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Thank you for replying headcase! I actually just had the shot today. The doctor doesn’t think I have elongated styloid processes but there might be some calcification of the ligament near the hyoid bone. So he injected me right by the hyoid bone. So far I’m just really sore where he was poking around and can’t tell if it helped. Not sure if it takes effect immediately or maybe I have to wait a little bit. Also I’ve been having horrible shoulder pain on both sides, not sure if that’s a separate problem or part of this. I’m such a mess! As so many of us are :tired_face:

SewMomma might be able to help you with that question. She had two, now one calcified ligaments and is the calcified ligament expert (I’m sure many others on the board are experts on the same thing, but I just know she is for sure). PAIN SUCKS but you’ll get this figured out. Like SewMomma tells me, baby steps.

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Hi Kaska - I’ve been there. I was so hopeful the shot was going to be magical. Not so. If you don’t mind, I will post more about the shot under “thankful for you all”. I like to keep all my history/info in one neat spot. I’m tidy like that :sunglasses:

Thank you!! I will read it! seems like I’m just more sore after than anyting. I am so disappointed that it didn’t work, trying to control my emotions today. Seems like after every doctor visit my day is ruined. I’m sure we’ve all been there. But thank you so much for responding!

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Been there, cried about that. It’s so hard. When you have time, I posted about my injection. Jules - pour a fresh cup of tea before you read it :rofl::rofl::rofl::rofl::heart::heart::heart:

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Headcase & Kaska,

The shot generally helps immediately since it contains a numbing agent & the effects can persist, as I said, from minutes to months, if a steroid is included. That said, quite a number of people feel no effect from it except localized soreness from being poked. This type of shot is used as a potential diagnostic tool for ES & can be helpful if it even temporarily takes away the typical, throat/neck pain caused by ES. As you can see from Kaska & SewMomma’s experiences, it is not a totally reliable tool. The injection is often done in the neck, but I’m not sure of the specific location. That may vary according to where the pain is.

Kaska, shoulder pain is a known ES symptom. It can be an indicator that your accessory nerve (cranial nerve XI) is being irritated by the elongated styloids or calcified ligaments. Once you have surgery, that problem generally goes away.

Jules wrote a post in 2016 that covered cranial nerves and ES symptoms quite extensively. The post is long but quite thorough. The information is invaluable for helping to understand many ES symptoms. I’m including the link to her post here: ES Information: Common Symptoms And Possible Explanations For Them

I’m seeing dr. Brian Moore at Ochsner Medical Center in New Orleans. Just wondering if anybody has seen or heard of him. My ent referred me to him. Also I want to know if anyone feels like this. When I first get up in the morning I feel like there is no pain. As soon as I start moving around all my pain starts up, in the front of the neck and down my back. Also sometimes I feel the pain starts in the middle of my forehead and moves its way down to my temple and then to my neck and to my chest, like its traveling.
Wondering if any of you have had these symptoms. Feel like I’m going nuts.:persevere:

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Hi Kaska,

First off, I’m sorry your pain is traveling & making you feel crazy! We’ve all been there at some point. Not having a for sure diagnosis adds to the feeling.

It’s not unusual to wake up feeling good & then feel worse & worse as the day goes on. Some of your symptoms sound like “a variation on a theme” of symptoms others on this forum have had. The sensation of the pain traveling is new to me, but I can speculate that what you’re feeling is an “awakening” of irritated nerves, & the pain travels down the length of the nerves as you become more active during the day & the nerves become more irritated. At night when you rest, the irritation is less so the pain subsides. We each seem to experience some typical ES symptoms & then some that are unique. That’s part of what makes ES hard to diagnose.

The only doctors I know of are the ones on our US ES Doctors’ List, & Dr. Moore isn’t on there (yet). Dr. Nuss in Baton Rouge, who did Emma’s bilateral surgeries over the last several months, is the only surgeon from Louisiana we currently have listed. Please let us know if you like Dr. Moore & if he is supportive & helpful regarding helping you w/ a diagnosis.

