Hello everyone! I believe I have ES. Here is my story

Hello everyone!

I’m new to the group. I believe this forum helped me determine I most likely have E.S., so thank you everyone. I have not been diagnosed with E.S. yet, but I do have an appointment with Dr. Annino in Boston, Ma in about a month. I am beyond looking forward to it.

Here is my story…

I was rear ended by a trailer truck going about 70mph on a major highway in Massachusetts. My head hit the headrest hard. I was dealing with my pretty intense symptoms by day 2. My neck/head were very messed up. I did not go right to hospital the day of accident. I saw chiropractic care for original treatment. My pcp gave me an X-ray. Chiropractor does not not help. I start to have more strange symptoms and beg for MRI. They find only degenerative issues. I’m still in pain after 3 months, but my neck does seem to be feeling a little bit better. I then have shoulder surgery. The way they propped my head back caused my neck/head to hurt worse and I start PT. It helps at first, but ends up making it worse. On two occasions I felt something awful happen inside my throat/neck area. Both from talking. I then try Accupunture. It doesn’t work. I beg to be looked at further. My pcp and a neurosurgeon notice my styloid ligament is calcified, they send my images to an ENT who says it looks fine, and I probably need neck surgery to remove bone spurs, but 3 neurosurgeons say I do not. I start researching the possibilities of what could be going wrong with styloid ligament, and notice my symptoms are so similar to so many others. I believe my ES worsened from the accident. I had zero symptoms before. I beg my pcp for CT scan but they do it wrong and my pcp cannot find ES because she can’t see that part of my throat/neck. She believes the radiologist did it wrong, or they can’t see it. She refers me to Dr. Annino per my request (thank you for listing doctors!!) It’s been 8 months since my accident. I’m a dance/yoga instructor and I can’t move. I would move 3-6 hours a day before. I pray Dr. Annino can help me.

Here are my symptoms.

*choking/strangulation feeling in left side of throat. Worse with correct posture. Worse when neck is inflammed. So uncomfortable everyday.

*turning head and picking things up weighing over a lb or so causes immense pain around ears, jaw, back of head. I believe it’s nerve pain.
I immobilize myself and don’t move my head/shoulders too much. I don’t fold my own laundry or carry groceries because I’ll be in excruciating pain.

*dizzy episodes everyday for past 4 months. Sometimes I come very close to fainting but sit down. It often happens when I left my head up too fast.

*I can’t talk for long period of times or I have similar pain episodes as above and jaw pain.

  • Some days are better than others, but it’s not often I have good days. If I’m very careful I can manage pain.

*vison problem in my left eye one occasion. A black horseshoe shape was covering most of vision in my left eye for 30 minutes.

*there are other random symptoms that are not all the time. Like headaches and nausea.

Let me know your thoughts or if you’ve had similar symptoms and experience.

Thank you!

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Hi GinaM - Welcome! We’re so glad you’re here so we can help you along your diagnostic journey.

You’re right that your symptoms are those seen w/ ES, & it sounds like you suspect you had that ligament calcification prior to the accident, but it wasn’t causing any problems. I agree w/ that. It’s thought that there are many more people w/ elongated styloids &/or calcified stylohyoid ligaments who don’t have symptoms than there are that do. Lucky us to be in the minority, eh?!

From your symptoms list, I’d guess your facial, trigeminal, glossopharyngeal, accessory & vagus nerves are being affected at the very least. Having very tight muscles in your neck & shoulders (which can result from a whiplash type accident) can also cause the types of nerve pain you’re having though I just suspect they may just be contributing to your pain or intensifying it not causing it.

I’m sorry for how much you’re suffering & especially that you can’t move as you’re used to due to pain. I really hope Dr. Annino supports the ES diagnosis (a calcified s-h ligament that is symptomatic is considered to be ES) & is willing to remove it. He has a lot of experience w/ ES so he’ll be a good resource for you. In the meantime, please know that we’re here to support you & answer questions you may have.



Thank you so much. I will post an update after my appointment.



I hope that you get some treatment when you see Dr Annino & that you don’t need further CT/ tests…if you do it might be worth asking for one with contrast as dizziness can be caused by vascular compression- although it can also be caused by the nerves to the ear being affected too. The vision problems could be too, have you see an ophthalmologist?
I believe a whiplash injury caused my styloids to enlarge- I was passenger when we went into the back of a lorry, nearly 30 years ago, & have had pain since then, although the ES symptoms didn’t start for a few years, unlike yours. I had traction & manipulation treatment too which was agony!
Hang in there until your appt!

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