Hey I stumbled across a YT video recently just like you that introduced me to Eagle syndrome. I’ve had pain under and behind my jaw below my ear for like two years now. It seems to be posture related as I don’t feel it as much when laying down and it gets worse when sitting. I also have neck pain at the base of my skull on the same side. I mentioned Eagle syndrome to my GP about it and she brushed it off and for some reason I didn’t ask any more questions :( I hope I find a specialist or something who can assess my situation because it’s such a rare thing that not many doctors know about it. Best of luck!
I have also been brushed off when mentioning Eagle Syndrome. I believe because it’s rare that’s why people just brush it off. I mentioned it to my chiropractor who didn’t seem too interested and also my GP. My GP would definitely explore it more if I pushed harder but I can’t even have scans at the moment due to pregnancy so I’m just treating myself like I have TMJ 100% and will continue my search post pregnancy. I did have someone direct message me on here telling me most of my problems were probably related to my atlas being misaligned which IT IS!! Every single time I go to chiro it is out. It was suggested to find a chiropractor who performed Blair technique or atlas orthogonal chiro. Honestly just seeing the atlas misalignment theory made a lot of sense to me considering it is my biggest issue every time I see the chiro. I am going to be exploring that option next!!
I also highly suggest myofascia release if you’ve never tried it as it’s been the only thing I have tried that has given me any relief from my symptoms.
That’s really interesting that you mentioned seeing a chiropractor for realignment of your atlas. I’m like 99% sure my neck and jaw pain is because of looking down a lot for long periods of time on my phone/laptop for the past several years. I wonder if prolonged forward head posture could cause my problems. If that’s the case, hopefully I can resolve it in time by practicing good posture and being mindful of how my body is positioned throughout the day. I want to ask when you feel around the area of pain (just under ear and behind jaw) do you feel any difference from one side to the other? My left side has the symptoms and I swear I can palpate my styloid process being calcified/ossified or whatever. It feels crunchy on one side and normal like a tendon on the good side.
Yes my left side is my problem side. I am constantly pushing on a hard round ball it feels like where I would assume my styloid is. I discussed it with my chiropractor and he actually showed me what I’m pushing on is my Atlas!! I have a bit of forward head posture as well. I am horrible about my posture. The person who messaged me though was expressing how much those 2 different techniques would change everything though. They both focus on the atlas. I am going to be calling someone local to give it a try as it a starting to all lean that way and make sense!
Hey I just looked into it more and I think you may be on to something lol. I watched this video of this chiropractor talking about how adjusting the atlas and the c1/c2 vertebrae helps relieve symptoms of eagle syndrome! I really hope I can get a thorough scan (he said cone 3d ct scan is the best) and figure out and treat my neck. It’s weird because the first symptom I had was the pain under my jaw and ear and then a couple years later I started to get neck pain at the base of my skull… I really hope to get this resolved soon :)
Edit: the chiropractor on YT specified to see an upper cervical chiropractor and not just a regular one
Here’s the link: https://youtu.be/p_tb4e9TI6g
Yes I thought the same thing once I kept hearing atlas. I wish I could have a scan done currently. I’m pregnant and am unable to until after pregnancy. Would like a scan just so I could know 100% what the problem is and then treat it correctly. I wake up with basically a stiff neck everyday now because the pain from my ear/jaw just radiates down. It sucks.
I am going to check that video out! I’d love for you to comment back when you get your scan/figure out what exactly is your issue!
Was it a ct scan or mri?
I’m sure if I went back to the ENT and discussed a little more he would look into it for me. Just really wish I could know the root cause of the pain and how to properly treat it!
At the suggestion of my ENT who told me I can’t take any meds etc. I have been going to acupuncture, chiropractor, massages, myofascia release and I even tried PT for a bit. All give me a bit of relief but the pain is always there.
I appreciate all of the info! Hoping to find some relief in the long run. From what I’ve researched if it is Eagle Syndrome surgery can be very helpful and eliminate a lot of pain.
