Edit to add: after looking around, it seems my next steps are to get a CT scan, and next contacting a doctor, I am thinking Dr. Osborne in CA at this point.
Hello everyone! I am so grateful to have found this page. I have been reading through the posts and already feel more knowledgeable and less alone! For years I have been trying to explain this weird pressure/pulling/poking feeling in my throat, “like being mildly choked from the inside” - met with sympathetic looks but also “wtf?” haha. Hard to explain!
I recently found some folks to help me with my TMJ, which I thought was going to solve everything, and in a way it has, because through that process we did a CBCT scan and they pointed out that I have a calcified stylohyoid ligament. Ok, I did not know this was a “thing”! Explains a lot.
So far, my main noticeable issue is the “poking” sensation, ear pain, TMJ pain, shoulder pain… and a general list of various things that I’m just now putting the pieces together to understand. Luckily, for now, my symptoms are fairly mild - I do believe that is partially because I have really slowed down my life. I’m not living the way I used to, and some of that is good, but I’m just really seeing how much my life has shrunk, due to needing more rest and not able to function without flaring up more pain. My heart goes out to those who are experiencing such intense pain and symptoms.
I am wondering if anyone has tips for me for my next steps? My TMJ dentist gave me an ENT referral - it sounds like he has done the styloidectomy before, but I’m not sure if he is deeply familiar with the syndrome. Thanks to this forum, I am seeing that that is very important as there is a lot to be aware of and check for beyond just removing the ligament. I want to make sure I’m working with someone who “gets it”.
I currently don’t have medical insurance either, so I am considering how to work with that and I want to be mindful/prepared as I decide who to talk to and what testing/imaging to get. I would appreciate any insights and thank you for reading!
Welcome @Jem! You are going to get a lot of good advice about doctors and everything Eagles related here… so sorry you have been dealing with those symptoms!
Hi and welcome!
It’s a shame you’ve had to slow down & restrict things in your life, I think we’ve all been there and had to ‘manage’ symptoms this way, so it’s good your being proactive and are taking the next steps to get diagnosed!
A consult w/ Dr. Osborne will be a positive step toward getting a diagnosis. He will be helpful for you.
These are symptoms caused by the styloid causing irritation to several cranial nerves.
Do you know if the ENT to whom you’ve been referred is on our Doctors List? Here’s a link to a post about surgery. In the middle of the post there’s a list of questions we recommend you ask any doctor with whom you have an ES consult:
Next step is getting a CT scan w/ contrast of the area between skull base & hyoid bone or collar bones. Get 2 copies of your imaging on CDs before you leave from your appointment.
After that choose a couple of doctors with whom you’d like to have an initial consult & send them your imaging (check w/ their offices to see what format they want it in before sending anything).
You can also upload it on your computer & convert it to 3D using radiantviewer.com (for PCs) or Bee Dicom Viewer App (for Macs). 3D conversion will help you better see what’s going on in your neck & you can upload a few images here & we can comment on them as well.
In the meantime, you can try icing your neck for 15 min several times/day using a thin cloth between skin & icepack to prevent ice burns. If you buy gel packs that can be both frozen & heated, you can also try heat to see if that helps more than ice. OTC lidocaine patches (5% lidocaine) have been helpful for some members when applied to their necks. Rx strength lidocaine patches (10% lidocaine) are also available. Nerve pain meds such as Gabapentin, Amitriptyline & Carbamazepine have been helpful for some members in reducing the symptoms caused by nerve pain.
If you’ve noticed that symptoms flare when your head is in particular positions, try to avoid those positions.
I hope you’re able to get referred for a CT scan soon so you can be on your way to finding out whether or not you have ES.
