Hi everyone. Just a bit of a quick run down of my situation. I started getting ear neck jaw and a constant foreign body feeling in my throat just after this past new years day. I immediately went and got checked out and walkin doctor said I had an ear infection in which he started me on a ZPACK antibiotic. That didn’t do too much except give me esophageal thrush.Ive been scoped a total of 6 times now by ER docs as well as an ENT and they said my thrush is gone but my ear throat and neck pain remains. ENT said no abnormalities found during the scope but that thyroid maybe a bit enlarged so I has that ultrasounded and biopsied and it came back benign.I went to my dentist who did a panoramic xray and he said I have ES based on having elongated styloids. He referred me to an oral surgeon who thought so too. He ordered a ct with contrast. That neck ct apparently showed no abnormalities. But from my understanding if the radiologist doesn’t know what to look for he might not see the elongated styloids. I don’t know where to go from here. My GP thinks it’s globus and the ent says GERD. I take meds for acid reflux because I also have Crohn’s disease. I know somethings not right. I feel helpless because most doctors ive talked to don’t have a clue what eagles is. So I sit in limbo reading over all of your individual stories to get some support and guidance. You all know what this process is like and have been in my shoes. You all are awesome!
Hi Colleen. When the oral surgeon ordered the CT scan, did he ask that it be evaluated for elongated styloids? You're right - that's something that radiologists don't normally look for - they have to be told to evaluate for it. Can you ask the oral surgeon to have it evaluated again?
Several people that I know of on the forum have been diagnosed with just the panoramic x-ray, so that may be all you need if you can take it to someone who knows about Eagles. Are you anywhere near a doctor on the doctors list in Canada? You could also have your scan sent to them to have them evaluate it for styloids. I would think your next step is to try to get to a doctor who knows about Eagles and have both your x-ray and ct scan to show them.
Hi Heidemt. Thank you for responding. I’m not sure if the radiologist knew to evaluate the styloids. I’m going to phone the oral surgeons office this week and see what he has to say. Out of all the doctors I’ve consulted he’s the only one that has mentioned treatment options if it turned out to definitely be eagles. I am a surgery risk as I also have a bleeding disorder and doctors discurage me from any type of surgery because of the added risks. He mentioned pain meds and injections but I’m worried that if the ct didn’t show anything that he might just day sorry I don’t know whats going on with you, dispite the panaramic xray. I’m willing to travel out east if there is a doctor in Ontario that can help me or even in the states if I have to. I don’t think there is really anyone in B.C. I could be wrong though. I would like to be able to try converting the scan to a 3d CT and see what that shows. I never knew how hard it would be to get a diagnosis of something like this. I feel for the many of you that have struggled for years and years.
Did you ever ask to see a copy of your ct scan and what the findings were. I not sure were you are but here where i am the ct machine is computerized and spits out what wrong the radolgizest just reviews it. It usely come up if your med chart is onlie, with your DR. I knew befor my Dr even called me. If denstist saw it i would seek another family doc and get another ct done or mayb have ent send you for one.
Hi God’s blessing. I’m in Canada and when you go for the scan here they don’t say anything to you at the time of the test or give you a copy of the scan they just tell you that your doctor will get a coy of the results in a couple of days and to get ahold of your doc to go over the results. In my case the docs receptionist called and said it was a normal ct with no abnormalities found. I am going to get ahold of my oral surgeon who ordered this test and ask to sit down with him and go over the scan and let him explain this to me. If I don’t get anywhere with him then I guess I will have to look at finding another doctor out of my city and possibly even in the states. I hope I can just get a copy of my scan to show another doctor. I don’t see why not, it’s my scan. I’ve just never done that before and I don’t know how it’s done here in Canada in regards to that kind of stuff.