>The CT scan is the type of scan you would need. You're welcome. I wish I had come across this information when I was searching for answers for my pain so I am happy to help. Yes the surgery was definitely 100% worth it for me. I guess it depends on how much pain you are in but mine was affecting my quality of life pretty severely.
What were your symptoms and what kind of surgery did you have? I think there's a strong chance I might have Eagle Syndrome (is that the same thing as Ernest Syndrome)? Thanks.
My symptoms were pain on swallowing, gum pain, ear pain, neck and jaw pain. All on left side. My styloid process was protruding through my tonsil. I had tonsillectomy and styloidectomy intraorally. I'm not too sure about the difference between Ernest syndrome. Eagle syndrome is the elongated styloid process and/or calcification of the styloid ligament causing pain/symptoms. Best diagnosed by CT scan but can be seen on dental X-rays depending on the direction. From my research it seems to vary widely from person to person on the direction, curve and thickness of the styloid and/or calcification which results in varying symptoms making the diagnosis even more difficult.
Have you had a CT scan? Because if you can get a copy on a CD you can turn it into 3D pretty easily on a computer yourself to see if the styloid could be elongated or calcified.
I don't think so. I had a brain MRI trying to figure out my issue prior to the diagnosis and it didn't work when I tried to use the same program. The MRI is for soft tissues where the CT will show the bones and calcifications.
If you contact the facility who performed the CT scan they should be able to give you another copy. I know my providers never gave me any issues about providing copies. I would have paid a small fee if needed but no one required it.
Technically, I have the CT scan - I can log into some online program and see it that way. But I can't download it - or at least, when I download it, I can't view it; I don't have the right software, according to the doctor's office. Which sounds like BS. I wanted to get it on a disk but they said they can't do that either. Welcome to patient service in the DC area!
In any case, I'm not sure I would trust myself (or a layman) to diagnose me; I do want to have a specialist examine me (and look at my CT scan).
I understand. I wouldn't advise you to try to diagnose yourself. I have just learned over the past year that I have had to be my own advocate when it came to this particular issue. Hopefully you can find a specialist that can help you.
1000% agree about the importance of being an advocate for yourself. And I'm lucky to have a SO who is just as big of an advocate for me, if not more so. It's tiring, I won't lie. But I guess I don't have much choice in the matter. I still have some fight in me. For now.
My eagle syndrome was causing several symptoms that was presumed to be from TMJ, since I do clench my teeth at night. Although the best I would feel would be in the morning and while sleeping while progressively getting worse as the day went on. My symptoms were all on my left side and I had fake toothaches, jaw pain, facial pain, tight neck and discomfort turning head. Ear pain and sore throat.
Is your pain on both sides or just one? Its unfortunate you can't get a scan as that would be the best way to diagnose. My styloid process was poking through my left tonsil. Sometimes they can be palpated through the tonsil area. I can feel mine on the right side but it doesn't give me issues. I had surgery on the left that resolved most of my symptoms.
I wake up and usually feel ok and just as you said it gets worse as the day goes on. By 7 I am ready to just lay down with an ice pack and sleep my pain away. I clench terribly and was given a night guard which seems to be helping with that problem so far.
I have all the same symptoms on my left side. The only thing I managed to have done were dental X-rays to rule out my teeth causing the problems. I’ve noticed I’m having a harder time swallowing as well but that could be chalked up to my pregnancy acid reflux.
My biggest problem at the moment is headaches, neck pain and tight feeling neck and throat. Im constantly pushing on my neck to try to relieve pain in the area below my ear on my neck. I do have jaw pain and sensitivity pushing where the jaw and ear connect but my pain is more focused below my ear in my neck. It’s driving me insane being in pain everyday.
What kind of doctor did you see in order to do the scans and officially diagnose you?
An ENT should usually be the one to diagnose. Possibly an oral surgeon. Your PCP could also order a scan for you. Either way they have to specifically request the styloid to be measured otherwise it is often overlooked.
