My first symptom started 4 weeks ago with TMJ disorder. A week later I got clicking throat. A week later I got burning pain at back of skull, neck and shoulders.
The last two weeks the burning pain on the back of my skull and it radiates down both sides of my neck and down my shoulders is giving me 7 to 8 out of 10 pain. But it only starts after an hour of sleep. During the day I am ok but tired in the neck and shoulders. When I sleep there seem to be a strong pulse pumping in the back of my head. It feels like I’m dying. All night long. So recently I have been taking magnesium 300 just before go to sleep and the pain drop by 80‰. I don’t know if the strong pulse in the back of the head is life threatening or not but it is scary. Can anyone relate to this?
I also get random clicking in the back of my neck during day and night. It feels like the two styloids are interfering with something in my neck. No pain yet to this.
I have clicking throat that is not going away and getting a little worst by the week. No pain yet. Eating is still ok.
I also have TMJ disorder and wonder if this is cause but eagle’s or the other way round. I’m assuming I have eagle’s because of all these symptoms everyone described here, but I seem to have a lot more going on.
I’m starting to get pinching pain below my ears now. What next?
I have never had any accident or surgery on the head or neck or mouth or throat. Always been healthy. But recently injured my hip 4 months ago and was worried and stressing about it. I’m thinking this lead me to all these terrible symptoms. Also I have been trying to sleep straight due to my hip problem but my head would turn on side or the other during the night. This may be the neck Strain that might lead to all this too.
I manage to get through the working day ok. But the days seem so much longer. Well my nights seems even longer as get up ever 1 to 2 hours and very hard to get back to sleep.
I was ordering you guy could help with suggestions and answers to my questions.
Anybody here have all my symptoms?
If I have Elongated or calcified styloid ligament, how fast do they grow? Because I have wait 6 months before my Insurance kick in.
Will I get permanent nerve damage if I leave it too long? But some people have eagle’s for years?
Sometimes I get numbness to my hand and feet. What could this be?
Has anyone been overseas holiday with eagle’s?
Is it possible to go on a plane for a long period of time? I have an overseas holiday in a few months time and I have huge concern about travelling.
Any suggestions and advice would be appreciated.
Thanks in advance.
I'm 5 months out from last of 3 left side styloidectomies (2002, 2003, 2013). And the right one was done in November 1990.
Hi there-get it diagnosed and removed as soon as you can. I had it on left for 15 years and the nerve sheath is damaged so I'm told that pain might not go away. Anything that is touching a nerve in your neck or around the carotid artery might cascade all over the body I found. Many body pains I had for years subsided once the left styloid was shortened. Especially lower back.
My experience was once they got to a certain irritating length they stayed the same and never grew more. never grew more after removal either.
In your time until insurance read up here and on line so you can be armed for all the denial you will probably get--"it is anything but ES". Don't have a clue what it is but its not that. Doubt the doctors. You will probably know more unless you are lucky enough to get a doc with ES history. which is a god send.
Wikipedia has great articles on ES, carotidynia, etc.
Try not to let them give you all pain meds-is it my fault I want to die with a normal sized liver? Unless of course it works until removal-but removal is the goal not pain reduction for life.
my ear always felt like I just got off a plane--the Eustachian tube was being pinched off by irritated tissue and wouldn't equalize the pressure or drain so I got inner ear infections a lot.
I have TMJ too and this feels nothing like it. It masked my TMJ pain pretty damn good. once I had the removal I remembered oh yeah I have TMJ pain. Kinda forgot. and I do think the irritation of the area made my TMJ worse.
My styloid was pushing against my carotid artery on the left side so I had carotidynia (im a bad speller) caused by ES. That is defined as vascular Eagles.
Can you feel them with your finger--back up towards tonsular fossia in the tender area.?
Good luck and ask away-this is a great place for resources.
Vince, I am concerned about symptom #4, as I am sure most doctor's would be if you do have numbness in hands or feet, this usually but not always signifies a pinched nerve or disc bulge. I am not a medical professional, just a 27 yr old kid, but I never got a symptom like that, nor do I get any burning pain.
About traveling, I am more comfortable on a plane than I am driving a car. I really cant drive over 60-90 minutes without having worse pain by the time I am done. I traveled to Arizona a year ago or so and I was totally fine on the flight....you know other than the turbulence and the fact that I have this somewhat reasonable fear of plummeting to my death.
lol are you british? I have family in Canada and England and I always got corrected in lit class because I would spell. Armor , armour, Honor, honour, Flavor, flavour, color, colour, and Center, centre. Still do, In my opinion that is the proper way to spell, I mean it is called English, not Americanish. But hey that's me.
