, but several months of twice daily PPIs did nothing besides hurt my digestion. The second ENT told me this is a result of my TMJ/bruxism but a TMJ specialist was incredulous of this idea. The third ENT told me I might have tonsillitius, and that if it persisted long enough he'd take my tonsil out. The fourth told me I have neuralgia, and prescribed lexapro which did nothing besides make me feel like I was on mars.

At that point I gave up for a period of time, and relocated out of state for a job. I went and saw a fifth ENT during the fall of last year, and her diagnosis is the first one that seems like it might be accurate. She told me about "Eagle's syndrome", which is an elongation or calcification of the styloid processes. My CAT images do not show any such elongation, but she was very convinced that in some cases a similar symptom can arise from inflammation or irritation of the tendons which connect the styloid region to the hyoid bone. Unfortunately, she told me that all she could offer was a low-dose of amiltrypaline, and that if this was not successful in making the symptoms manageable, there is a surgical option which involves removing part of the greater cornu of the hyoid bone on the affected side. She has performed this operation in the past successfully, but cautioned me to think long and hard before jumping at this option because it involves cutting through muscle very close to the nerve structures which control the face and jaw... eep!

At the advice of my primary care doctor, I sought another opinion from an ENT whom she liked. He told me that the only clear diagnosis he was comfortable with is that I have an inflammatory condition of some kind, and therefore it would be unwise to have any surgery as surgery can make inflammation worse. He suggested revisting the idea of a dental problem, and a week ago I was again given a clean bill of dental health.

I felt bummed when I struck out with the dentist, back to square one, but I have concluded that the specific point of discomfort corresponds almost exactly to the point in my throat where the greater cornu of the hyoid bone is palpable through the oral cavity, and this caused me to research the idea given by ENT #5, that I have some kind of tendon problem with the joint on the left side of the hyoid. Despite her referring to this as a variant of Eagle's Syndrome, I have decided that what she describes is better known in medical literature as Hyoid Syndrome (and, indeed, the operation she mentioned has been described as fairly successful for treating this affliction).

In my wanderings across the internet, I came across a paper called "Hyoid Syndrome: A Pain In The Neck", which describes the symptoms as such:
* Lower facial / neck pain radiating to a variety of areas
* all patients, when asked to point to the area of most discomfort, indicated an area overlaying the hyoid bone
* most patients described the pain as worse when swallowing
* many patients described a sensation of a foreign body
* all cases were unilateral, with a nearly 50/50 split between the left and right side of the neck
* symptoms present for 3 months to 4 years in the sample group in the study (13 patients)
* all of these patients had had extensive diagnostics which showed nothing remarkable; a couple had had teeth removed or sinus surgery to no avail
* in all cases, examination revealed tenderness upon palpitation of the neck in the region of the greater cornu of the hyoid on the affected side
* palpitation of this area recreated/exacerbated symptoms
* bottom line: diagnosis is achieved by the exclusion of any physical abnormalities or infections with various imaging techniques, combined with the specific finding of tenderness over the hyoid bone.

This describes my symptoms so accurately, that part of me might be bracing for the surgical procedure if not for one thing: in this study, 100% of the sample group received relief from symptoms following one to three injections of a depomedrone/lidocaine mix directly into the affected area.

Needless to say, that sounds a lot safer than paying someone to excise part of a bone through open neck surgery, so I will be bringing this paper to both of my local ENTs over the next few weeks to see what they think. The paper concludes by saying, essentially, that this information should be disseminated as much as possible, because it provides a relatively benign solution to an irritating problem which doesn't seem to have many downsides.

The only thing that alarms me at all - and this is something I will be asking my ENTs about - is that the paper mentions another paper where the neck of a hyoid syndrome patient was surgically evaluated and revealed atrophy, necrosis and calcification in the region of the affected tendon, and then goes on to mention that this patient had received steroid injections to the area and speculates that those injections could have been partially responsible for the muscle atrophy. However, the author of the paper obviously had no qualms about recommending a steroid based treatment, and I suspect there may be something that I am not quite understanding, causing my alarm. I've become extremely good at comprehending medical literature about the neck over the past couple years, but I have not had any medical training, and am merely a highly interested laymen.