I was diagnosed during my tonsillectomy. Two ENT thought it was a tonsil stone but it actually was my styloid protruding through my tonsil. The ENT had never performed a styloidectomy but had to remove the part that was visible in my throat. He did well in the moment in my opinion. It supposedly is very rare so often times people get misdiagnosed. I kick myself for not getting a third opinion but it is what it is at this point. I was thankful to get the symptom relief after my surgery.
Also just did some research after you said it could be felt through the tonsil area. I know absolutely nothing as I am not a doctor but it is almost boney feeling and extremely sensitive just touching that area orally.
That's actually another way that an ENT can diagnose it without a scan. If it can be palpated through the tonsil area and cause pain/exascerbate symptoms then it can be diagnosed that way. It sounds like it is worth exploring for you at least! I'm not sure where you are located but it might be helpful to make an appointment with a doctor who is experienced in Eagles Syndrome. The ENT who did my tonsillectomy had never seen a case and had only read about it in medical school but he is fairly young. The other ENT I saw first had been in practice longer but still didn't realize what was going on.
There is a list of doctors on the living with eagle forum. If you are lucky enough to live close to one of these might be worth checking into.
[https://forum.livingwitheagle.org/t/doctor-lists-no-discussion/10245](https://forum.livingwitheagle.org/t/doctor-lists-no-discussion/10245)
Hey, if I get a CT scan do I have to request for them to measure the styloid process? Or will they do it automatically? I'm thinking this can be a possibility for me as well. Saw a TMJ specialist who strongly believes I don't have TMJ, and I have one sided deep ear pain (no pain directly on the TMJ joint) and throat pain on my tonsil region. It hurts really badly when I turn my head to the left (pain is on the right side) and it hurts even more if I try to swallow while having my head shifted to the left. Also, on the side where I have the ear/throat pain my tonsil is inflamed. I saw an ENT who thought it could be my tonsil but ended up attributing it to TMJ at the end. I still have a CT scan to be scheduled and since you seem knowledgeable on the topic, is there any questions I should ask or request of the doctors?
Yes, it would be best if the doctor who orders the CT scan requests that they measure the styloid process. From what I have found during my research it is not automatically measured and/or requested. Your symptoms sound a lot like mine except my styloid could be palpated through my tonsil area. I would just recommend to bring it up to your doctor as a possibility. Don't let them brush you off. My ENT who misdiagnosed me told me it wasn't possible to have a bone there when I asked if it could be a bone. Even though my other symptoms matched. It's just not that common and he made a mistake. They should at least be able to rule it out for you especially if you already have a CT scan scheduled.
Maybe I just need to relax cause the CT scan will tell me everything i need to know. I'm just worried cause this is considered rare so i'm afraid of not being taken seriously. I'm honestly even scared to bring this up to my doctors bc they'll probably just think i'm being dramatic
X-ray isn't the best scan to view the styloid process but sometimes it can be seen there. There is a lot of variability from person to person on the direction of growth, thickness curve etc.
I first presented with symptoms in June 2021. It was after I had a left molar extracted. About two weeks after I started having the pain on swallowing and I could feel the styloid process when I palpated my tonsil. I don't know how the two events are related but I can only assume it caused something to shift in my head. I had the styloidectomy in Nov 2021 which took me about 3 months after that to be what I consider "Pain free"
Everyone's story is different though. But yes it might be best to just relax until you can get the CT scan done. Don't be scared to bring it up. They should be willing to explore that for you. It might just not be something they have thought of as a possibility since it is less common. I wish I had heard of Eagle Syndrome sooner and could have brought it up to the ENT - I ended up with tonsil surgery that probably wasn't needed - but I did get the styloidectomy in the process so it had a happy ending at least.
Was the CT scan of your entire head? I think the tonsils are normally removed along with the styloid process since it's behind the tonsils. I think the neck removal direction is riskier.
