Hey everyone! I am so not happy to be dealing with what I highly suspect is ES but am SO happy to have found this forum. What a wonderful resource in the face of such a rare and confusing syndrome.
A quick intro to me- my name is Lauren, I’m in my early 30s, have always been very healthy, was very into weight lifting, am a creative type and use my dominant arm and voice heavily for a living. All that has been interrupted and I’ve been completely unable to work as my throat and right arm have been highly effected by what’s going on.
How it started- perhaps the silliest backstory you may come across on here. My symptoms came out of NO WHERE this past September, four months ago, a day after I spent hours in a contorted position trying to pick ~150 splinters out of the back of my leg. I even asked my partner to push my neck down further so I could try to see better (he tired to get them out himself but I stubbornly took over after a while). What a huge mistake this was. I was twisted with my neck looking to the left, and as far forward and down as possible. The next day, I noticed a very weird sensation where I now can assume was my stylohyoid ligament on the right side of my throat. This sent me into a panic because the only thing I could think of was that I was having a stroke and I spiraled into some major health anxiety. This was also the same day my sore throat began, but I attributed it to smoke in the air at the time from CA fires.
Despite the anxiety and a lot of symptoms that came along with just that, I knew something was still genuinely wrong, and it only got worse after I saw a chiropractor two weeks later. He gently twisted my neck while I laid on my stomach, and when he pulled to the right side, it felt very different to the left- resistant and not right. After that, my symptoms got five times as bad. I had extreme neck tension, especially when I spoke, felt like my throat was closing up, arm pain went from a slight symptom to debilitating.
Many things ruled out, countless nights googling symptoms, dozens of anatomical diagrams, thousands of dollars in band-aid type treatments, 2 diagnoses, 15 different doctors and specialists later, I strongly started to suspect ES was actually the root of the problem. (For reference, I was first diagnosed with Muscle Tension Dysphonia, and then a hive condition which I will more so assume is anxiety related).
Just before the new year, I got a CT scan with and without contrast which confirmed that I have elongated styloid processes (to my surprise, on both sides- 33mm and 32mm) and ossified stylohyoid ligaments on the upper portion. The ENT that’s been seeing me would not diagnose me with ES, however, as he’s never seen a case of it in his 30 something years of practice, and told me to get a second opinion.
That’s where I am today. I’m in the process of finding an ENT I can see who has seen ES before. I’m still unable to work, I just started to do light cardio again and I can’t believe how much my life was turned upside down overnight. It’s hard not to look back and think about how much I took feeling ‘normal’ for granted.
Some of my most prominent symptoms (almost entirely on the right side of the body)
- chronic sore throat
- dull but intense right arm pain/weakness
- base of skull, neck, traps, chest and shoulder muscular pain
- hoarse voice, strain/running out of air quickly when speaking
- sometimes headache only on right side above eyebrow
- feeling of right eye “pulling”… it may just be dry, but it feels… slow compared to the left
- jaw and occasional shooting facial pain
- ear pain
- mild blurry vision
- sometimes pain at salivary glands under tongue and near back teeth
- easily excitable heart rate from mild activity (getting up and walking across the room- this has persisted even as my mental anxiousness has relaxed over the months)
- heart palpitations that seemed linked to head position (cardiologist cleared me, could be more anxiety related)
- pulling and poking sensation in right side of stylohyoid complex area depending on head and spine position
- occasional muscle spasms under my chin (I believe this is the tongue based on what a speech therapist told me)
- Have had slightly low BP
- difficulty swallowing, particularly with getting good contact from the back of the tongue (this has led to some issues with choking on food more easily, as it sometimes feels like it gets stuck at the top of my throat and can’t be pushed down)
There are more but they come and go and this is what’s coming to mind first. I’ve had two concussions earlier in my life. One from a car accident at 17 (but was hit from the side and not sure if I had whiplash), and one in 2019 from falling and hitting my head (which probably mimicked whiplash much more). But all symptoms came overnight this past September.
Really hoping to avoid surgery, as I’m terrified of permanent damage to something like the trigeminal nerve. So far the only thing that has significantly helped is getting my c1 (atlas) adjusted by an upper cervical chiropractor using the Blair Technique. I’m not sure why this is, but after an adjustment my arm pain goes away as does a lot of my muscle tension in my neck, back and traps. It’s like I’m creating space between my transverse process/c1 and taking some pressure off whatever the elongated styloid process is probably pushing on). I can tell when I’m out of alignment because the arm pain and jaw pain comes back first. I thought the atlas misalignment was my true issue for a while, until even after adjustments, the poking and pulling sensation in my throat, and sore throat persisted.