Hi, all. It seems like my son’s symptoms are caused not by his styloid being necessarily long but but the ossification of his stylohoid. Anyone else have this scenario?
By his stylohyoid, I assume you’re referring to his stylohyoid ligament. When elongated styloids are noted it can be either that the styloid itself has elongated or the stylohyoid ligament which calcifies & is attached to the styloid making it appear elongated. The ligament is attached to the tip of the styloid & runs down to the lesser horn of the hyoid bone where it attaches at the other end.
We have members who only had calcification of their stylohyoid ligaments which causes a lot of the same symptoms as an elongated styloid (or styloid that’s elongated due to s-h ligament calcification).
What symptoms does your son have that cause you to suspect it’s his s-h ligament vs his styloid that is causing his pain?
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Yes the stylohyoid ligament has calcified.
He has altered sensations in his gums
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Altered sensations in your son’s gums is being caused by the trigeminal nerve being irritated by his calcified stylohyoid ligament. Getting that removed will help the nerve to recover & the sensation in his gums to go away. It’s been our experience on this forum that If there is bilateral s-h ligament calcification, having both removed may provide better long term results. Most doctors will only operate on one at a time due to post op swelling in the throat so most of us who’ve been diagnosed with bilateral ES have had 2 surgeries - one for each side. There is one surgeon on our Doctors List who routinely does bilateral removal in one surgery, & our members who’ve been to them haven’t had problems so that is another route to consider.
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Thank you so very much. You all are so helpful. I wish I would have found you all a long time ago! So much information. Thank you, thank you!
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The facial nerve can often be affected and this can cause lip droop, loss of sensation etc, it’s often irritated during surgery so we see members with this afterwards. The facial nerve has similar pathways, so could be the culprit otherwise:
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Does this resolve on time oftentimes?
Nerves can take quite a number of months after surgery to fully recovery but sometimes significant symptoms are gone nearly immediately after a styloid is resected. For example, among my symptoms, I had what felt like extreme pressure on the back of tongue & pressure behind my eye that felt like it was being pushed out of the socket from behind, left side only. These symptoms were extremely annoying. When I awoke from my left styloidectomy, those sensations were gone, however, I had other symptoms that took quite a bit longer to gradually fade away.
That’s to say that if your son has his styloids shortened, he could have some immediate symptom relief & have some that take a number of months to gradually disappear.
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Oh wow! I am thankful to hear about your relief!!
My son has had these issues for about four and a half years. How long did you have yours before surgery?
I hear maybe the longer you have the symptoms, the longer it takes to feel relief?!?
Did you have any further facial nerve irritation from the surgery…and if so, did they resolve in time?
By the way, Isaiah 40:31 is the verse my son has claimed to get him through this trial! 
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My ES symptoms started with choking on food (had an upper GI to see why but there was no answer). I also had some vertigo which was diagnosed as BPPV (positional), though I wasn’t initially diagnosed w/ any vascular compression as my diagnostic CT was w/o contrast. A year or two later I began having pain in the front of my neck on the left side of my thyroid. I eventually found a hard lump under the left side of my jaw which incited the neck pain when poked. My OBGYN referred me to an ENT after my PCP told me it was an infected salivary gland & Rxing antibiotics (which I didn’t take).
The symptoms I mentioned above developed after my first styloidectomy which was for my right styloid. My surgeon was adamant the right styloid come out first even though my left side was far more symptomatic. To answer your question, it was less than a year that I had my eye & tongue symptoms. Many of our members have had long-term ES symptoms which resolved over time post op. I would expect that for your son as well. I was 58 when I had my ES surgeries so on the older side. Your son is younger so should have a good surgical response if he sees someone who’s very experienced w/ ES surgeries & has demonstrated to provide good outcomes.
Fun that your son & I share a love for what Isaiah 40:31promises! I was a long distance runner when I was diagnosed, but can’t say that I’ve ever been able to run & not grow weary. 
That will come heaven side. 
Getting my styloids removed did restore my quality of life & for that I’m so very thankful!
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