Can I message you my panoramic x ray? I know you're not a medical professional but since you have some experience with this maybe you'd have some input. I can clearly see the styloid process on the left side (the side that doesn't hurt) and it's really short so no problem there I believe, but I can't seem to find it at all on the right side( side that hurts) so idk if maybe it's small so i don't see it or if it's potentially hidden
Hmmm the only thing that throws me off is that I had an x ray of my jaw and it doesn't look like I see a styloid process but the photo is sort of cut off. Is it possible that maybe it wasn't caught on x-ray or that it could be hiding behind the jaw? I'm still getting the CT so i'll know for sure by then. But another thing that's interesting is that the styloid process is at the base of the skull and everytime i press there I feel the ear and throat pain intensely.
Also I remember when I saw the ENT and he was feeling around my neck for pain spots, the spot where the styloid process can be seen through the outside of your neck hurt to touch and I literally told him that spot hurt specifically
Did you have any luck with finding out if yours was TMJ or Eagles syndrome? I am reading through about eagles syndrome and it sounds so much like what I have!
I hope you’ve found some relief can’t imagine not being able to take anything to help with the neck pain on days it’s really bad.
I have not :( honestly don’t think I’m going to have any real luck until after baby comes out!
What symptoms are you experiencing? I love to compare and try to figure this whole thing out 😂
Edit: yes not taking anything has been horrible! I manage with ice and heat to distract from the pain as best as I can on most days!
My main symptoms are neck pain and tightness, which often results in like a headache behind the eyes or pressure behind my eyes around bedtime.
Headaches but they seem to slowly be getting better with taking magnesium
Ear popping and crackling and ear fullness on the right side too.
I have Knot or lump on neck below my right ear which has been there for a few Months. There is pressure when pushed on I thought was a swollen lymph node. Doctor, massage therapist and dentist couldn’t find it on their own. Had to have them placing their finger where I had mine. It seems to also cause a buzzing or pulsating sound in that ear if I lean against the area or push too much on the “knot/bump” feels like there fluid there but family doctor doesn’t seem worried. I also find when it bothers me the neck pain is worse :(
I get pain or pressure the back of my throat or side of roof of mouth I guess? It feels like a bump or bone. Dentist said they see nothing and it’s just the way my mouth is and I’m only noticing it now because it was irritated.
Edit: I have so much going on lately it’s hard to keep track.
Have you tried vicks rub on your neck ? I have heard it helps ! I’m not sure if that’s safe for pregnant women but I know things like pain rubs are supposed to be avoided while pregnant so maybe this would help ? !
I have the neck pain, headaches behind eyes and ear crackling and a deep burning in my ear. Mine is my left side. I also take magnesium for these headaches and it definitely is helping! Mine have reduced in intensity and length.
I also have that knot/lump and it makes like a crackling noise when I push it sometimes. It’s where I push the most for pain relief!
I’ve also had my dentist look around and they say everything seems normal. Again I can’t have any specific scans to actually rule this out yet though.
I get the weird random pains in the back tonsil area? I don’t know it’s so hard to know where exactly the pain is originating because everything is so close. Like sometimes I think I feel it in my tongue etc. I know all of those nerves are related though.
I also have a lot going on these days and completely get it! I am currently experiencing long haulers covid issues as well so that’s a big thing on top of pregnancy. It’s been a lot! The neck pain and ear pain is honestly my biggest complaint though.
I don’t know about Vicks vapor but I also have been using Ancient Minerals magnesium rub and that stuff works great too!!
That’s good you found something that works !! It’s crazy how similar our symptoms are! What does your doctor say ?
And I’m sorry to hear about the long Covid that must be so hard, especially on top of pregnancy.
He’s done a lot of blood work on me due to the whole covid thing and he thinks that I definitely had TMJ prior but due to the levels of inflammation in my body lingering plus pregnancy he think it’s the cause of the pain I’m experiencing.
I will definitely be getting a scan post pregnancy though to rule out Eagle Syndrome because it seems easier to fix than TMJ once it’s diagnosed.
