Advice/Experiences Needed

Hi all,

I’ve recently gotten a CT scan of my neck and they’ve found ossification of my stylohyoid ligament (3.9 cm on the left and 4.5 cm on the right). I am a 22 yr old male who is about to start work in a month and a half.

I got this CT scan cause I’ve been having burning pain in the base of my throat only on the right side since the start of 2022 (and have had very random flares ups on intense pains that have gotten worse over the past decade). This pain occurs within a few minutes of talking and can make swallowing uncomfortable. Most ENTs I saw for this told me they didn’t think I had Eagle’s Syndrome since I had no pain in my jaw area.

I am just wondering if anyone else with ES had this sort of pain near the base of your throat (near the thyroid)? I was hoping that this pain isn’t caused by ES and I just happen to have longer stylohoid ligaments.

However, I’ve also recently started getting sharp pain when swallowing food on the back left side of my mouth/throat which seems to be where I would get pain with ES. It’s driving me crazy and makes me no longer want to eat. I’m just confused in general about all this throat pain. My ENT takes forever to respond and I’m terrified of surgery, which seems like the only option.

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Hi @sysrup! Welcome to our awesome forum!

I’m sorry for the symptoms you’re having, but unfortunately, they do sound like ES symptoms. Elongated styloids/calcified stylohyoid ligaments can cause compression of up to 6 of our cranial nerves. The ones that seem most often to be affected are the glossopharyngeal (GN), trigeminal (TN), facial, & vagus nerves. Both the GN & vagus can cause throat pain w/ the GN being most likely to be the perpetrator. 2-Minute Neuroscience: Glossopharyngeal Nerve (Cranial Nerve IX) - YouTube

Our moderator, Jules, wrote a couple of long, but very thorough posts about ES symptoms & it’s worthwhile reading them as they will help answer your questions about symptoms. As scary as surgery may sound, in general, it’s very successful & that throat pain you’re suffering with would most likely go away once your styloids are removed. Dr. Samji in the San Jose area is one of the most experienced ES surgeons on our Doctors List. It would be worthwhile contacting his office to see about either an in person or video appt w/ him. He will want a copy of your CT scan on disc & the written radiology report before he’ll commit to seeing you. He did my surgeries in 2014 & 2015 which turned my life around as my symptoms were pretty debilitating.

I hope this info is helpful for you.

Thank you for the response and the links to more information, they have been very helpful. Do you know how treatable this is without surgery? E.g. muscle relaxers, steroid injections, etc. It seems like from what I read surgery is the definitive treatment, but are you or anyone else aware of people who end up living without pain from just medication? Thanks again!

We have a few members who’ve had good results w/ nerve pain meds & a few who had some good longer-term results w/ an ultrasound guided lidocaine/cortisone injection into the tonsular area, but most of our members have ultimately needed surgery to reduce or stop their ES symptoms,

The disadvantage of postponing surgery is that the affected nerve(s) will continue to be irritated which can lead to permanent nerve damage over time, & the styloids can continue to elongate which means they’ll likely bother other nerves,& your symptoms will become worse & more diverse. That said, surgery is a very personal decision & trying other methods first is a fine approach. The general consensus on this forum is that surgery is necessary when your lifestyle becomes so impeded by your symptoms that you can’t live as you would like to anymore.

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Also it is extremely important to emphasize that the surgery is not always a 100% cure, and in some situations, especially if performed incorrectly, can make symptoms worse or bring a lot of new symptoms.
So even with the surgery, it’s vital to choose the right surgeon.

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@vdm has spoken notable truth based on experience. It’s no fun facing revision surgery when a surgeon hasn’t removed enough of the styloid(s) &/or calcified stylohyoid ligament(s).

I see, these all make sense. I’m about to start my job next month and am just worried I won’t be able to perform well and communicate due to just being in pain.

On the off chance has anyone experienced going through the UCSF system for ES? I am scheduled to see one in 10 days and have been told by a referring ENT that UCSF should have specialist for all kinds of disorders like ES, but I didn’t see any listed on the forum post with ES doctors. I will try going to Dr. Samji as well once I get my a hardcopy of my CT scan, though it was taken with contrast so I hope he will still take it.

I would cancel your appt at UCSF as there currently are no doctors there that treat ES. We’ve had other members w/in the last 6 mos to a year who saw doctors there & were told “no go” no one there does the surgery. We did have a doctor on our list at UCSF when I joined here in 2014, but he has since stopped doing ES surgeries. I’m sorry for the bad news.

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