Let me introduce myself. My name is Nikki and I’m 41 years old. I’m glad to be on this forum and desperately looking for help.
My history: Six months ago I had a terrible sinus infections with a horrible sore throat and severe dry mouth. The sinus infection cleared up with antibiotics, medrol dose pack, and a steroid shot. However, the sore throat did not leave or dry mouth. Over the next month my tongue became very sensitive and started to burn all over and was very sore. Over the next few months the pain progressed into excruciating earache, tonsil pain, jaw pain, and slight back molar pain along with burning tongue all over.
I’m scared to death I have tongue cancer. I had my tonsil taken out a month ago in hopes of some relief. It didnt help and the pain is still here. Stabbing tonsil pain, a earache that never leaves, and all the other areas. Does this sound like ES or GN? I get minor relief from neurotin, but the pain has been constant for months. My pain is not intermittent and it’s not electrical pains which i have read about.
Anyone else have constant pain? Constant tongue pain? Sore tongue? Stabbing tonsil pain? Constant Severe Earache?
I have read all of these symptoms here on this forum, and they come up a lot. That ear pain, tongue pain, tonsil pain and earache are very typical of ES. I have read over and over that ES symptoms come on after an infection or some kind of trauma, so that matches up. I have a different variation of ES and can't relate to your symptoms, but honestly, I think you'll find that most people here can relate to them.
I think it's common to get something weird going on with your body and think 'cancer'. That makes for a lot of anxiety (I think most of us have been there). I would hate for you to have that anxiety for very long, so I think you are smart to come here and look for similar symptoms. While you search, you will find that a lot of things can cause your symptoms, and hopefully that will help with any worry :)
I have had ES symptoms for many years but they became unbearable after an abscess tooth in October 2011. I got the worse ear pain, sinus pain, dry mouth, every tooth in my mouth hurt & super sore throat with a super sized massive headache. I have many more symptoms now but that is when I started my search to figure out what was going on with my body. I was diagnosed with bilateral Eagles Syndrome 12/2012. I finally found my surgeon and had my right styloid removed 7/17/13. I would say your symptoms are related to Eagles syndrome.
Does anyone have a sore tongue and lots of pain in the tongue?
Hi again...this might help you to figure out the tongue thing. I hope it's clear enough....you probably have exact areas that you can pinpoint on your tongue that are hurting. See if this diagram helps? Credit goes to Netter's
did you see an ENT? You should see a specialist on Eagles syndrom. There is a doctors spreadsheet in the discussion forum.
I don't know where you live, but most Eagle docs seemes to live in the U.S.
I have tongue pain inside the left side of my tongue and a burning sensation on the right side where the tongue touches my wisedomestooth. Constant earpain, jaw pain that feels like something is stuck underneath the right jaw bone, a sore spot outside my throat hurts beneath the adams apple. My neck hurts a lot in one area on the back side near the skull base. I also have pain where I can palpate the styloideus in my right tonsillar fossa. For the last month I got several mucous retencion cysts on my hard palate. I don't know if they are related to Eagles syndrome as well. I have dysphagia since 2006 but can eat more foods now when I am lying on the side. It is hard to eat sitting on a chair - when I do this i get cramps in my mouth/tongue/troat and cannot swollow the food. Sometimes it is hard to speak because my tongue and muscles cramp. Other symptoms are fatigue, dizziness, tooth pain, I can not hear properly (nearly death from time to time and blurry eyesight.
I am also scared I habe cancer in my tongue or somewhere else in my mouth/neck. The doctors I have seen deny it and don't know why I have all this pain.. but on CT scans they could see the "Eagle bones" so I get diagnosed after 7 years. The last months I got more and more symptoms from the left side. Before my "problems" where referred to the right side. I think the styloids are still growing and that is why the symptoms vary over time.
Thank you both for the help. My pain is constant but I don’t feel like I have anything stuck anywhere. I have no problem swallowing just a sore throat/tonsil, base of tongue, earache, and jaw pain kinda similar to where tmj pain would be. However, my tongue burns all over and has weird sensations and burns to eat citric food or spicy. Does ES cause this? How would I palate my styloid?
I have seen 4 ENT’s and finally got to a specialist. He didn’t see that my styloid was elongated on the CT. I have have had 2 CT’s and tonsillectomy and tongue biopsy which were inconclusive. I will now be seeing a neurologist. Is there a certain imaging that is better than the other for detecting ES?
I don’t know if my symptoms are ES. They don’t seem as severe and mine aren’t episodes but constant. The earache hasn’t left in months, not even for a second. I do have a throbbing in the Tonsil area.
BigBugs, was your initial symptoms constant? Was the earache relentless?
At first, no it did not. I had pressure, itchy ears and some pain. Now it is constant in my right ear. The only thing that takes the pain away is oxycodone. I am wondering if the so called TMJ/TMD specialist did damage to my GN nerve when he did an ultra sound guided steroid injection into my TM joint to fix my so called TMD. My jaw joint never hurt until I allowed him to treat me. Lesson learned, the hard way. So be very careful about what treatments or surgeries you choose.
My tongue always has tingling, burning and dry. It also use to hurt to stick out like to lick an ice cream cone. I am able to lick ice cream for the most part with very little pain. It had also twitched a few times prior to my right styloid being removed. Have you had that happen?