So I’ve had ES all of my life with many many symptoms 2 years ago I had my left styloid removed as well as a hyoid redaction. Unfortunately I’ve seen little to no relief from this surgery. The surgeon noted that the passage that the 3 nerves pass through may have been too narrow. Recently my jaw pain has been getting worse leading to migraines and inner ear pain. Now I’m starting to lose my balance when I turn my head either way. If I’m walking and turn my head either way I start to fall in that direction but its only slightly and isn’t happening all the time. I’m unsure if this is related to ES or I might have some other issue and I’m wondering if anyone can speak to this. Thank to everyone for helping.
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@Rickstarbird - I’m sorry you haven’t had much symptoms relief from your surgery. Were you diagnosed w/ bilateral or unilateral ES? If bilateral, are your symptoms on the side that has not been shortened or on the side that’s already had a styloidectomy/hyoid redaction?
Do you know which 3 nerves the surgeon referred to?
Jaw pain leading to migraines can be an indication of TMJD but can also be caused by the trigeminal or facial nerves which can be irritated by ES. The trigeminal nerve can also cause pain in the TMJ area along w/ other nerves.
Unfortunately, there are a number of possible causes for dizziness. The ones we most commonly see on our forum are 1) BPPV - benign paroxysmal positional vertigo (Benign paroxysmal positional vertigo - Wikipedia), but you’d really need to see an ENT for that diagnosis. 2) Vascular compression when turning your head one way or the other. That would need follow-up by a vascular or neuro surgeon & would most likely require additional tests w/ a dynamic ultrasound to look for blood flow changes in your IJV or internal carotid artery (ICA) w/ head turning, being the least invasive & an angio/venogram being the most invasive. CTA/CTV or MRA/MRV both which require contrast would be in the middle.
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I was diagnosed with unilateral ES and my symptoms are mostly on the side of my surgery. My glossopharyngeal symptoms continue to get worse everyday. Tingling sensation sometimes burning and extreme bitter taste. Tons of jaw pain and tooth sensitivity, I’ve basically stopped using that side of my mouth. He was referring to the glossopharyngeal the accessory and Vegas nerve. I have a lot of accessory nerve pain (on both sides) and cannot hold my arms up with out pain and that is also getting worse. Also I have a lot of undiagnosed pain in my abdomen which I’ve associated with Vegas nerve irritation. It’s felt like a string was tied to tight from my pelvis to my sternum basically all of my adult life. I don’t really suspect any vascular compression because 1 the symptoms don’t really match and 2 both the hyoid and styloid have been redacted but I could be wrong. So if my glossopharyngeal symptoms are getting worse I’m assuming that inflammation is being passed to the trigeminal nerve?
If you’re able to get a new CT that might be helpful- sometimes the styloids can grow back after surgery, so that’s one possibility. Otherwise you could have scar tissue which could be irritating the nerves too. There are small openings in the base of the skull where nerves and blood vessels exit; the styloids are very close to the jugular foramen, so I wonder if yours is very narrow & that’s what your doctor is referring to? But it’s also worth considering that if the styloid wasn’t shortened very close to the skull base it could be affecting the nerves where they exit. The trigeminal nerve is in this area too so could well be getting irritated as well, and also I believe the vestibulocochlear nerve which can affect balance is commonly affected by ES .
We’ve had some discussions about scar tissue & cold laser therapy which can help, so might be worth looking into this, & if you were to get a CT it could shed light on what’s causing the issue. There are special MRIs called FIESTA MRIs which can show nerves better, Idk if you could get a Neurologist to refer you for that, as this might show if it is the foramen which is causing the issues rather than any remaining styloid?
So sorry that the surgery hasn’t helped you, no fun going through this is you’ve got a family to be taking care of 
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The surgeon got as close to the base of the skull as he could but had to stop short because my blood pressure kept dropping. He did say that the angle may have been crowding the nerves but since I’ve had no relief since surgery I’ve assumed it was due to the narrowing. I have had a CT and 2 regular MRIs in the last year with no results. Thanks for the info I’ll look into the other tests and treatments.
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Hi @Rickstarbird - I’m sorry you are experiencing this and that it was not resolved by the surgery. I had the same issue on both sides, with long styloids on both sides. Mine improved with my first bilateral surgery, but then started happening again about 2 years later. I had another surgery, removing both styloids to skull base, which resolved that particular symptom. I still have some residual imbalance and mild oscillopsia, but at least I am no longer running into walls🙃. Check medications - prescription and OTC - for oto-toxins. Many medications, even aspirin, can damage the little hairs in the vestibular system, which can make balance issues worse. None of the many doctors I have seen over the years have correctly identified a cause, but it was definitely styloids rubbing on the wrong nerves or blood vessels causing my positional imbalance problems. Styloids don’t have to be too long to cause problems - second time around for me, I had a fat, angled styloid that was just 3 cm long, squishing the IJV against C1. If I turned my head while walking, my body would follow, whether I wanted it to or not.
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Thanks for the reply and all of the advice. Definitely an uphill battle and sounds like I need to be diligent in requesting more tests and treatments. It’s exhausting but I guess we have no other choice.
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I’m wondering how to tell if the styloid is growing back? Dr Annino said he cut back as far as he could to the base of the skull but I have no idea how close because I didn’t get any scans until over a year later. The last MRI I had stated they could see the styloid was truncated but how would I know if it’s longer that after surgery.
It would be interesting to see the CT you had this year if you could get a copy of the images…
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@Rickstarbird, Comparing the CT before your surgery to a more recent one would give you an idea of how your styloid has changed since surgery. Also another consult w/ Dr. Annino w/ the new CT in hand could provide productive discussion regarding whether or not your styloid may be causing your current symptoms.
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