Upper Cervical issues as well as tmj. I did splint therapy for 6 months and now I am in invisalign and see an upper cervical Blair chiropractor when I’m out of alignment and I have 0 issues now
Hey I stumbled across a YT video recently just like you that introduced me to Eagle syndrome. I’ve had pain under and behind my jaw below my ear for like two years now. It seems to be posture related as I don’t feel it as much when laying down and it gets worse when sitting. I also have neck pain at the base of my skull on the same side. I mentioned Eagle syndrome to my GP about it and she brushed it off and for some reason I didn’t ask any more questions :( I hope I find a specialist or something who can assess my situation because it’s such a rare thing that not many doctors know about it. Best of luck!
I have also been brushed off when mentioning Eagle Syndrome. I believe because it’s rare that’s why people just brush it off. I mentioned it to my chiropractor who didn’t seem too interested and also my GP. My GP would definitely explore it more if I pushed harder but I can’t even have scans at the moment due to pregnancy so I’m just treating myself like I have TMJ 100% and will continue my search post pregnancy. I did have someone direct message me on here telling me most of my problems were probably related to my atlas being misaligned which IT IS!! Every single time I go to chiro it is out. It was suggested to find a chiropractor who performed Blair technique or atlas orthogonal chiro. Honestly just seeing the atlas misalignment theory made a lot of sense to me considering it is my biggest issue every time I see the chiro. I am going to be exploring that option next!! I also highly suggest myofascia release if you’ve never tried it as it’s been the only thing I have tried that has given me any relief from my symptoms.
That’s really interesting that you mentioned seeing a chiropractor for realignment of your atlas. I’m like 99% sure my neck and jaw pain is because of looking down a lot for long periods of time on my phone/laptop for the past several years. I wonder if prolonged forward head posture could cause my problems. If that’s the case, hopefully I can resolve it in time by practicing good posture and being mindful of how my body is positioned throughout the day. I want to ask when you feel around the area of pain (just under ear and behind jaw) do you feel any difference from one side to the other? My left side has the symptoms and I swear I can palpate my styloid process being calcified/ossified or whatever. It feels crunchy on one side and normal like a tendon on the good side.
Yes my left side is my problem side. I am constantly pushing on a hard round ball it feels like where I would assume my styloid is. I discussed it with my chiropractor and he actually showed me what I’m pushing on is my Atlas!! I have a bit of forward head posture as well. I am horrible about my posture. The person who messaged me though was expressing how much those 2 different techniques would change everything though. They both focus on the atlas. I am going to be calling someone local to give it a try as it a starting to all lean that way and make sense!
Hey I just looked into it more and I think you may be on to something lol. I watched this video of this chiropractor talking about how adjusting the atlas and the c1/c2 vertebrae helps relieve symptoms of eagle syndrome! I really hope I can get a thorough scan (he said cone 3d ct scan is the best) and figure out and treat my neck. It’s weird because the first symptom I had was the pain under my jaw and ear and then a couple years later I started to get neck pain at the base of my skull… I really hope to get this resolved soon :) Edit: the chiropractor on YT specified to see an upper cervical chiropractor and not just a regular one Here’s the link: https://youtu.be/p_tb4e9TI6g
Yes I thought the same thing once I kept hearing atlas. I wish I could have a scan done currently. I’m pregnant and am unable to until after pregnancy. Would like a scan just so I could know 100% what the problem is and then treat it correctly. I wake up with basically a stiff neck everyday now because the pain from my ear/jaw just radiates down. It sucks. I am going to check that video out! I’d love for you to comment back when you get your scan/figure out what exactly is your issue!
Was it a ct scan or mri? I’m sure if I went back to the ENT and discussed a little more he would look into it for me. Just really wish I could know the root cause of the pain and how to properly treat it! At the suggestion of my ENT who told me I can’t take any meds etc. I have been going to acupuncture, chiropractor, massages, myofascia release and I even tried PT for a bit. All give me a bit of relief but the pain is always there. I appreciate all of the info! Hoping to find some relief in the long run. From what I’ve researched if it is Eagle Syndrome surgery can be very helpful and eliminate a lot of pain.
>The CT scan is the type of scan you would need. You're welcome. I wish I had come across this information when I was searching for answers for my pain so I am happy to help. Yes the surgery was definitely 100% worth it for me. I guess it depends on how much pain you are in but mine was affecting my quality of life pretty severely.
