I’ve found out a few things over the last couple months.
I don’t have ES- although my styloids are longish. They don’t seem to be pushing on any arteries or my spine, although no one can see if they are pushing on nerves or course. I’ve discovered my pain is actually coming from my neck, more specifically, my hyoid bone.
I got a superior laryngeal nerve block, Kenalog injection into my right greater cornu, and another injection along the medial border of my scm near my jaw to addresss to stylomandibular ligament.
I had 9 virtually pain free blissful days for the first time in 1 year. I had some pressure in my hyoid area, but the pain was mostly gone. It sometimes came back at the end of the day after I used my voice a lot, but my life was back for those 9 days.
I’ve discovered my symptoms are directly related to how much I use my voice, laugh, cannot raise my voice or I’m in a lot of pain, sometimes sharp pain upon swallowing, and I have almost a nodule where my right greater cornu is. If I press in this area? Game over, pain is immense.
I’m meeting with Chhetri virtually on Monday, and feeling hopeful as my scans actually do show an elongated hyoid.
I don’t! My pain is very centralized in that area! However, it does radiate into my ear. With the nerve block in my larynx, the ear pain went away though.
I’m really glad you’ve got a solid diagnosis, @etherealcataclysms. Even more good news is that you’ve gotten an appointment w/ Dr. Chhetri who seems to be hard to see these days based on comments by other members who’ve attempted to get an appointment with him. I suspect he’s stepping out of the ES surgery business & focusing on other things. Since Hyoid Bone Syndrome seems even more rare than ES it makes sense that he’s taking an interesting in your situation.
Please let us know how your conversation with him goes. I will be praying for him to be willing to do your surgery so you can get back to a more pain-free life.
Thanks I much Isaiah It’s odd because I’ve read a few posts on here saying their surgery got rid of their ear pain- but other posts saying Chhetri doesn’t link HBS to ear pain. I can quite literally feel it radiating front my greater cornu, and those blocks are kind of the proof in the pudding for me though.
Hi all, update here: it’s a doozy not so much that in its super helpful but a lot of info.
I met with Chhetri. He said my hyoid bone looks totally normal, but so do most of his patients he operates on. For some reason, people just get pain here.
most people’s outcome is 50% pain relief, no one ever usually gets 100%. Some people get none, but no one gets worse.
surgery is straight forward and easy with very little risk. Go home same day, some throat pain for a week. He made it sound like a walk in the park.
I asked him if he ever cut the stylomandibular and stylohyoid ligaments. He said stylohyoid, but not mandibulr and he was willing to cut it on me.
since I had relief from my first round of Kenalog injections, he suggested i get 1-2 more before surgery to see if I can get longer lasting relief and longer term relief. I’m planning on pre-scheduling out my in person appointment after my third injection just in case
Here’s where it gets interesting. I got my second round of injections today, they are in 3 places. One in the thyroid cartilage where my superior laryngeal nerve is, one in the greater Cornu of my right hyoid, and one in the area of my stylomandibular and stylohyoid ligaments.
As SOON as the Kenalog and lidocaine went into the third injection area of those ligaments, my non stop ear pain went away. Immediately gone.
The lidocaine has work off and I’m currently just left with injection site pain.
If these injections don’t work, I have a true and legitimate theory that something is happening with not just the greater cornu, but both of those ligaments, and my ENT agreed that if I had the surgery, both ligaments should just be cut in one go vs me having to go under multiple times.
He said he’d fax notes over to Chhetri saying that that site in particular with those ligaments responded well to the injections in hopes he would reconsider cutting both.
I also can’t help thinking back to Dr. Annino who basically would do anything I asked of him and was so nice and willing to help, I think he’d cut both in a heart beat (not to say Chhetri wasn’t nice, he definitely was). I just can’t find many people who have had hyoid surgery with him to ask them about their experiences and results?
Anyway, that’s where I’m at! Hope the info is helpful to others, any thoughts would also be welcome! Especially anyone who had hyoid bone surgery with Annino haha. Thanks per usual!!
Thank you for the update! I hope that the injections help longer than the 9 days this time, really good that this is helping confirm the area causing pain… we have found that members are often advised about how easy recovery will be by doctors , a good idea to take that with a pinch of salt I feel! The hyoid surgery is much less common so probably not so many members to give you their experiences and tips about that I’m afraid
Well FINALLY!! I’m so glad Dr. Chhetri was receptive to doing surgery for you even if it’s with a bit of a delay. I don’t understand why doctors sometimes request a round two of a therapy to put off surgery when it’s pretty clear that surgery is what is needed. I guess in part it’s because they want their patients to make absolutely sure surgery is the answer they want to pursue if there are other less invasive ways to get relief.
I’m glad your second round of injections helped so immediately. That’s definitely telling that surgery could be beneficial. I hope Dr. Chhetri complies with your ENT’s recommendation to remove the stylomandibular ligament, too, since based on your kenalog injection results, it seems involved in your symptoms, too.
You might be interested in reading up on @CJsBattle’s posts as he had HBS & surgery for it, or send him a PM for more details.
Thanks ya’ll!! You’re both so supportive!! I hope he complies and is open too.
SO I actually have an appointment with a movement neurologist in Houston on Monday I’ve been waiting 4-5 months for- he’s written a crazy amount of research articles and treats palatal myoclonus- I’ve noticed with the injections that it slows my PM and makes my ear symptoms associated with it better too- so I was actually thinking, since he seems to be a very esteemed and expert injector, to see if he can and is willing to inject the stylohyoid and digastric muscles (or basically inject the muscles around where I’ve been getting Kenalog and it’s been working) to see if it actually stops my spasms altogether and gets me long lasting pain relief.
I can’t get injections done in my first visit because of insurance purposes, so I’d ride this second round of injections out and honestly, maybe a third, but if he’s willing, I think I would give that a shot before surgery. Any thoughts there?
(Still pre scheduling that Chhetri appointment though )
Btw, attaching where I get INSTANT ear pain relief from constant ear hell yesterday.
Hope your appt tomorrow goes well, it’ll be really interesting to hear about that! I don’t know too much about the kenalog injections, although my understanding is that it is a corticosteroid & I think there are limits as to how much you can have injected & how often? So that would be something to consider, it can have side effects …
Definitely! I can only get them done every 6 weeks. I’m curious to see if this round lasts longer. The ear pain went away immediately this time where last time, it took a week- which I found really fascinating.
I’ve been told cortisone injections can only be given 3-4 times, but maybe this is with cortisone injections in other body parts not specificially the areas where you’re getting them @etherealcataclysms. As @Jules noted, there can be negative side effects such as tendon ruptures from too many cortisone injections in a given area.
I’m also very interested in what you learn from the neurologist tomorrow. I hope he has an alternative treatment plan for you that’s VERY helpful.
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