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Eagle Syndrome - Online Support Group

Anyone recognize these symptoms as ES?


#1

For last 7 years I’ve had pain on and off around the left ear and in the outer part of the ear. Worse when pulling skin around it or massaging muscles close to the ear. Also feeling of being swollen under the jaw on that side. Sore throat occasionally on the same side. 4 months ago I started to feel numb deep inside the ear. Also became lightheaded and feeling nauseous, which has become progressively worse since then. Left base of tongue goes numb as well. On 3d CT doctor found prolonged styloid process of 40mm. It is shaped like a forward facing fish-hook. He did no palpation of the tonsil and said that the prolonged styloid COULD be the cause, but no way to tell except to do the operation and see if the symptoms goes away. Anyone with similar symptoms or experiences? Appreciate any input, as I am not eager to do an operation based on “maybe”. I also read how the styloid is shaped can be an indicator of whether symptoms are more likely or not, but I didn’t hear what shape is most likely to cause symptoms. Anyone with any insights?


#2

There are a few common symptoms with ES, but a lot of us have weird symptoms as well, sometimes unique! A lot of members have had sore throats on and off, and tongue problems as well- numbness or difficulty moving it. Also some people have had geniculate neuralgia from ES, causing pain deep in the ear (which is because the geniculate nerve is irritated/ compressed by the styloid process), so if you’re getting numbness, it could be caused by the styloid. I didn’t have pain in the outer ear, but post-surgery have been numb there, so obviously the nerve was stretched to remove the styloid during the op. Again, maybe the styloid is causing this pain for you. I had vascular ES which caused light-headedness/ dizziness- that’s quite common, and also quite a few members have had nausea.
Unfortunately doctors can’t guarantee what symptoms will be helped by surgery, and which won’t, so it can make the decision to have surgery difficult. Some doctors will do a steroid or painkiller injection into the area, and then you can see which symptoms are helped to see if you have ES or not, but other wise you can only give it a go and see! Yours is longer then the ‘average’, but also the weird angle will make it more likely to cause symptoms. There’s lots of info in the Newbies Guide about surgery, what to expect, risks etc. It’s worth getting as much info as you can beforehand, and to find out what experience the doctor has. If they operate externally they can usually remove more of the styloid process than with intra-oral surgery, and you need to make sure that the doctor will remove as much as possible, and not just break the tip off.
There’s also info in the Newbies Guide about symptoms, with results of a survey, so you can see if yours are similar to others.


#3

Dear Jules,

Thank you for your thorough answer! I will look at the inputs already written about pro/con on operation and may revert back with further question from that.

Jempa33


#4

Hi. I was diagnosed with ES last year. I have constant ringing/pressure in my ears 24/7. I also have neck and shoulder pain, especially when turning to the left. I’ve been referred for physio but am concerned this may cause harm to the styhoids I have on both sides. When raising this with my doctor I was told I’m being anxious and am fixating on the ES. I’ve also had like vertigo this past week when getting out of and into bed. Just wondering if anyone else has these symptoms and if they may be ES related.


#5

They could be ES symptoms, obviously we can’t say for sure- tinnitus is a common symptom, and also pain, especially when turning your head. Vertigo can be a symptom with vascular ES too. It would be worth seeing a physio, and mentioning your ES concerns- as long as they’re not doing anything along the lines of traction, manipulation or deep tissue massage, it might be helpful. I was given some simple stretches to do, which when done gently did help the surrounding muscles relax a bit.


#6

Hi can anyone give information about es and heart issues like racing heart all day and im having coronary artery spasms causing scary chest pain. Its just 5 years ago I was having es problems and then came the heart issues. Then my es pain gradually went away and heart pains soon after that. Now with the es on both sides bothering me again with the same heart issues. I was putting it all down to anxiety but ive a gut feeling its to do with vagus nerve or some kind of compression. Trying to explain this will be difficult but I seem to get this heart racing out of nowhere like its uncontrollable. Im seeing my surgeon on the 20th nov.to finally tell him I want the surgery asap as he wanted me to take time to calm down and prepare myself but I just cant live anymore my kids need me. I am also seeing a cardiologist who seems to dismiss me alot. I keep going back to this vagus nerve. Ive no other vascular issues but my styloids are pretty long and calcified to the hyoid bone on on side and poking in behind my tonsil on other side (worse because of discomfort). How to I say all this to my ent and I dont knowwhich side would be causing the heart issues if it is. I really wanted the poking side in my tonsil done first but now I dont know. Is there any way of seeing if anything is affecting my heart from the styloids? I was so nervous and worried about all this but now I would gladly just go in and have both sides done and be over with.


