I can’t find an answer to this question, if anyone could help I would appreciate it. Have there been any patients with ES diagnosis that didn’t have any neck or throat painful symptoms? My only throat symptom is clicking with talking and swallowing, otherwise no throat or neck pain. All the painful symptoms are in the head and face. Thank you in advance for any answers.
Hi Elena,
We’re all affected a bit differently by ES so I can safely say we have members who didn’t have throat pain. Where pain is depends on which nerves are being irritated by your styloids &/or calcified stylohyoid ligaments. In turn, which nerves are affected depends on how thick or curved or twisted or pointed your styloids are & possibly how long though length isn’t always the issue.
Clicking during talking & swallowing can indicate calcified stylohyoid ligaments as this condition causes them to tether the hyoid bone & keep it from moving as it needs to when you talk, swallow, cough, laugh, sing, sneeze, etc.
Symptoms in the face & head can be caused by your facial nerve &/or trigeminal & glossopharyngeal nerves. Headaches can be caused by the trigeminal nerve or vascular compression of either the internal carotid artery or internal jugular vein.
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Thank you so much for this response, and sorry if I already asked this question. It’s like my brain is requiring constant validation of the experienced symptoms 
I’ve been misdiagnosed with so many things that I probably subconsciously want to find things that don’t match the diagnosis. I need to keep reminding myself not to compare myself to anyone as we’re all different and present with different symptoms. I appreciate your patience with newbies like me.
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Please feel feee to ask any questions you have, share concerns or worries. We’re here for you through thick & thin, @Elena! 
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I didn’t have the ‘classic’ swallowing or throat pain symptoms, but had pain in my jaw & face, & the sides of my neck, plus ear pain & pressure. The symptoms do vary quite a bit with us all!
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Thank you for your feedback. I’ll keep reminding myself that everyone is different and not one patient will have the same or even any of my symptoms. It helps to learn from more experienced people. I appreciate all the information!
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My symptoms are solely in my head and referred facial pain. vascular eagles that did not respond to styloidectomy alone due to severe jugular stenosis based off gradient measurements. But just for guidance: constant never ending headache day or night , migraines all day, exploding stabbing pain in head, throbbing, and tongue numbness.
the eagles head ones seem to be less common I was misdiagnosed for a long time but it’s definitely coming from the internal jugular compression for me . Hope this helps and hope you get relief soon.
Awful that having surgery hasn’t helped…are you looking for further surgery, a C1 shave?
Im very sorry to hear that surgery didn’t help you. Did your surgeon explain this outcome? How was your jugular compression diagnosed, via CTA? I have constant headaches just like you maybe not as severe but sometimes they render me bedbound. I use Ibuprofen and Maxalt for them but most of the time they just take the edge off and never get the headache to go away completely. I get them in the frontal area, from cheeks to the eyes with pressure in the back of the head that gets worse when I lay down or lean back on anything at all. That’s in addition to left sided nerve pain in my cheek/teeth/nostril that seems to be triggered by turning head, talking, chewing etc. Have a consult scheduled with Dr. Hackman.
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Hi Jules. the ultrasound showed the jugular veins are open just so narrowed. So decompression wasn’t something to be done. I saw Dr. Fargen last week and had a 4 inch jugular stent on the left. Possibly a right in the future depending on this progress. I was very glad I had the styloidectomy as I can move my head a little since it and was necessary to be able to have the stenting. 6 weeks is waiting game for progress.
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I saw dr Hackman and he didn’t agree it was eagles and diagnosed trigeminal neuralgia. I respectfully didn’t agree so I went to dr Hepworth. I had been trying for a year for Hepworth since he does the most for vascular. he thought I would get 85% improvement from the styoidectomy. the two tongue nerves were wrapped around the styloid and connected to my jaw and they fixed that and removed scar tissue. He was meticulous and precise. You can’t even tell there is a scar. I’m very grateful for Dr Hepworth. I did have that test done and that was what no one agreed with for eagles except Hepworth immediately.
