Thanks so much for letting me join this forum/community. I have to say, I already feel a sense of relief knowing that I’m not alone on this journey of pain, searching for answers, and trying to stay positive.
Here is my story dealing with what I’m quite certain is Eagle Syndrome.
Possible related background: in about 2000-2001(?), when I was about 17, I had an emergency tonsillectomy. My tonsils were so swollen they were nearly touching. I also had a vein that was hanging down.
I also have a bulging disc in my neck (maybe 2 now). I’ve fallen off a horse before. I also fell during gymnastics when I was 11 or 12.
-Had tensor tympani myoclonus maybe in 2009 or so? Went away.
-have had prior IBS diagnosis and acid reflux
-something I’ve noticed is that I can always get a squeaking type sound in my left ear only while doing the jaw opening movement you might do to clear pressure in your ears.
In 2014 after a dental cone scan, my dentist told me I have calcified stylohyoid ligaments. He sent me to an ENT to look into it (Dr. Brauchle). At the time I wasn’t having any symptoms, so nothing was done.
For about 8 years I was fine, overall. I’ve always had seasonal allergies and my lymph nodes get sore/swollen. But I never had consistent pain until this year. I had Covid in late Dec. 2021 (I passed out and hit my left temple as I had a bump there for weeks), and then a bad case of food poisoning in Jan. 2022. Then in February 2022 (Feb. 7th) while working out at the gym with weights, I had my first noticeable pains under my left jaw/throat area. Just a note, I’ve been working out with weights for years and I’m athletic and healthy overall. While working out, it was an extreme pain all of the sudden, where it felt like my jugular or something was being squeezed. I felt very frightened. It also felt like it was possibly spasming. I was worried I was having a stroke or something. It calmed down a little and I think I was able to work out. From there it started happening while I was working out (Mondays and Fridays). So I stopped using weights after a few weeks, thinking that I might have pulled something.
In late February, I started getting the pain, even at home. It was localized to my left side only. I remembered having read about Eagle Syndrome and hearing about it in 2014 when I first had the cone scan. So I went back to my dentist (March 1st) and had him do another cone scan, which showed that my stylohyoid ligaments are still calcified and elongated. He thought maybe I was grinding my teeth and that could be causing the pain. He didn’t really think it would be ES as he’s only had one patient ever that had it (who had surgery and was better after, I believe).
I went to see Dr. Brauchle again, the same ENT I saw in 2014 that my dentist had recommended before (March 4th), but he didn’t really think much of it, as he pressed on the back of my tonsil area and it didn’t hurt me much(?), so he said it’s not ES. He ordered a CT (done on March 8th) soft tissue with contrast, which didn’t show any compression of arteries (a concern I had after the pain I was having from working out). But he never got back to me so I got the radiology results. His office finally called weeks later just to say the arteries weren’t compressed. And said to maybe see a neurologist. I decided not to go back to him.
Throughout March I only worked out without any weights, hoping that whatever it was would heal on its own. Still had pain and it became pretty much every day, not only when exercising. Throughout this time, having heightened anxiety and some depression about the pain. Also, Houston was/is having really bad seasonal allergies this year, and a drought. So I was possibly more issues from that.
In early April I had intense pain and chin tightness while/after doing some unweighted squats. This intense chin tightness (I think the digastric muscles) lasted for about six days straight. I stopped exercising. An urgent care doc online suggested muscle relaxers. I haven’t tried them yet, as I’ve also been dealing with issues taking medications (anxiety).
I went to an orthopedic doctor who did X-rays, only showing some bulging discs on lower neck (one of which I was aware of). He suggested trying a steroid pack, physical therapy, and/or MRI. He didn’t say anything about my stylohyoid ligaments. Thought maybe I strained a muscle.
I am now in pain every single day. Lots of muscle tightness under the chin and sometimes the pains are more only on my left throat/neck area and under the jaw. It feels like the muscles (digastric) are possibly pulling on my hyoid bone, and then sometimes the left side stylohyoid ligaments get tighter.
On my cone scan, I believe they are bilaterally calcified and elongated. But so far I’m only having pain on the left side of my throat and under jaw, as well as sometimes in the center under my chin.
I also noticed my symptoms and pain were made worse possibly from allergies and/or my cycle. During that week (April 17th-24th), I also had swallowing issues. But when I went to a PCP, she said could be from post-nasal drip, acid reflux from stress/anxiety, and anxiety. Thankfully those have not been as bad as I’ve been doing a saltwater gargle.
This is the most pain I’ve had consistently for this long. I have also dealt with anxiety/panic since I was younger (around 17), and this has been a struggle. Since late 2015 I’ve been dealing with agoraphobia, so that makes traveling out of Houston to see another doctor much more challenging. I’ve had kidney stones in the past, but this daily and nightly pain is really challenging. I’m trying to stay positive. Hoping to find a doctor(s) that will really look into it and hopefully provide relief.
I have an ENT appt. set up for May 10 with Dr. Donovan (listed on here as a possible surgeon for ES), hoping he will be able to help.
All on left side unless otherwise noted.
-when I was working out I had intense throbbing(?) type pain under left jaw area deep inside. I felt like it was squeezing my artery or something.
-nerve type sharp pains under left jaw area
-sharp pains in left front of throat area
-pains in different places below jawline
-intense tight under chin (middle) muscles(?) maybe digastric?
-one day I had random icepick type pains in head
-occasional left jaw clicking
-occasional swallowing issues where I feel like the food or liquid isn’t going down all the way
-IBS issues since mid-April (burping seems to sometimes alleviate some of the pain)
-have had some pain in my lower teeth
-occasional shooting type pains in the back of my neck where my neck and skull meet
-feeling like something is at the back of my left throat (I think on the back wall there seems to be a raised area, but the ENT and PCP didn’t notice it)
-had the sensation that my left side of my face was being pulled.
-have felt like I was being pulled to the left while walking one day
-occasional feeling like something sharp in back of left throat
-some pain when touching between jaw and ear area
-certain movements seem to make it worse (smiling, laughing, talking too much, turning to the right(?), having built up gas, left arm pulled up as if doing an upright row movement, bending forward and jutting chin out)
Thanks in advance for any input or advice on how to get answers and have doctors look into it more. It’s frustrating to go from doctor to doctor and them not look into it.
My symptoms seem to come in waves, or like they switch which ones are most prominent. For instance, right now, I’m having mostly a very tight chin area. Which is very painful and uncomfortable. More of a dull pull. But I’m also getting some nerve type pains around my left chin and jaw.
I’ve been trying to ice the area at night, and it seems to feel a little better (very slightly). When I go on walks, I often hold the cold water bottle to my chin, which maybe seems to help.
This is a very long post, thanks for reading it if you have!