Hi! Im in Canada, Saskatchewan. I was able to obtain my ct scan and I just emailed a radiologist here and thankfully he responded and he did a 3d reconstruction of my ct scan for me. I had surgery 4 weeks ago, still have pain but I believe my pain is not eagles related anymore. I needed a second opinion of my ct scan for them too measure the styloids as it wasn't even measured the first time they reviewed it, as it often goes missed.
Hi Kelx. That’s good to know that you were able to get a copy of your scan and get a radiologist to take another look at it. I will definitely try to do that this week as well. Do you think your pain dispite your surgery could be from the healing process or is it the same kind of pain you experienced before? I worry alot of this pain is nerve pain and I’m not sure what can be done about that. Boy is this a frustrating process. I find the lack of support and knowledge from the doctors just as painful as this condition.
Unfortunately my pain is the exact pain I have been experiencing before surgery. From the beginning it was always behind my thyroid cartilage so I figured it was related to Eagles. I do have long styloids so we figured it was worth a try to take one out. My other side hurts as well where the styloid is now. It’s all very confusing I think I may have multiple conditions riding each other, so it’s really hard to figure out which is causing which pain.
That is really discuraging to hear Kelx. It sounds like you’ve been dealing with this for a long time. Have you had all kinds of scans and scopes done? What does your doctor think of the pain not going away after your surgery? Did you initially get diagnosed from an ent or another kind of doctor? Sorry for all the questions. It just sounds like I have a lot of the same symptoms as you and I’m trying to figure out what else can be causing this pain if it’s not eagles. I hate playing doctor.
I had a ct scan, I was put under and had a scope down my throat and 2 different doctors used a long black scope down my nose too too look. Maybe an Mri is my next option. Doctors don’t think anything will show with an Mri as good as a ct scan would but you never know right. So I might end up having to fork that out of my own pocket if I can’t find a doctor who will believe me!!! Every doctor blames it on anxiety when they are at the end with me. Common now anxiety doesn’t cause severe ear pain, throat pain( left side), sharp object feeling in throat, pain in throat. Just stupid! They just want to blame it on something so they don’t look like stupid doctors not knowing what is wrong!!! Just about 2 years of this I hate it!
Doctor said too early too tell if it’s from the surgery healing that’s causing pain, but it’s not I know it!!! I’m all healed except for numbness under my chin and a crooked smile/laugh!!! Ugh! Ya I go thought major surgery and have a crooked face for life because I have anxiety! I had seen 3 ENT before this ENT who did surgery, BUT that’s only because I told him I have Eagles and to do surgery. He wasn’t even sure if my styloids were an issue because I don’t have pain when I turn my neck or swallow. I just got in contact with the head neurologist in Toronto and he said the same thing! He would have been very hard pressed to perform surgery on me cause he didn’t think it was the styloids! So hear I am again in pain and no where to turn! Maybe the MAYO clinic in the states? But I don’t have 10 grand floating around to pay for stuff in the states when it’s free for us here. I really don’t know what to do now as my family doctor is going to stop referring me to specialists I think, I hope not, but the pain is horrendous. Deep throbbing pain!!
I’m sorry that you had to go through the surgery only to still have so much pain,that’s awful! I can relate with the doctors wanting to blame it on anxiety. My GP told me after all these negative tests I had (endoscopy, black scope down nose and throat, ct of neck),that I really should probably see a phychiatrist or counselor for my anxiety. I told her of course I’m anxious! You would be too if you know something is wrong but nobody wants to get to the bottom of it and figure it out. Anxiety doesn’t cause terrible ear pain and jaw pain and sharp constant feeling of something in your throat. My panaramic xray clearly showed it.
Did you have your surgery done locally or did you travel out east? I’ve thought about consulting with Mayo too but like you I don’t have the funds for that. I told my husband that if I can’t get my doctor to order a MRI then I will pay for that to get done next. Just not sure like you said if it will be any more beneficial than the ct was. Gosh this is maddening.
