Hi, I'm new here, from London in the UK and as yet undiagnosed but have spent the last 5 months pretty miserable and almost depressed with a host of symptoms that i didn't understand... I've pretty much had it in my head that i've got some kind of cancer which has had me frightened to death.... but i found this forum and some of my symptoms really started to make sense, I was hoping I could share my experience with you as talking about it seems to help and noone I speak to understands or thinks i'm mad.
Firstly i've been to 3 different doctors. I kept returning to my main doctor since February when i had dizzy spells for 5 weeks which was diagnosed as apparently ear infections, this improved but I was left still uncomfortable on the right side so returned again to doctors who said nothing wrong, asked for second opinion, he said eustachian tube disfunction... Since then my discomfort has been worse.
I've had a click when I dry swallow which is around my adams apple, doctor said its normal, ITS NOT NORMAL, Its annoying and wasnt there before! I also get burning pain on the right side at the back of my throat that seems to radiate into my ear and to the bottom of my ear, sometimes its more of an earache... this is made worse when I eat and specific foods really make it worse. Coffee is one thing that I know will set off the burn for the rest of the day. acid foods and cold stuff also seem to irritate it too. I get periods when my face feels full, like sinus pressure and pain going from my ear across below my eye to my nose like sinus issue. I get neck/muscle pain on that side more than the other when i turn my head to the right too. My swallowing is weird, its like I don't swallow properly on that side, i can feel my swallow properly on the left but the right feels almost like it doesn't do it properly or numb like. I also feel like sometimes my muscles ache down into my shoulder blade or chest.
A few months back I was fiddling at the back of my thoat where my tonsils are as thats where the burning seems to be in the region of and i found, behind the tonsil, a hard long structure, its poking behind the skin going downwards behind the tonsil... Obviously this was a shock as there wasn't anything on the other side. I went to 2 other docs who said "thats impossible, there are no bones there" one even felt with his finger and couldn't feel it...!! Both wrote it off as lymph tissue, must be infection. It can't be lymph, its long and thin but not sharp! When I press on this i feel pain in my ear, and it is REALLY sore for about 2 days after!
I just wondered if these symptoms sound familiar to people on here? I have an appointment with an ENT in October although it seems they don't do scans (my doctor referred me) so i'm now thinking i'm going to be waiting months more if they refer me again with this constant discomfort and worry, I just want to enjoy my life, i'm only 31!
Thanks in advance
Smithy, it sure sounds to me like you could have Eagles. Very much so. Maybe print out some articles or some threads from this forum and show the ENT. You usually need a 3D CT scan or a CT scan with contrast to diagnose Eagles and they have to know to look for the styloids.
There have been some other people on the forum from England. I'm not sure if any of them have had surgery yet though. Maybe you can try to email them.
I hope you can get some answers soon. We all know how awful this is and how much of a struggle it is to get doctors to listen. I personally went to 17 doctors before I was diagnosed. Don't give up. Keep pushing.
Thankyou heidemt! I was wondering if other people share the symptoms i have, especially how many people can actually feel what is like a bone in their throat? Can it vary where it comes through as i’ve read some people feel it in front of tonsil, or underneath, was wondering if people are like me and feel something in the depression behind the tonsil and if they press it, they feel like it puts pressure up around the ear and pain!? I’m also trying to understand why certain foodstuffs seem to upset me, as i said hot coffee burns a lot, I ended up taking PPI as thought I had reflux because of the burn but now i’m not sure… This is all so confusing!
If you want to speed up your process call around to oral surgeons (Dentist) and try to find one with experience with eagles it can easily be found on a panoramic xray by a qualified oral surgeon Good luck Sounds like eagles to me.
Yes, yes, it is Eagles. If you want pictures of my surgery, I can upload the pictures so they can see for themselves. I might even post a surgical report but I would block out my personal information
check out under discussion" Newest version of my spreadsheet" If you have excel on your computer, you can access the spreadsheet that I posted. There is a doctor on our list in UK. I don't know how close you are to him. If you can't access my spreadsheet, I can take the time to look him up for you.
Let me know if you need any of this from me. I will not be near my medical records for awhile after next week. I am traveling now before I have anymore health issues to put a damper on my life.
Just print out the Wikipedia page entitled Temporal Styloid Process. It explains what it is and give a paragraph about elongated calcified styloids. The one in my tonsil bed was only partially removed. My doctor removed about 2.8 cm, yes, there is a bone there doctors, if the styloid decided to grow. Look it up, doctors.
Oh a better way to explain the problem for doctors is "Elongated Calcified Temporal Styloid process and ossified stylohyoid as well" If they know anatomy, they know what the temporal styloid is, but rarely have they heard of Eagles Syndrome.
Hope this helps!
I forgot to say your symptoms are very much like mine. Almost exactly, including finding the hard thin bone, it felt like a popsicle stick. My doctor called it a pencil. The coffee burn could actually be acid reflux but if your problem is on the left side it could also be a combination of acid and the styloid pressing on the vagus nerve. Don't even try to tell that to a doctor.
I had to take PPI's and I also had to cut out all cofffee, caffeine, cheese, and onions, for a very long time. I still have the acid issues so it is probably just old fashioned GERD, but it is so much better without the bone there. The pain would go from my stomach to my ear. It still hurts my ear when I have acid in my throat so I stay away from the wrong foods and have the head of the bed lifted and take PPI as needed. I may have the external surgery one day if it gets bad again.
Sorry this was long, but hope it helps.