I just saw dr fargen another long wait but beyond worth it to get a 4 inch left jugular stent. I have to wait 6 weeks to tell improvement.
The lying down making you worse is how I am. I always want to be upright even sleeping. the pain in the back of the head is similar the frontal head I have come and go. I’m so sorry
You’re dealing with this. If dr Hackman doesn’t think he can help I highly recommend Hepworth and fargen. One thing that sometimes helps the frontal headache for me is a vicks vaporizer. I do it whenever the weather changes. It does help relieve that one area of pressure to just bad so I don’t feel so crazed from the pain. something you could look at maybe. I also always have a thermophore (moist heat only) on my neck and ice on my head together helps me tolerate it. the medication hasn’t helped me either nor the blood thinners so you’re not alone in that either. don’t give up hope I’m rooting for you!
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@Freedom - thank you for your update & I am sooo sorry that you’ve still got the IJV compression even after seeing Dr. Hepworth for surgery & subsequently Dr. Fargen. Did he say what he thought the cause of your compression is? So many people seem to have compression caused more by C-1 than by the styloid, I’m wondering if that’s your case as well.
I hope the stent makes a HUGE difference for you! IH is truly a nasty & debilitating problem.
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Thank you for the detailed answer and so sorry you were turned down by Dr. Hackman. I have been misdiagnosed with TN myself but consulted with 2 prominent neurosurgeons who specialize in TN and they both said it’s not Trigeminal neuralgia. I have seen probably over 40 specialists in different fields in over 6 years of this mess. I read some of your previous posts, I can’t imagine dealing with such severe symptoms while waiting long months for an appointment. I myself got to the point where I had to quit my job back in April as symptoms became too much for me to handle while working. Plus having little kids makes it even more challenging.
Thank you for the good tips and kind words. I hope your stent placement helps relieve your pain, sending you all the positive and healing vibes, keep us updated 
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I hope that the stent does help you, the symptoms you’re having sound awful…glad that the styloidectomy did help you a bit. Sending hugs & prayers for the stent to help 
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Hi ,I’m considering a jugular stent , I’ve had full decompression but it’s still stenosed from c1 down
May I ask has you are now since the stent
I really hope you have had some improvement
Many thanks in advance
Best
Phil
Australia
Hi Phil, I’d suggest you to check subclavian/thoracic outlet region first, unless it’s been checked, in upright position. There is a chance the compression is not only in the IJV but down the stream too, and the IJV compression is just the body’s adaptation to limited flow situation.
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Interesting study:
“Internal Jugular Vein Stenosis is Common in Patients Presenting with Neurogenic Thoracic Outlet Syndrome”
https://www.sciencedirect.com/science/article/abs/pii/S0890509614000442
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Hi
Many thanks , yes I’ve had this worked up and there’s no vascular TOS
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I’m sorry I didn’t see this sooner to answer you. well I wish I had better to report but I’ve had bilateral styloidectomies and 4 inch bilateral jugular stents and I had 3 days of less pain only from all of this. I’m going back for a 5th stent for the jugular. I hope to have better news then. To me the stent pain is minimal to go through to try to get any change in the debilitating pain. Dr fargen was who I have seen 4 times. Mine starts at c1 the stent. Depending on the mm of stent you can have severe shoulder pain and lose Strength in your shoulder I had it happen on one side but again I would prefer to have this and it’s manageable to me because the head pain is excruciating. That’s the biggest realistic concern with the stents by c1. the testing for it is very helpful to give you an idea if the stent would help how they measure the gradients and you can feel if it does or doesn’t recreate your pain during the test. It showed I didn’t even need decompression during the styloidecromy surgery but I had severe stenosis and actually had the right jugular completely close turning my head so the decompression isn’t reliable to me compared to the gradient testing. I’m sorry you’re needing a stent but I would recommend to at least try the testing for it and that could guide you to do it or not.
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