If you're worried that it's nerve pain Colleen, have you tried the medications for that? Like Amitriptyline, Nortriptyline, Gabapentin, Lyrica, etc. Although that still doesn't help with whether it's ES related or not, as elongated styloids can cause pressure on nerves and cause nerve pain!
Colleen said:
Hi Kelx. That's good to know that you were able to get a copy of your scan and get a radiologist to take another look at it. I will definitely try to do that this week as well. Do you think your pain dispite your surgery could be from the healing process or is it the same kind of pain you experienced before? I worry alot of this pain is nerve pain and I'm not sure what can be done about that. Boy is this a frustrating process. I find the lack of support and knowledge from the doctors just as painful as this condition.
Actually was able to find a surgeon just an hour away from me which was very surprising. I was looking to fly away and find a surgeon but was lucky too find one so close. This whole this is very frustrating!
No Jules, I haven’t tried any of those nerve medications yet. I suppose I could bring that up with my doctor as well. I would imagine that they all work about the same for nerve pain?
That’s good that you found a surgeon so close to you Kelx. I was just looking up hyoid bone syndrome. I wonder if that could be diagnosed by the ct scan if a radiologist knows to look for that too? I’m grasping at anything at this point.
Sometimes it can take a few tries to find a medication which helps.
I was prescribed all those drugs and then did research on them and decided living in pain was better than taking dangerous medications lol I know I’m stubborn as hell!!! I want an answer not a bandade and they always seem to want to prescribe but not fix the problem. My hyoid bone doesn’t hurt so it can’t be that for me. I’m so scared I have cancer and it is small so it won’t show up yet lol. I’m not sure if it can be diagnosed in a ct scan. Maybe research it abit more on the Internet. I think pressing on the hyoid and university the thyroid cartilage confirms it if it causes a lot of pain. I tried that and it doesn’t hurt, my pain is much lower down lol
Kelx said:
I was prescribed all those drugs and then did research on them and decided living in pain was better than taking dangerous medications lol I know I'm stubborn as hell!!!!!!!!!! I want an answer not a bandade and they always seem to want to prescribe but not fix the problem. My hyoid bone doesn't hurt so it can't be that for me. I'm so scared I have cancer and it is small so it won't show up yet lol. I'm not sure if it can be diagnosed in a ct scan. Maybe research it abit more on the Internet. I think pressing on the hyoid and university the thyroid cartilage confirms it if it causes a lot of pain. I tried that and it doesn't hurt, my pain is much lower down lol
I’ll research those nerve medications and bring that up with my doctor. I just phoned her and I can’t get in to see her until next Monday. I also asked for a referral to a neurologist to cover maybe a neurological reason for this and was told the wait time is between 1 - 2 years to get in (I’m not concidered urgent!)ugh!
I’ve had the same worries Kelx. I think our mind goes there when we feel pain without having a clear explanation of the cause. I’m hoping these tests would have picked up anything like that.
When I push on the area of the hyoid bone it makes that prickly boney feeling in my throat even more uncomfortable. Don’t know. I’m tired of playing detective all the time.
Holy 1-2 years!!! You need to get an URGENT request and it will be much sooner than that. I actually seen a neurologist last year and have an MRI of brain in 2 weeks!! Took only 8 months to wait for that damn MRI on a semi-urgent. Called my doctor and asked her to put me on urgent request and they finally put me on the appointment list for MRI. Ya it’s a waiting game for sure and I’m always researching on the Internet for a solution or an ah-ha moment! My life is completely around this pain and the unknown! I’ll be dead before I know what’s wrong with me!! Do you have any humming in your ear? I just started a month ago it’s so damn annoying and loud!!!
Colleen, some medications work for some people and not others. And some medications may work for a certain kind of nerve pain that others don't help. Like Jules said, it can take a while to try out different medications to see what works for what pain. My doctor tried out the "standard" medications for me and I also ended up going to several neurologists and a number of pain doctors before I found the most effective medications for my situations.