This is the weird thing, i have no ear pain on other side, its just on the right, so weird! I don’t ever feel like i have reflux/acid in my throat which is the other strange thing. I just get neuralgia moving around my face from ear to behind my nose or bottom of ear, into shoulder and sometimes i think i feel it in my arm too.
It is not weird. You can have pain on one side only. You may not have acid reflux. It may all be caused by the nerves that are near the styloid. Many people have your symptoms. I don't remember who or when, but someone on this forum posted a discussion asking about what symptoms we all had and then posted the results. I would say it was posted within the last 6 months for sure. You might want to scroll through the discussions. Perhaps the person who posted it will see this discussion and repost the information. All your symptoms are in line with Eagles. Most doctors will only acquiesce to ear pain and for sure they should not deny the bone in your throat. So just find an oral surgeon or ENT to do the CT Scan of your styloids.
I do not know how far he is from you, but we had one recommendation from your country. Rogan Corbridge, Reading, UK
Hope this helps you even a little.
I also feel a hard bone in my tonsil area, my right styloid is only covered with some tissue and it feels like it is growing into my thoat any moment . It's a big bone, like my little finger and it has a sharp edge pointing inside my tonsil. My left styloid is 5 mm inside the "pharyngeal wall" of my throat so I cannot feel it with my fingers.
I have a long history of dysphagia (more than 7 years by now) and dicovered the bone "accidently" ;) because I had this horrible feeling in my tonsil area..
I had a CT-scan with contrast and it says that my styloids are "only" 3 cm on each side but because of my tooth fillings they could not see the hole area properly on the CT scans. I also have problems with my internal jugular veins, the left one is enlarged while the right one could not be seen so ..propobly my tight styloid is compressing it.
I live in Sweden and it is very hard to get help. The ENT don't want to handle my case, not even the major hospital in this country seems to have any specialists for Eagles syndrom. Next week I will have a swollowing test and in two weelks I will see another ENT who has worked with head- and neck surgery in his past.
I think you should have Ct-scans and even a swollowing test if you have difficulities swollowing on one side.
Don't give upp!
Everyone already gave you great advice, but I just wanted to wish you a speedy diagnosis and quick recovery. It definitely sounds like eagle syndrome to me.
Just wanted to say thanks to everyone for the welcome and support! Got about a month until my first ENT appt although i'm thinking i'll get referred as they dont do scans! I seem to have good and bad days with this, sometimes i'll get the full face swollen feeling all day with burning feeling in neck/ear... then otehr days its not so bad... also get brain fog and kind of dizzyness too.
Same to all of you n terms of speedy recovery!!!
Don't you hate waiting? I remember before my surgery thinking that schedules would quickly open up if my pain and discomfort were felt by the doctors, too.
Hello, I got my diagnosis from my dentist, I went in for a regular check up and told her I was having constant headaches, eye pain and jaw pain. She did a simple panoramic X-ray of my face, jaw and neck and that’s when she found it. I had a tonsillectomy when I was 20 and have had weird symptoms from that day forth. I’ve experienced syncope (fainting), severe chronic headaches that basically keep me debilitated. I have jaw, face and eye socket pain, along with clearing my throat, feeling of tightness around my throat area, and I can’t turn my neck too far without a stabbing feeling in my neck. I always thought I was going crazy and becoming a hypochondriac. I have worked for doctors for the past 18 years and they could never find anything… So they said. Then I see my dentist and complain of jaw pain and she finds it? So I am going to pursue this diagnosis and find a treatment. I’m going to keep you all posted. Let you know the progress. We are a rarity and this needs to be known. Thanks guys
Just wanted to say welcome and that I got my diagnosis the same way…by accident when I went to a TMJ specialist. I don’t have terrible symptoms other than swallowing problems, but apparently have a 65 mm styloid. I hope you are able to get some relief!
Thank you! I am hoping to get answers and relief.
I’m still waiting to be diagnosed having a full paranormic xray with dentist tomorrow this has been going for years and got worse when I had my tonsils out I’m miserable with this
wow! I just found my old post! Its amazing to read back and remind myself of my old symptoms and make myself feel better than i’m not going mad and reassure me I dont have some kind of throat cancer.
Kind of an update (ages later) I went for my ENT appt and also had a CT scan with contrast back in 2014… The consultant said he couldn’t see anything… He said my styloid was slightly longer but nothing major, he was quite dismissive of offering anything else and i was sent on my way. I took some amytriptiline and that may have helped, i’m not sure… but the symptoms improved a little and i guess i just got on with things. Unfortunately over the last 3 months i’ve had horrid symptoms again… pretty much the same as those I mentioned in my original post… my main problem has been a sore throat on that side and it also feels like my eustachian tube is playing up on that side as well. I had a feel with the finger and the bony protrusion is very much there, curving in towards my tonsils and is pointy on the end and literally poking through the throat skin as though it might actually burst into my throat sometimes It is so confusing that the original consultant commented that the styloid isnt that long then yet how is it poking into the back of my throat?!. I really feel at a loss of what to do, it is making me depressed as the symptoms are not nice and as a bit of a health anxiety sufferer i constantly worry what if this is something else?! I had an ENT do scope in January as i was complaining of the sore throat and he said he couldnt see anything, i wish i’d mentioned the Eagles but it didnt cross my mind at the time. I feel quite miserable.
Smithy, If you are still out there. My symptoms are very very similar to yours. Just seeing how things have progressed with you…if you are still out there and willing to respond.
@Smithy, I want to apologize that no one responded to your post until Taylor. It’s been 3 years.
I, too, would like to know if you were able to find someone to remove your styloid. I hope you have had surgery & are doing much better!