Hi! Hope everyone is doing well. I wanted to make a post about Clicking Hyoid Syndrome and my recent experience with surgery for this condition, in case others are dealing with this as a rare comorbidity of CCI/AAI, ES, TCS, TMJD, etc. etc.
Take this with a grain of salt because I’m not a doctor, and apologies in advance to those who already know about this, but a lay understanding of this condition might be as follows:
- Clicking XYZ Syndrome involves bone/cartilage structures in the front of your neck building up extra calcification until they volumetrically and/or mechanically interfere with nearby structures, especially during swallowing and neck movement when you can actually hear/feel “clicking” from the bones touching other structures.
- I say “Clicking XYZ” because you can have Clicking Hyoid and/or Clicking Thyroid, depending on what structures are built up. I technically had both, but the hyoid part of it was much worse.
- Basically, your hyoid bone and thyroid cartilage can only be so large before they don’t fit comfortably in your neck without snapping/clicking over vasculature, nerves, etc., and causing soft tissue damage.
- Ofc etiology is speculative, but presumably regular application of abnormal forces (e.g., from cervical instability, kyphosis, etc.) could lead to your hyoid and/or thyroid getting “built up” with extra bone. Acute injury could be a factor. And anatomic variants of the structures and/or their positioning could be a factor as well. All these were likely the contributing factors in my case, so I apologize for not knowing any other potential ones.
It’s a little bit complicated to give my whole medical situation/timeline and it would distract from the main point of this post. Long story short:
- I was “hunched over” because of congenital conditions with my spine and rib cage, which I had successful surgery for in fall of 2023 and fall 2024, respectively.
- I also had CCI and received two very effective rounds of PICL injections, both in 2023.
- As my upper neck stability improved and it became possible for me to be upright with good posture, it was clear there was a mysterious “new” issue in the front of my neck that had been masked by these other conditions and was getting worse while the old issues were getting better.
- Specifically, I was experiencing a sharp tearing with snapping/clicking sounds where the ends of my hyoid bone were during swallowing and talking. And while many neuro symptoms had improved as my CCI and posture improved, I was having new and different neuro symptoms (described below).
- I was referred to Dr. Karuna Dewan at Ochsner LSU in Shreveport, LA in early December, saw her in late January, and just had bilateral hyoid surgery on March 6 with pretty much complete resolution of my symptoms.
So, if you have responded to other interventions (like PICL) but you’re now having new and strange symptoms with CLICKING where your hyoid and/or thyroid are when you swallow, Clicking Hyoid (and/or Thyroid) might be something to rule in or out.
Symptoms to be suspicious of:
- Clicking: Yes, feeling the sharp edges of your hyoid “snapping” or “clicking” or audibly “tearing” over vasculature, soft tissue, etc. in your anterior neck when swallowing. This is the main symptom. It is truly awful and I’m not sure how else to describe it. There’s very obvious sharp pain where the bone has gotten elongated and it occurs when swallowing, moving the neck, and to some extent when talking. The snapping of the sharp ends of your hyoid (and/or thyroid) can be felt physically if someone palpates your neck when you’re swallowing. (Obviously, if you do have this, you don’t really want to be routinely pressing on the front of your neck, but you can do so just to check, and a medical provider would be able to do this ofc.)
The other two major symptoms I had were:
- Carotid sinus syncope: if I turned my head I would shake, throw up, pass out, etc. because my carotid bulbs were being irritated by the hyoid.
- Syncopal seizures: seizures caused by lack of bloodflow to the brain. I would have an “aura” followed by strange whole-body, intense and involuntary muscular fasciculations in a state of altered consciousness when I laid on my left side. Note that this is not the same as dystonic storms which can occur with Eagle Syndrome and it’s not the same as regular (electrical) seizures.
- I don’t know that these two neurovascular type symptoms are typical or characteristic, but they were very severe in my case, started having a big impact on my day-to-day, and pointed to an issue affecting the carotids.