Yea you know I get that one is more likely to be in a car crash than a plane crash, but I am way less likely to plummet a mile out of the sky in a car crash, so I have my reservations.
Airbus is better than Boeing. its too bad. but I'm a usa er. I hate flying but an A-319 is nicely built over a 737. Aluminum fabrication in Colorado or LA. no I misspelled it and left it. My spelling-ew! I've never been in a plane crash but lots of car totaling--hence the idea I have ES. but know one knows.
so what are your lasting symptoms--back to that thing. :0(
Vince, the best thing I think you can do if you don't have a diagnosis of ES and want to know if you have one would be to get a CT with contrast or a 3d CT scan, if you haven't seen my 3d ct scan here it is again. Also request a copy of the film from the radiologist and I am able to manipulate this image left and right, I printed out all 3 for my pain management appointment tomorrow for my doc to take a look at so he knows what he is dealing with.
Lively cadaver. Thank for your concern. The numbness is getting worse by the day on my last hand especially. I also realised my have been going to the toilet less and I have been eating same amount every day. The last two days are are blood in my poo. I’m heaps worried but my doctor is not. Something is not working with my body system. Have any of you guys had this problem? What should I do? Go to hospital as emergency? I’m lost.
Go to gastro doctor if you have blood, most likely not a symptom of Eagles and you need to consider more than one issue. I had three problems all at one time none related. There is a saying here. "Everything comes in threes" just a saying. If lots of blood more than a tablespoon, it is urgent. This is what I asked my gastro doctor once when he said something like, "If you are bleeding a lot go to emergency." I asked, Define a lot. Answer: A tablespoon. otherwise make a doctor appointment, you can always go to emergency if your gut tells you to. Better be safe than sorry. Best of luck Vince. The hand and bowel issues could be back related. Don't know your hip situation. Hoping you feel better soon and get answers. Prayers for better health and correct answers for you.
Hey shaw im just wondering why they had to the left side three times? I recently had both of mine reduced and I hope i wont regret it - i guess i miss understood the Dr. and thought he had planned to fully remove them - which is what I wanted.
shaw said:
I'm 5 months out from last of 3 left side styloidectomies (2002, 2003, 2013). And the right one was done in November 1990.
Hi there-get it diagnosed and removed as soon as you can. I had it on left for 15 years and the nerve sheath is damaged so I'm told that pain might not go away. Anything that is touching a nerve in your neck or around the carotid artery might cascade all over the body I found. Many body pains I had for years subsided once the left styloid was shortened. Especially lower back.
My experience was once they got to a certain irritating length they stayed the same and never grew more. never grew more after removal either.
In your time until insurance read up here and on line so you can be armed for all the denial you will probably get--"it is anything but ES". Don't have a clue what it is but its not that. Doubt the doctors. You will probably know more unless you are lucky enough to get a doc with ES history. which is a god send.
Wikipedia has great articles on ES, carotidynia, etc.
Try not to let them give you all pain meds-is it my fault I want to die with a normal sized liver? Unless of course it works until removal-but removal is the goal not pain reduction for life.
my ear always felt like I just got off a plane--the Eustachian tube was being pinched off by irritated tissue and wouldn't equalize the pressure or drain so I got inner ear infections a lot.
I have TMJ too and this feels nothing like it. It masked my TMJ pain pretty damn good. once I had the removal I remembered oh yeah I have TMJ pain. Kinda forgot. and I do think the irritation of the area made my TMJ worse.
My styloid was pushing against my carotid artery on the left side so I had carotidynia (im a bad speller) caused by ES. That is defined as vascular Eagles.
Can you feel them with your finger--back up towards tonsular fossia in the tender area.?
Good luck and ask away-this is a great place for resources.
My 1990 was a complete removal on the right side and went perfectly with all symptoms gone after 1.5 years of trying to find out what I had. A panorex in aug of 1990 showed it and it was removed in nov 1990.
My 2002 leftside styloidectomy turned out to be a left side hyoidectomy because the doctor went south instead of north. Never provided an explaination of his screw up. The 2003 operation removed 3cm of 6.5 that needed to be removed. I never thought a doctor would only remove half of it so I never suggested removing all of it.
My 2013 operation was with a surgeon who removed the remainder to where it is about as short as the one on the right. 3rd time's a charm?
Removal to what the styloid is originally should be the standard and I'm flummoxed (sp) as to why any surgeon would do that but it seems to be a common mistake of judgement. I feel its like removing half an appendix.
Shaw each time they did the surgery was it in the front of the neck. If so was there issues of preforming that many surgerys over previously cutt areas? Also would you think im clear to say im out of the woods yet since I still have a remainder in there