Anyway, I realize this was long, but it's been quite an odyssey for me to get to this point, and I wanted to share as much information as possible in the hope that it may be useful to someone. I cannot reproduce the paper in full detail here because I think it would be a copyright issue, but I have found the full text available on a publicly accessible URL, and I would be happy to point anyone who would like it in the right direction if you drop me a private message or email.

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9 Replies:

  • WOW! Thank you for the post! I thought I would never know what I had especially since all of the doctors can only seem to think that my symptoms stem from GERD. Please send me any information you have to gtpcs@yahoo.com.Thanks,GT
    Anonymous 42,789 Replies
    • September 17, 2009
    • 03:24 AM
    • 0
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  • Hi there,I've just stumbled across your post in a vein attempt to figure out what's going on with my body and it's really struck a cord and I'd be really grateful if I would be able to take a peek at the paper you reference. My odd scenerio is that last year for 6 months I had horrible pain in the front/right side of my neck and pain with swallowing and talking, it turned out that I had a thyroglossal cyst which was removed alongside part of the hyoid bone this Jan. This immediately fixed my symptoms and I was fine for 6 months, that is until I got pregnant. Literally within days of getting pregnant in June the symptoms were back (though not the pain swallowing) - pain/aching in the front/side of my neck/throbbing round the area of my op and horrid pain when speaking - like a straining sensation. I assumed that the cyst had grown back but an ultrasound, blood tests,neuro examination and an mri later there is no apparant physical reason for my pain and the specialists have essentially just brushed me off as they can't figure out what's wrong. I'm sure the pregnancy has triggered something but they seem to just not be interested/think I'm slightly insane! I can't even explain the impact it's had on my life - I am in pain every day (and have been for 4 months), the only saving grace is that it's not as bad as it was at the beginning. However the pain also now seems to travel up to the bottom of my right jaw and my right shoulder. So essentially I am on a mission to try and get to the bottom of this, to try and understand it. It may indeed just go away after the pregnancy - but I'm not so sure! I'm booked in to see my doc next week to get refered to a different ENT I think and am trying to arm myself with as many questions and as much info I can. Hyoid syndrome seems to explain some of it though I'm not sure if it would match my history hence the desire to find out more! I'm not sure how to send a private message on here so if you do have a minute or 2 to drop me a note back that would be so very much appreciated. Many thanks
    lking3010 1 Replies
    • September 24, 2009
    • 08:20 AM
    • 0
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  • Wow! thank you so much for posting this. Would you contact me? I want to compare notes, thanks stickpile39@yahoo.com
    jjittery 1 Replies
    • October 20, 2009
    • 05:35 PM
    • 0
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  • Please contact me. I too have hyoid syndrome and have scheduled this surgery out of despiration...13 years of pain. So many questions for you. I noticed the date of your entry jun/july 2009...what part of the world are you in? what hospitals have you been too? have you researched surgeons?tmbc1963@gmail.comtina
    Anonymous 42,789 Replies
    • November 10, 2009
    • 10:35 AM
    • 0
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  • As an update - I have not done anything yet. There are risks associated even with the injection (tissue damage; serious nerve damage if a nerve is injected by mistake).Dr. Gerald Berke of UCLA seems to be regarded as an expert in this area, and has performed this surgery possibly more than anyone else ever. There's a long thread on this subject over at the medhelp forums, http://www.medhelp.org/posts/Ear--Nose--Throat/hyoid-bone-problems/show/7690I'm going to be starting physical therapy next week to see if improving muscle strength and posture makes the symptoms any more tolerable. Surgery is still in the back of my mind, but that option really alarms me, for obvious reasons.
    miskatonic 2 Replies
    • November 20, 2009
    • 07:41 PM
    • 0