- I also had dysphagia, odynophagia, dysphonia, etc. etc. but I don’t think you can over-index on those, because they could be caused by any of the comorbidities (CCI, ES, TMJD, etc.).
Tests required:
- Barium swallow study
- Neck CT with contrast (it may have to be a CTA actually, I’m not sure — I had a CTA pretty much head to heart because I was having stroke-like symptoms with this)
- Physical exam and scope during in-person consult with Dr. Dewan
Surgical experience:
- So, I had hyoid (and thyroid) surgery in Louisiana with Dr. Karuna Dewan about four weeks ago on March 6th.
- She cut the stylohyoid ligament attachments off the lesser horn of the hyoid (they were calcifying for me so this was extra helpful in my case), cut off the greater horns of the hyoid, and cut off some of the top of the thyroid cartilage.
Pros:
- I had a great experience with Ochsner, Dr. Dewan and her resident, Dr. Latour, and all the nurses and staff. This was the easiest recovery of the three surgeries I’ve had. I had surgery on a Thursday and was discharged from the hospital on Saturday morning. We stayed in Louisiana for another week and a half because I wanted to wait that long to get the bandages off and be cleared to go home (due to slightly slow healing in the setting of hEDS).
Cons:
- I will say, the roads in Louisiana are pretty brutal if you have any spine instability, and my biggest tip for anyone considering this with underlying/remaining instability has nothing to do with the surgery itself. Shock absorption for driving in northern Louisiana will be crucial.
I am happy to share other specific details of recovery, tips and tricks, etc. to anyone who reaches out to me with interest.
Caveats:
- Please note that I don’t know what would happen if you removed the extra bone from the hyoid without treating the ligament instability first. I imagine that you would increase the instability because you’ve removed the extra bone that is stabilizing. Also, the surgery involves transecting the stylohyoid ligament from the hyoid side, and I imagine that you wouldn’t want to do that without decent upper neck stability either.
- It sounds like I was a very straightforward case, and my surgery was quick and straightforward with no complications. I know that’s not the case for everyone since the anterior neck can get pretty complicated. I feel very thankful for these medical support groups since you all helped me figure this out to begin with, and thankful for all the medical providers getting me in so quickly and performing a successful surgery.
Outcome:
- Pros: I noticed big changes upon waking up from surgery and in the four weeks since! 1) No more clicking/tearing/snapping. 2) My two big neurovascular symptoms (syncope and seizures) are gone. 3) My hyoid is able to move up and forward normally with full range of motion now (it wasn’t able to move forward when I would swallow before the surgery). 4) My neck has a more normal curve instead of being pretty straight. I feel as though the hyoid had been holding the neck under tension and now my neck feels “relaxed”.
- Cons: It’s definitely changed my head/jaw/neck (in)stability situation, with some areas appearing more stable than I thought (upper neck) and other areas appearing less stable (jaw, lower neck), but I’ll have to continue assessing as I get reacclimated.
I hope this helps even one person who doesn’t know why bones are painfully clicking in their throat when they swallow despite treating CCI, kyphosis, ES, etc. successfully.
P.S. I know I’m posting on the Living with Eagle group now, where you all are probably well-versed in all of this! I made one post I could put in several different Facebook groups plus on here and I think the awareness of hyoid issues will be much lower in certain FB groups, hence all the explanation that I went into. Thanks for bearing with.
Best,
Brittany
but Dr. Dewan basically said they reattach everything that isn’t targeted and not to worry about the integrity of your throat after this. All the muscles dissected through were stitched back together, for example (as muscles wouldn’t function without an attachment point, I guess that’s a bit obvious). I don’t know if they cut the muscles off the bone and then reattach them, or if they cut a little ways up the muscle and then stitch muscle to muscle. Also, I don’t know if she took ALL of my greater horns (as they were quite elongated) and/or if they could have put things that were supposed to attach in one place (like on the greater horns) just a centimeter or so to the side so that they could attach to the reduced greater horns … or what. If the latter, then theoretically my “new” hyoid with revised attachments would actually have the attachments where they are supposed to be.