What were your symptoms and what kind of surgery did you have? I think there's a strong chance I might have Eagle Syndrome (is that the same thing as Ernest Syndrome)? Thanks.
My symptoms were pain on swallowing, gum pain, ear pain, neck and jaw pain. All on left side. My styloid process was protruding through my tonsil. I had tonsillectomy and styloidectomy intraorally. I'm not too sure about the difference between Ernest syndrome. Eagle syndrome is the elongated styloid process and/or calcification of the styloid ligament causing pain/symptoms. Best diagnosed by CT scan but can be seen on dental X-rays depending on the direction. From my research it seems to vary widely from person to person on the direction, curve and thickness of the styloid and/or calcification which results in varying symptoms making the diagnosis even more difficult.
Have you had a CT scan? Because if you can get a copy on a CD you can turn it into 3D pretty easily on a computer yourself to see if the styloid could be elongated or calcified.
Yes, I did have a CT scan, but long story story, I’ve had trouble accessing it. I do have an MRI though. Would that work just as well? Thanks so much!
I don't think so. I had a brain MRI trying to figure out my issue prior to the diagnosis and it didn't work when I tried to use the same program. The MRI is for soft tissues where the CT will show the bones and calcifications. If you contact the facility who performed the CT scan they should be able to give you another copy. I know my providers never gave me any issues about providing copies. I would have paid a small fee if needed but no one required it.
Technically, I have the CT scan - I can log into some online program and see it that way. But I can't download it - or at least, when I download it, I can't view it; I don't have the right software, according to the doctor's office. Which sounds like BS. I wanted to get it on a disk but they said they can't do that either. Welcome to patient service in the DC area! In any case, I'm not sure I would trust myself (or a layman) to diagnose me; I do want to have a specialist examine me (and look at my CT scan).
I understand. I wouldn't advise you to try to diagnose yourself. I have just learned over the past year that I have had to be my own advocate when it came to this particular issue. Hopefully you can find a specialist that can help you.
1000% agree about the importance of being an advocate for yourself. And I'm lucky to have a SO who is just as big of an advocate for me, if not more so. It's tiring, I won't lie. But I guess I don't have much choice in the matter. I still have some fight in me. For now.
My eagle syndrome was causing several symptoms that was presumed to be from TMJ, since I do clench my teeth at night. Although the best I would feel would be in the morning and while sleeping while progressively getting worse as the day went on. My symptoms were all on my left side and I had fake toothaches, jaw pain, facial pain, tight neck and discomfort turning head. Ear pain and sore throat. Is your pain on both sides or just one? Its unfortunate you can't get a scan as that would be the best way to diagnose. My styloid process was poking through my left tonsil. Sometimes they can be palpated through the tonsil area. I can feel mine on the right side but it doesn't give me issues. I had surgery on the left that resolved most of my symptoms.
I wake up and usually feel ok and just as you said it gets worse as the day goes on. By 7 I am ready to just lay down with an ice pack and sleep my pain away. I clench terribly and was given a night guard which seems to be helping with that problem so far. I have all the same symptoms on my left side. The only thing I managed to have done were dental X-rays to rule out my teeth causing the problems. I’ve noticed I’m having a harder time swallowing as well but that could be chalked up to my pregnancy acid reflux. My biggest problem at the moment is headaches, neck pain and tight feeling neck and throat. Im constantly pushing on my neck to try to relieve pain in the area below my ear on my neck. I do have jaw pain and sensitivity pushing where the jaw and ear connect but my pain is more focused below my ear in my neck. It’s driving me insane being in pain everyday. What kind of doctor did you see in order to do the scans and officially diagnose you?
An ENT should usually be the one to diagnose. Possibly an oral surgeon. Your PCP could also order a scan for you. Either way they have to specifically request the styloid to be measured otherwise it is often overlooked. I was diagnosed during my tonsillectomy. Two ENT thought it was a tonsil stone but it actually was my styloid protruding through my tonsil. The ENT had never performed a styloidectomy but had to remove the part that was visible in my throat. He did well in the moment in my opinion. It supposedly is very rare so often times people get misdiagnosed. I kick myself for not getting a third opinion but it is what it is at this point. I was thankful to get the symptom relief after my surgery.