#7

Isaiah40:31 had problems with the vagus nerve- hopefully she’ll see this and add in, or you could message her.
The vagus nerve exits the brain in the base of the skull close to the styloid processes, so it is possible that it could be compressed or irritated. Also I did see one research piece which mentions irritation of the carotid arteries/ carotid sinus which could cause heart arrythmias. There have been other members who’ve had problems with their heart too from this, if you look in the search box for ‘heart’ through past discussions you’ll see a couple. Here’s a link to a post-op discussion too: http://www.livingwitheagle.org/t/two-month-post-op-update/568http://www.livingwitheagle.org/t/two-month-post-op-update/568
There’s also a bit of info in the Newbies Guide section- common symptoms and possible causes, and also in the scary subject piece, though you might not want to read that one!!


#8

I don’t want to scare you with this, but sometimes it helps to take a print out of research articles to ‘prove’ your case if you’re having symptoms which doctors won’t take seriously, so both these research articles mention cardiac problems from irritation of the carotids. Not saying this might happen to you, but doctors aren’t always aware of the full range of symptoms we can get.


Also to answer your questions as to whether there’s any way of telling which side is causing the problems, a CT with contrast would show if the carotid arteries are being compressed, which might give you a clue. As far as I’m aware, there’s no way of telling if there’s any irritation of the vagus nerve- there are right and left branches of that, so in theory it could be either side irritated. I don’t know if either branch of the nerve have a different function I’m afraid, you could do some research into that if you have time!
Having both sides at once isn’t generally done- there can be alot of swelling, but there have been a few members who’ve had it done sucessfully.


#9

Thanks Jules. If I have another scan that wouldbe 3 in a year is that safe? I think I really need to get it done though. Not sure if the vagus nerve would show up on scan but still need to know whats compressing. My cardiologist says it a sudden spasm in the artery called prinzmetal angina and can be brought on after severe emotional stress. All heart tests were normal. Its just strange how its happened both times after eagles flaring up. Im afraid to get the surgery with a heart problem and then again if I knew eagles was the cause of it I would have the surgery knowing it would stop the heart problems. Im having so much discomfort with the styloid coming in behind my tonsil. By time evening comes I just cant eat or talk and keep having to lie down to take the pressure off. Its so weird on the other side my pain has eased off alot but just sometimes feels like theres something sticking down from the soft pallet after eating or drinking.


#10

I’m not sure how many CTs are safe in a year. MRIs don’t use radiation, so maybe they could do an MRAngiogram instead, might be worth discussing with your doctor. Looking at your CT, that looks pretty long… the right side looks impressive, right to the hyoid, as you say!
I’d never heard of prinzmental angina, but just looked it up- did he give you any medication for it? Hope that you hang in there until your appt. on the 20th, and can get surgery soon. Sadly though so few doctors recognise the more unusual symptoms you get with ES, especially vascular, so if you can I would print out those research papers and take them with you. Best wishes!


#11

Hi its been a while. Ive been In with my surgeon today expecting to set up surgery and go ahead. I just wanted my left side done as its poking in behind my tonsil and driving me crazy. Otherwise alot of my pain from both sides has settled down now but its still too uncomfortable to live with this physical feeling of a tusk stuck in my throat and eating is still hard also talking I get tired. So my sugeon wont do surgery now because im not in enough pain. I am so disappointed. Even though its not too painfull its so uncomfortable. He led me to believe for a whole year that he would do the surgery and now im back to square one.


#12

That is so frustrating! Has he given you the option of coming back to see him if symptoms worsen again? It just seems that you can’t win with alot of the doctors- if you’re in pain with no vascular symptoms, they say ‘it’s not worth the risk of surgery to just stop you being in pain’, & if you have vascular symptoms, they say ‘it’s too dangerous to do surgery because of the risk near the blood vessels’!! If you have a read of some of the other current discussions, you’ll see you’re not the only one in this situation, it’s not really any consolation, but at least you’re not alone. But I really feel fro you having waited a year…
I guess all you can do is go back to the drawing board, & start searching for Otolaryngologists/ skull base surgeons in Ireland, & try someone new? I know you’d looked around for a while before though.
Thinking of you, Jules


#13

Jules I know. I am afraid of getting vascular symptoms as my styloids are so big and the pain will come back, it came and went before. I suppose he’s not as great a surgeon as he’s made out to be. Yes he said go back if It gets worse but I think the way its poking in my mouth and the size of it should be reason enough. I’ll keep looking. I think some doctors dont consider the emotional effects this causes also.


#14

Hi Jules. There is only one doctor in Ireland on the es doctors list on this site, dr Stassen. I had one consultation with him before but he’s only in private hospitals. Im thinking of seeing him again but didnt feel very confident in him. So I was wondering, is there a way that the person who gave his name on here can be traced back so I can ask about their experience or surgery with him? I cant seem to find anything on them here. Thanks.


#15

Hi,
I’m sorry but the original doctors list was compiled ages ago, I only took over updating in a year ago, so I don’t know with alot of the doctors who had surgery with them. The site had to be updated as well a year ago, so we can’t search through some of the old discussions. The first person to do the list was emma, she’s not on the site that much but does still post from time to time, you could try messaging her, she might know.
It is so frustrating that there’s so few doctors who know about ES in Ireland- Canada & Australia are as bad…
Best wishes.