Thank you for always replying Isaiah! Your so kind. It’s just so crazy because my pain comes all at once immediately after I start moving in the morning. Lately it’s also been visible on my skin by my carotid artery. It looks irritated, like a red rash and my lymph node is raised and it’s throbbing and pulling a little extra lately all in that area. I’m hoping this doctor will be kind and compassionate, these visits really take it out of me. I definitely will update if he is.

I saw dr. Moore in New Orleans. I really liked him! He’s kind, he listened to me and took his time. He’s familiar with eagle syndrome and actually wrote an article about it. He felt my neck and said oh wow, you’re carotid artery is really smashed against your hyoid bone. Then he looked at my CT scan and he doesn’t think I have eagle syndrome but hyoid bone syndrome. He said my hyoid bone is elongated towards my spine, and my jugular and carotid are jammed on the painful side. He wants me to do another CT scan since my old one is about 2 years old. So now I’m wondering if anyone here has had hyoid bone syndrome and what were your symptoms? It seems like throughout the months it’s even become visible by my carotid that there’s something wrong.

Wow, did your doctor comment on that rash? Other members have had swollen lymph nodes before, not sure that I’ve seen anyone with a rash like that, poor you.
Glad that your doctor was helpful…there have been a few members with hyoid bone syndrome, not sure that we’ve had many post surgery updates, if you use the search function on the site you might get some more info.
Thanks for the info on Dr Moore; I’ll have to see if I can find that research paper! What hospital/ clinic did you see him at? Did he think he could help you, has he done hyoid bone surgery as well?

Hi Jules. Thank you for responding. He is at the Ochsner Clinic in New Orleans. Of course the day I saw him my rash wasn’t that bad, but the first thing he said was wow did you get a scratch there. So he noticed it but didn’t comment too much on it. He was very realistic and talked about the risks of surgery. He wants to talk more once he sees my new CT scan. I don’t think he’s done the actual hyoid bone surgery but he said he removes tumors and he works around and with the hyoid bone. He said he is pretty much going to snip the end of it but he can’t promise that my symptoms will disappear. He’s just being realistic. He also said I won’t find a doctor who’s done a ton of these because it’s so rare. I’ve been searching but can’t find much about anyone with this condition on here. I’m just so happy that I finally am close to an answer. I just want to make good choices. I don’t want to rush into anything, I’ve been in this pain for a long time I can hold on for a little longer.

A member called ramblinman had the same, he posted a discussion, if you search for hyoid bone syndrome it should come up. I’ll keep looking for you!

Thank you Jules!!!

I’ve found ramblinman’s update- in a discussion ‘I have some questions about Dr Hussein Samji’, sorry; can’t post the link with my phone! He had thyroid cartillage removed in the end, didn’t need anything off the hyoid bone, they partly diagnosed him with an ultrasound which was interesting! Christian22 also has had hyoid surgery, you could message members otherwise?

Thanks Jules, I did see that. I’m going to reach out to Christian, thank you for searching for me :cry:

Hi Kaska,

I think redbird773 had a similar situation prior to her ES surgery. You could privately message her to talk about her situation. She is currently active on the forum. It is very interesting to see an outward manifestation of an internal problem. It almost looks like you have bruising along the line of the carotid artery from the impingement.

I hope Dr. Moore can help you. Even if he hasn’t done a hyoid syndrome surgery before, & since he’s very familiar w/ that part of the neck, his experience would more than likely make him a good choice to do your surgery.

Glad you’re getting the help & answers you need to proceed to better health.

Hmm that would be interesting, seems like it’s more irritated when I’m emotional or when I’m doing something active like cleaning. I can bring that up to my doctor. Thank you Isaiah!

Hi Kaska,

Think about what happens when you’re emotional - muscles tense, blood pressure often rises, breathing becomes more rapid - these are also things that happen when you’re cleaning or doing any type of physical work thus your body’s response to that type of stress is increased pain/inflammation/pressure on the carotid artery (in your case in particular) as everything reacts to your emotions or physical stress.

I would definitely give up cleaning then! :wink:

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