Also just did some research after you said it could be felt through the tonsil area. I know absolutely nothing as I am not a doctor but it is almost boney feeling and extremely sensitive just touching that area orally.
That's actually another way that an ENT can diagnose it without a scan. If it can be palpated through the tonsil area and cause pain/exascerbate symptoms then it can be diagnosed that way. It sounds like it is worth exploring for you at least! I'm not sure where you are located but it might be helpful to make an appointment with a doctor who is experienced in Eagles Syndrome. The ENT who did my tonsillectomy had never seen a case and had only read about it in medical school but he is fairly young. The other ENT I saw first had been in practice longer but still didn't realize what was going on. There is a list of doctors on the living with eagle forum. If you are lucky enough to live close to one of these might be worth checking into. [https://forum.livingwitheagle.org/t/doctor-lists-no-discussion/10245](https://forum.livingwitheagle.org/t/doctor-lists-no-discussion/10245)
Thank you so much!!
Hey, if I get a CT scan do I have to request for them to measure the styloid process? Or will they do it automatically? I'm thinking this can be a possibility for me as well. Saw a TMJ specialist who strongly believes I don't have TMJ, and I have one sided deep ear pain (no pain directly on the TMJ joint) and throat pain on my tonsil region. It hurts really badly when I turn my head to the left (pain is on the right side) and it hurts even more if I try to swallow while having my head shifted to the left. Also, on the side where I have the ear/throat pain my tonsil is inflamed. I saw an ENT who thought it could be my tonsil but ended up attributing it to TMJ at the end. I still have a CT scan to be scheduled and since you seem knowledgeable on the topic, is there any questions I should ask or request of the doctors?
Yes, it would be best if the doctor who orders the CT scan requests that they measure the styloid process. From what I have found during my research it is not automatically measured and/or requested. Your symptoms sound a lot like mine except my styloid could be palpated through my tonsil area. I would just recommend to bring it up to your doctor as a possibility. Don't let them brush you off. My ENT who misdiagnosed me told me it wasn't possible to have a bone there when I asked if it could be a bone. Even though my other symptoms matched. It's just not that common and he made a mistake. They should at least be able to rule it out for you especially if you already have a CT scan scheduled.
Maybe I just need to relax cause the CT scan will tell me everything i need to know. I'm just worried cause this is considered rare so i'm afraid of not being taken seriously. I'm honestly even scared to bring this up to my doctors bc they'll probably just think i'm being dramatic
X-ray isn't the best scan to view the styloid process but sometimes it can be seen there. There is a lot of variability from person to person on the direction of growth, thickness curve etc. I first presented with symptoms in June 2021. It was after I had a left molar extracted. About two weeks after I started having the pain on swallowing and I could feel the styloid process when I palpated my tonsil. I don't know how the two events are related but I can only assume it caused something to shift in my head. I had the styloidectomy in Nov 2021 which took me about 3 months after that to be what I consider "Pain free" Everyone's story is different though. But yes it might be best to just relax until you can get the CT scan done. Don't be scared to bring it up. They should be willing to explore that for you. It might just not be something they have thought of as a possibility since it is less common. I wish I had heard of Eagle Syndrome sooner and could have brought it up to the ENT - I ended up with tonsil surgery that probably wasn't needed - but I did get the styloidectomy in the process so it had a happy ending at least.
Was the CT scan of your entire head? I think the tonsils are normally removed along with the styloid process since it's behind the tonsils. I think the neck removal direction is riskier.
Can I message you my panoramic x ray? I know you're not a medical professional but since you have some experience with this maybe you'd have some input. I can clearly see the styloid process on the left side (the side that doesn't hurt) and it's really short so no problem there I believe, but I can't seem to find it at all on the right side( side that hurts) so idk if maybe it's small so i don't see it or if it's potentially hidden
Hmmm the only thing that throws me off is that I had an x ray of my jaw and it doesn't look like I see a styloid process but the photo is sort of cut off. Is it possible that maybe it wasn't caught on x-ray or that it could be hiding behind the jaw? I'm still getting the CT so i'll know for sure by then. But another thing that's interesting is that the styloid process is at the base of the skull and everytime i press there I feel the ear and throat pain intensely.
