Hello all. I’ve been reading a lot of posts and info. This is a great forum. Today has been especially rough…symptom wise. Feel like I could use some support.
I have yet to be diagnosed with anything having to do with my latest round of symptoms. Though many dentists have suggested that I do have TMJ issues. Back in 2019, one dentist told me he had never seen such a long styloid (of mine) that could be seen in a panoramic x-ray. That’s when I began researching Eagle’s Syndrome.
During the past 30+ years, I’ve undergone root canals (sometimes twice) in everyone of my top teeth. At present, I have an upper denture as they were also pulled one by one. I still get random pain in teeth and even where teeth used to be.
Fast forward to last year. I had a tonsillectomy in June. Ever since, jaw/facial problems have tripled in number and intensity. The pain can be off the charts. It’s basically made a home on the left side of my face/jaw. I’ve recently started getting tingling sensations in my chin, nose, and left side neck area. Just about the worse thing is the feeling that something is continually stuck in my throat!!! My taster is on the fritz. It got better for a short while. Now not so much. The last couple days, I’ve been getting headaches ..pretty intense. Then there’s the feeling of having difficulty breathing. Today, my stomach has decided it doesn’t like me very much.
On top of all this, I cannot find a local ENT to see me. I really don’t have a general Dr either.
Believe me, I never give up. I’m almost at my breaking point.
Thanks, in advance, for getting through all this. I hope it makes sense.
Hello Astaria. Im Sandys_Mom and Im new. I have my surgery coming up April 14th. First im like you i think. Lots of pain. Symptoms that i dont know if go with all of this. Headaches, ear pain, loud tinnitus, many other issues that have gone on since 1980.
@Astaria -
I’m sorry for the symptoms & unbearable pain you have & especially that you haven’t been able to find a doctor to help you. Your symptoms could all be caused by the elongated styloid the dentist noticed in 2019. The pain in your teeth, TMJ & headaches could come from an aggravated trigeminal nerve as could the facial (chin & nose), but the facial nerve could also be involved. Your neck pain is likely from an irritated spinal accessory nerve. The vagus nerve can cause the feeling of something stuck in your throat along w/ your stomach issues & breathing difficulties. These are nerves that are commonly negatively affected by an elongated styloid or styloids.
Here are pictures of where some of the nerves I mentioned “live” in the body:
Many of our members have had to travel out of the areas where they live to see a doctor who is knowledgeable about ES & does the necessary surgery to help relieve symptoms. Do you mind sharing what state you’re in, & I will be happy to give you some doctors’ names who may be somewhat close to you. Also here’s a link to our Doctors List so you can do some checking:
Im so new i dont even know how to type or use this thing.
Where are you planted? Im still growing in Ohio. For a short time i grew in NW Pennsylvania. The thing in your throat does it feel like an ice pick stabbing you and twisting? Thats how i feel? Often i dont feel like eating.even though i dont want to eat believe it or not ive gained weight. I have some issues that i know are not related also. .do you try not to cry? Thats what id been doing. Id be goofy tell jokes, silly stories and try to keep others smiling. Last week i broke down and fell apart.
Astaria, if i could, id reach and give you a big hug. I crave human contact. My husband is ill too.
I have 2 great ENTs. One is in Rochester NY The other is on staff at the Ohio State University. Both are wonderful.
I had a rough morning at church. I was chatting with a lady. The next thing i knew i heard myself say "I’m going down " people came from everywhere bringing a chair, damp cloths, water to drink, and the Pastor. I had started to black out. That is another “fun” thing ive been doing.
Ive rattled on too long. Its great to have this group to chat with. I wish i could help you more. Im just too new. I have not even seen any of my own scans or anything. Please feel free to rant, rave or screem at me any time. You can also pray if you like. You really dont have to if thats not part of your belief. May i pray for you? Please tell me no if you need to.
Thank you so much for all the info!!! I appreciate it more than you know!
I live in Northern California near the Oregon border.
Tomorrow, I’m going to ask the family nurse practitioner that I’ve been seeing to get me a referral to see an ENT specialist out of the area. I would really like to go to UC Davis.
Hi @Astaria , & welcome on here!
I didn’t have the intensity of pain that you do, but has pain in all the branches of the Trigeminal nerve, mainly in by teeth though. I had unnecessary dental work done because of toothache, when it was the TN pain, sounds like you may have done too! There are nerve pain medications which can help- like Gabapentin, Amitriptyline, Carbamazepine, taken in low doses, so worth asking your NP if you can try one of those- they don’t always work straight away as they take time to build up, & it can take a bit of trial & error to find one that works for you, but it can help. Heat or ice on the affected areas can help too, & some members have found topical lidocaine cream or patches which have worked for them.
I hope that your NP agrees to refer you to an ENT with more knowledge of ES
@Sandys_Mom21 - To start a private message with @Astaria, click on her screen name as it appears above one of her posts. That will take you to a page where you can start a conversation between just the two of you.
Hi there @Astaria I just wanted to send some positive energy your way
I wish you the very best today and an ease of symptoms
I am so glad your reaching out for advice
We have so many great knowledgeable members that have made all the difference in my journey
Sending hugs and prayers your way
Getting to the right doctors have been a blessing as well,
stay strong and persistent in your search for healing
Hi @Jules I’ll have to do an update post
Ok at the moment but what a rocky road lol
I just love all the support you contribute
I always learn so much from you and Wendy
Good to see you back, @mekanX! I’m glad you’re ok at the moment but that doesn’t sound super optimistic. I’m sorry your road to healing has been a bit winding & rough! I look forward to your update.
