The pain now is in upper no dental work done there. I have been told this is Trigeminal neuralgia by neurologist it is not tooth. After trying a nerve medication for TN- Trileptal, I began having a lot of trouble swallowing. I stopped the medication and a few days later, I noticed clicking in my throat with dry swallows and with food it’s very consistent and if I turn my head sometimes I can swallow without the click.. I still feel like it is hard to get food down. Also hear crunching sounds by my ears, when I swallow. A few days later started having what I know now is Glossphyrangeal pain (electric in throat, tonsils and tongue) I went to see neurologist and he ordered a new (I had one 2 years ago) Fiesta /CISS MRI of brain and MRA of neck. I also had read about ES, so I told him, he ordered CT of neck with out contrast.
Would CT without contrast of neck be sufficient to show ES? I also have a recent CT with contrast of head -pictures I attached . Dr wrote in the order for neck CT to evaluate styloids and ES in CT of neck. I am doing MRI and CT at same appointment so I think Dr didn’t want me to have to get contrast twice? But I don’t want to have to come back and do another CT if the one he ordered isn’t sufficient.
Who should I see to look at imaging to say if it’s ES or HBS, I am in NJ /NYC area. I was going to call NY Dr C but does he diagnose?
Can someone on here tell me what the think from the Images I attached.
some symptoms :
new crunching in the back of my neck when I turn, I believe I have instability issues.
Left side nose runs randomly when eating or moving around
Click in throat when swallowing
Trouble swallowing /painful
Trigeminal nerve pain V2, radiates to temple and lower jaw left side
Glossphyrangeal nerve pain- seems bilateral
Tongue nerve pain
Some sinus pressure & headaches
Crunching sound by ears when I swallow
I am feeling overwhelmed! Trying to medicate the TN caused new GPN pain both are awful, I am on Gabapentin but it doesn’t help. So far the trileptal and other med Dilantin I tried made my swallow feel worse which makes me panic. So I am not sure why my swallowing gets worse with these nerve meds- they are seizure meds.
Any help or thoughts. I attached some images from my CT of head with contrast from this August.
Hi @DJflower33 - Welcome to our forum! Both of your styloids are quite long & the right one is pretty thick up at the top by the skull base. The greater horns of your hyoid bone also appear to be longer than normal. In your imaging, it also appears you’ve lost the natural lordotic curve in your neck which can bring the styloids & greater hyoid horns closer to nerves & blood vessels.
In this CT slice at C1, it appears your IJVs may be very slightly compressed between your styloids & C1. I’m not sure if it’s enough to be causing any problems especially since you haven’t mentioned any symptoms that we connect w/ vascular compression.
It’s my non-medical opinion, that with the symptoms you have, ES is a proper diagnosis & getting your styloids resected as close to your skull base as possible would be good. You can certainly contact Dr. C’s ofc & send in your CT images for an opinion.
I don’t think you need to get any more scans. Stay away from MRI contrast if possible as it’s contains gadolinium which is a heavy metal & has caused some people big problems sometime after the MRI.
The MRI of head and MRV of neck was to be used to see if the Trigeminal and Glossphyrangeal nerve are compressed at all since I have GPN in addition to TN. I have an appt with neurosurgeon to look at compressions, I wanted to get new images of Trigeminal and Glossphyrangeal my last Trigeminal MRI in 2022 I didn’t have GPN nerve involvement .
Should I still get the CT scan without contrast of the neck will it be helpful, to measure the styloids for the dr or to look at & help determine why I have clicking in my throat? The CT scan with contrast that I attached images, I had over the summer was for purposes of looking at my jaw/ salivary glands.
Would fixing the styloid help the Glossphyrangeal & Trigeminal nerve pain I have? The GPN I feel is bilateral and TN pain is on upper left side radiating to lower left.
The clicking I feel in my throat if that is HBS would that cause bilateral GPN? I also have difficulty swallowing.
Does anyone here have a doctor near NY or NJ for the clicking throat? I tried Dr Cognetti but he is booking in July!
ES can cause GPN & TN, they’re both often affected. We can’t say for sure, & no doctor will guarantee that surgery will fix them, so unfortunately really the only way to know for sure is to have the surgery & see…Looking at the path of the glossopharyngeal nerve, it runs down past the hyoid I believe so could be causing the pain…
I don’t know that the meds are causing your swallowing to get worse, we haven’t heard of that happening before so maybe it’s just a coincidence? It could just be that your ES symptoms are getting worse.
Dr Costantino would be good to see for ES, but there aren’t so many doctors that we know of who treat HBS, but Dr Coniglio, Rochester might be a good doctor to see, John U. Coniglio, MD | Rochester Regional Health does hyoid bone surgery & works with Dr. Taka Higashimori for VES and C1 shave, also does hyoid trim if needed, Dr. Taka Higashimori,
Dr Dewan in LA is another doctor who does HBS surgery.
Dr. Karuna Dewan, Ochsner LSU Health Shreveport - Academic Medical Center - Specializes in Hyoid Bone Syndrome surgeries
1541 Kings Hwy, Shreveport, Louisiana, 1-318-626-0050 Karuna Dewan, MD | Ochsner LSU Health Needs a PCP referral.
I don’t think you’d need any more scans for now, the CT you’ve uploaded here shows the styloids fine?
I am planning on going thru with MRI for the neurosurgeon . so maybe I’ll hold off on the CT of the neck then.
I also have a lot of crunching and a new click in the back of my mid neck when I turn very recently. I think I am hyper mobile my son has been diagnosed. Would that have any impact on anything?
ES seems to be quite common with hypermobility, some believe that the styloids calcify & elongate more to stabilise the neck, but @TML made some quite logical suggestions of the opposite in this post: Is this JVC or could it be CCI? - General - Living with Eagle
Some doctors are wary of doing the surgery because they worry that it might make instability worse, and some members have felt that it has worsened their CCI, but others have noticed no difference at all.
So the GPN started when I started having clicking and trouble swallowing after trying Oxcarb- Trileptal for the TN. So it was trouble swallowing from meds, clicking started, then GPN started.
SO for my order of doctors to investigate should I start with Dr C in Rochester for HBS
Also, Do I need CT of neck to view if thyroid cartilage or anything is wrong to diagnose HBS ?
@DJflower33 - Neither @Jules nor I believe you need another CT scan at this time. If the doctor you consult for ES requests another one, that would be the time to get it done. The CT w/ contrast shows your styloid & hyoid bone just fine. Your thyroid cartilage also appears pretty normal.
As Jules said, the trigeminal & glossopharyngeal nerves are two of the cranial nerves most commonly irritated by elongated styloids/hyoid greater horn elongation so there’s a good chance that getting your styloids & hyoid greater horns shortened would reduce or eliminate the symptoms you have from them.
Unfortunately, I recall one of our members saying Dr. Coniglio may have retired. It’s worth calling his office to check for sure. Dr. Cognetti in Philadelphia also does hyoid bone surgeries, but he’s booking in July '26 for initial consults. Dr. Dewan’s office seems to be very slow to reply about an appointment once you’ve contacted them which can be frustrating. We have the name of doctors in Utah & California who do hyoid bone surgeries, too, but that’s getting pretty far from home for you.