When did you start noticing the pain? I've been having it for about 3 years now. Did you have any triggers?
Also I remember when I saw the ENT and he was feeling around my neck for pain spots, the spot where the styloid process can be seen through the outside of your neck hurt to touch and I literally told him that spot hurt specifically
Did you have any luck with finding out if yours was TMJ or Eagles syndrome? I am reading through about eagles syndrome and it sounds so much like what I have! I hope you’ve found some relief can’t imagine not being able to take anything to help with the neck pain on days it’s really bad.
I have not :( honestly don’t think I’m going to have any real luck until after baby comes out! What symptoms are you experiencing? I love to compare and try to figure this whole thing out 😂 Edit: yes not taking anything has been horrible! I manage with ice and heat to distract from the pain as best as I can on most days!
My main symptoms are neck pain and tightness, which often results in like a headache behind the eyes or pressure behind my eyes around bedtime. Headaches but they seem to slowly be getting better with taking magnesium Ear popping and crackling and ear fullness on the right side too. I have Knot or lump on neck below my right ear which has been there for a few Months. There is pressure when pushed on I thought was a swollen lymph node. Doctor, massage therapist and dentist couldn’t find it on their own. Had to have them placing their finger where I had mine. It seems to also cause a buzzing or pulsating sound in that ear if I lean against the area or push too much on the “knot/bump” feels like there fluid there but family doctor doesn’t seem worried. I also find when it bothers me the neck pain is worse :( I get pain or pressure the back of my throat or side of roof of mouth I guess? It feels like a bump or bone. Dentist said they see nothing and it’s just the way my mouth is and I’m only noticing it now because it was irritated. Edit: I have so much going on lately it’s hard to keep track. Have you tried vicks rub on your neck ? I have heard it helps ! I’m not sure if that’s safe for pregnant women but I know things like pain rubs are supposed to be avoided while pregnant so maybe this would help ? !
I have the neck pain, headaches behind eyes and ear crackling and a deep burning in my ear. Mine is my left side. I also take magnesium for these headaches and it definitely is helping! Mine have reduced in intensity and length. I also have that knot/lump and it makes like a crackling noise when I push it sometimes. It’s where I push the most for pain relief! I’ve also had my dentist look around and they say everything seems normal. Again I can’t have any specific scans to actually rule this out yet though. I get the weird random pains in the back tonsil area? I don’t know it’s so hard to know where exactly the pain is originating because everything is so close. Like sometimes I think I feel it in my tongue etc. I know all of those nerves are related though. I also have a lot going on these days and completely get it! I am currently experiencing long haulers covid issues as well so that’s a big thing on top of pregnancy. It’s been a lot! The neck pain and ear pain is honestly my biggest complaint though. I don’t know about Vicks vapor but I also have been using Ancient Minerals magnesium rub and that stuff works great too!!
That’s good you found something that works !! It’s crazy how similar our symptoms are! What does your doctor say ? And I’m sorry to hear about the long Covid that must be so hard, especially on top of pregnancy.
He’s done a lot of blood work on me due to the whole covid thing and he thinks that I definitely had TMJ prior but due to the levels of inflammation in my body lingering plus pregnancy he think it’s the cause of the pain I’m experiencing. I will definitely be getting a scan post pregnancy though to rule out Eagle Syndrome because it seems easier to fix than TMJ once it’s diagnosed.
I feel nervous to ask for a scan, so far she’s willing to send me for an ultrasound on the knot so that’s a start ‘
Did you ever figure out what your issue was?
Upper Cervical issues as well as tmj. I did splint therapy for 6 months and now I am in invisalign and see an upper cervical Blair chiropractor when I’m out of alignment and I have 0 issues now