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  • I believe I may also be suffering from this. Can you send me all your documentation at stevo2k@comcast.net ?I see that these posts are fairly old. Do you have any updates?
    Anonymous 42,789 Replies Flag this Response
  • As an update - I have not done anything yet. There are risks associated even with the injection (tissue damage; serious nerve damage if a nerve is injected by mistake).Dr. Gerald Berke of UCLA seems to be regarded as an expert in this area, and has performed this surgery possibly more than anyone else ever. There's a long thread on this subject over at the medhelp forums, http://www.medhelp.org/posts/Ear--Nose--Throat/hyoid-bone-problems/show/7690I'm going to be starting physical therapy next week to see if improving muscle strength and posture makes the symptoms any more tolerable. Surgery is still in the back of my mind, but that option really alarms me, for obvious reasons.Can you please help me I wrote you a letter on web md I too am suffering from this please help me and give me some advice since you been around the ring already...been dealing w/ a click thathurts my inner ear too pain stems from left side across from adams apple. Tongue hurts and left side of face get headaches alot please i need you help!!! email me mikey6e@yahoo.com or get at me on web md please I'll even send you my # so we can taalk if it is easier!
    Anonymous 42,789 Replies Flag this Response
  • As an update - I have not done anything yet. There are risks associated even with the injection (tissue damage; serious nerve damage if a nerve is injected by mistake). Dr. Gerald Berke of UCLA seems to be regarded as an expert in this area, and has performed this surgery possibly more than anyone else ever. There's a long thread on this subject over at the medhelp forums, http://www.medhelp.org/posts/Ear--Nose--Throat/hyoid-bone-problems/show/7690 I'm going to be starting physical therapy next week to see if improving muscle strength and posture makes the symptoms any more tolerable. Surgery is still in the back of my mind, but that option really alarms me, for obvious reasons. OMG just ran across this and had to let you know the risks of getting an injection anywhere near the nerve bundle in your neck area is NOT an option. I had deopomedrol steroid injection 2 years ago for a pain procedure of my right side, ended up paralyzed on left side of my body,spent 10 days in hospital to rule out a stroke. used to type 65 WPM, now I'm pecking this out with one right handed finger. OCCUPATIONAL Therapy for 8 mos hasn't helped, my left hand looks like a claw, I lose my balance and fall because of left side weakness, doctor won't even consider he missed or the medicine leaked to left side controlling nerves. PLEASE don't let anyone near your neck nerves for any reason. I couldn't even hold my new grandson, couldnt peel a cucumber if my life depended on it, and have suffered very dangerous burn, since I have no feeling on my left side. Lost my job...too much of a safety liability
    OlderNotWiser2010 1 Replies Flag this Response
  • OMG just ran across this and had to let you know the risks of getting an injection anywhere near the nerve bundle in your neck area is NOT an option. I had deopomedrol steroid injection 2 years ago for a pain procedure of my right side, ended up paralyzed on left side of my body,spent 10 days in hospital to rule out a stroke. used to type 65 WPM, now I'm pecking this out with one right handed finger. OCCUPATIONAL Therapy for 8 mos hasn't helped, my left hand looks like a claw, I lose my balance and fall because of left side weakness, doctor won't even consider he missed or the medicine leaked to left side controlling nerves. PLEASE don't let anyone near your neck nerves for any reason. I couldn't even hold my new grandson, couldnt peel a cucumber if my life depended on it, and have suffered very dangerous burn, since I have no feeling on my left side. Lost my job...too much of a safety liabilityWell, I guess I'm glad I didn't see this before, because I had the injections and they were no big deal. The specialist I saw used x-ray fluroscopy to verify correct placement of the needle, to avoid the very problem you mentioned -- and he was also against using steroids (for the same reason).Prolotherapy did help a bit, but I clearly have some kind of issue with these muscles, and I'm not confident that anything short of really extended patience, stretching and posture changes are going to 'fix' it.
    miskatonic 2 Replies
    • October 27, 2010
    • 05:59 PM
    • 0
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