New diagnosis story...thankful for community

Hi all! I’m so glad I found this group! I have been dealing with stabbing throat pain when swallowing since back in October (which I know is not long compared to some people here). At first, when it didn’t spread beyond the one spot or come with a fever or any of the normal things that accompany a sore throat, I figured I’d wait it out and it would go away or see if there was a tonsil stone there. Neither of which happened. So I went to my PCP who put me on antibiotics, then a round of prednisone, and still nothing changed. If anything it got a little worse. So then she sent me for a CT scan, mainly to rule out some kind of tumor. The CT report only focused on my tonsil and lymph nodes so there were still no answers and I was referred to the ENT. After going through a full exam by the ENT (including a very unpleasant scope), I mentioned that a CT had already been done of my throat. As he already suspected Eagle’s syndrome, he specifically started looking through the scans for signs of it and found what he was almost certain were signs of calcification on a large portion of the stylohyoid ligament on that side of my throat. He has since conferred with two different radiologists to confirm his findings and determined that the other side also has some calcification occurring. I won’t meet with him again until the middle of February but it’s clear from his notes from my consultation that all he can do here is pain management. I also live in Montana, so big cities are far away no matter which direction you go so this whole situation has been a bit overwhelmed which means significant travel regardless of which doctor ends up treating me. I already deal with migraines and cluster headaches as well as depression/anxiety which can make life pretty challenging. Then just in the past couple of weeks, I have started experiencing nearly daily milder headaches that resemble migraines but don’t get as severe (I have a sneaky suspicion they’re related to Eagle’s) which just adds to the throat pain. I have some good friends and church family that are supporting me as best they can but they also can’t imagine what it actually feels like. Just reading some of your stories and advice has already brought some hope in the midst of a really challenging month. Thank you for being willing to share that with people like me!

1 Like

Hi Becc87,

We have another member who lives in your state who had ES surgery in Dec. w/ Dr. Hepworth in Denver. If you’d like to ask her some questions about her experience, her screen name is @Eagle1
search for a post she’s written & click on her screen name or the avatar above her post & that will take you to a page where you can start a private conversation with her.

As far as your migraines & new headaches go, they may all be related to ES. Migraines can be a symptom of compression of the internal jugular vein (IJV). We have a number of members who have suffered w/ that form of vascular ES. Getting the styloid pressure off the IJV makes a world of difference & many people’s headaches have gone away (@blossom is another member who had surgery done by Dr. Hep & has had good recovery from vascular ES & migraines).

As far as your more low grade headaches go, they could be coming from your trigeminal nerve. This nerve has three branches in your face (picture below) & can cause headaches, eye pain, nose pain, pain in your teeth, ears, TMJ joint, etc.

We did have at least one other member from MT who went to Nebraska for ES surgery & saw Dr. Coughlin, I think. I can’t remember that person’s screen name, but you can use the magnifying glass search tool & type in Dr. Coughlin & posts will come up where his name is mentioned.

3 Likes

Hi & welcome to the site! Isaiah has already given you good info, so can’t add more to that, just to say I’m glad that you have some support, & we’re always happy to listen here too. I hope that your ENT can help with pain management in the mean time & that you’re able to get treatment soon. Sending you a hug :hugs:

1 Like