Neck pain is the worst ever! Anyone else? Will surgery relieve this?

General
1

My symptoms consist of an earache in my right ear pretty often but not severe. An occasional ringing in my ears and a headache that recently has started at the base of my scull and moves up. For over a year now I have had the sensation of something in my throat. It started very small and is only bothered me when I would swallow. Then it progressed to the sensation I feel all the time. Sometimes stronger than other times, but always there. More often now it feels like I am being poked and my throat. It is more on the right side and high in the back of my throat. I had the thought in the back of my mind it was a tumor and scared to go to the doctor. The worst however is the neck pain in the shoulder blade area that flares up for no apparent reason. Looking downward seems piss it off. It flares up and feels like a burning sensation.

Does anyone else experienced a similar pain in the neck between the shoulder blades that seems to send pain up to the base of the scull. Feels like a burning that radiates out. It can be just fine and moments later flare up. It is at its worst when I also feel that Poke and my throat. Saw some twinkly floaters like stars today that lasted a minute. Anyone else see stars and get sudden dizziness. I have had a physical and everything checked out okay with bloodwork. Never had a neck injury. Pain is baffling me.

Saw first ENT a year or more ago who saw nothing and prescribed an antibiotic. Back to a new ENT recently because it never did get better and is only worse. This new ENT mentioned possible Eagles Syndrome two weeks ago and prescribed steroids and Aleve twice a day. Two weeks have past and no relief. CT Scan is scheduled for Monday January 27th. Been reading about this and I’m now waiting to see if ENT is correct and am fascinated at how many others have similar symptoms. Never heard of this. Will be glad to have an answer if the CT shows anything. I cannot decide if surgery is the answer. Hate the feeling of something in my throat and most of all the neck pain. If surgery could fix that I would do it. Has anyone had the burning pain and gotten relief from surgery?

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My case definitely involves shoulder and neck pain, as well as a lot of pressure in my skull base, especially when looking down. It radiates to my face and eyes. It has progressed to where my traps are completely locked up, and I have difficulty using my arms (they’ve become weak). Don’t know yet if surgery will help, I’m still waiting for a date. Fingers crossed that there isn’t actual nerve damage, but that its just very tight muscles from the constant aggravation in the neck. Good luck to you!

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hi there, I can ditto all your symptoms...I just recently got confirmation on the ES and now I am in the research phase...reading EVERY word of the kindred-souls on this site- what a God-send. Anxious to hear your results, please keep in touch...I too am in KS!! I went to 5 ENT's before I got the answer...had braces 3x for severe tmj- which also seems to go with fellow ES-sufferers...and that pain!! I sure can relate...I told one ent, "It feels like a hot knife in the back of my skull".....his comment, Oh, I am sure you would know what that would feel like- sarcastic AH :(( He WAS the same ent that when my dentist/ortho sent a letter- 3 years ago... to him suspecting ES...he blew it off. I feel like surgery is my only option at this point, and it sounds like MANY here have gotten relief and would do the surgery again.

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Hi. Your symptoms sound quite familiar. I have not had the burning sensation though. Eagles is a rare disorder and many ENTs don’t diagnose it and are not competent to do the surgery. I have had surgery on the right styloid but I continue to have pain on my left side of my neck, right at the top of my shoulder blade. It’s like a drilling pain right at the top corner of my shoulder blade at the base of my neck. I went back to see Dr. Samji in San Jose Californiau and scheduled another surgery for the left styloid. I have mild to moderate ear pain on the left side and can feel the bone in my throat. If I put my finger in my throat where my tonsils used to be I can feel the left styloid and it feels like an eraser head of a pencil. All your symptoms are symptoms of a Eagle Syndrome. Symptoms from the right styloid were ear pain,dizziness, and vertigo. Surgery on the right resolved all of these. I have some minor phantom sensations around my scar but that’s okay with me. On this website there is a list of doctors that have experience with Eagles. A surgeon needs to be competent in base of the skull surgery. Many of us have found relief with surgery. Keep us posted. Good luck

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Hi there,

Ct scan will deffinitley show if its es.You appear to have general symptoms , plus a few extra ones. To have or not to have surgery, it really comes down how much it impares your day to day life. Its a tough choice only you can make . Get as as much pros and cons info on es.speak to specialist neck and head ones,and go and see few who have actualy performed the procedure.Dont be affraid to ask a lots of questions. Ima beginig to sound like i am preaching to you,sorry that is not intended.Good luck whatever you decide.

Kind regards Lilian

ps sorry , if there are spelling erros!

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Me!! You sound like a script I could've written myself. Please be mindful that sometimes normal scans do not reveal Eagles. Mine was diagnosed finally on the third scan, when they had me face down with my mouth open.

I am still recovering from my second surgery and I can tell you this nightmare already seems like a thing from a distant past. I feel fantastic. Please, don't give up. You are in the right place. I found my doctor here and everything I needed to feel better, including emotional support.

Hang in there and let me know if you need more information.

Best of lucks!

1 Like
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Hi, art4!

Haven't read much from you lately! How do you feel? Any better? I had my second surgery on the 13th and I can tell you that I am absolutly thrilled. The first side Dr. Cognetti worked on is completelly healed...I don't feel any pain at all! Looking forward to the heat of the Summer, the ultimate test.

I'll keep everyone posted!

art4u said:

hi there, I can ditto all your symptoms...I just recently got confirmation on the ES and now I am in the research phase...reading EVERY word of the kindred-souls on this site- what a God-send. Anxious to hear your results, please keep in touch...I too am in KS!! I went to 5 ENT's before I got the answer...had braces 3x for severe tmj- which also seems to go with fellow ES-sufferers...and that pain!! I sure can relate...I told one ent, "It feels like a hot knife in the back of my skull".....his comment, Oh, I am sure you would know what that would feel like- sarcastic AH :(( He WAS the same ent that when my dentist/ortho sent a letter- 3 years ago... to him suspecting ES...he blew it off. I feel like surgery is my only option at this point, and it sounds like MANY here have gotten relief and would do the surgery again.

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My styloid was poking me in the tonsil. Since it is gone my symptoms are better…not gone. I have a lump sensation in my throat and have been diagnosed with GERD. It is only in my throat, I can feel the bubbles from my glands. This all cause discomfort in that one side of my neck. I had migraine auras twice before my styloid was removed and my eye twitched a lot. That seems to be gone. It is all so frustrating since no one seems to understand it and you don’t want people to think you are a little off by complaining too much. We know our bodies better than anyone. I would recommend getting it out if it is Eagles. It sounds like your vascular system is being blocked off and that can be serious! Good luck and keep us informed.

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i had a constant swelled sore spot on the back of the head/base of skull, and another on the top of the head left side. sore all the time, hurt to comb my hair

post op, all the sore in the head and neck was gone almost as soon as i woke up from surgery.

the dizzy's, my symptoms were triggered when i turned my head back and to the right, i would see spots, dizzy and if it stayed in that position very long, i would go to the deck.

the worst was one night while sleeping, i had an out of body thing, i was over my body yelling "wake up, wake up now or you are going to die"

i did wake up and my head had moved off the pillows and was tilted back and right, it had been in that position so long, it was stiff and pretty much stuck. i had to reach up and pull my head back to a neutral position.

my head was pounding, felt like it was going to explode, i could hear the blood whooshing through my head, it took a long time for the blood to start moving and the whooshing to stop. i was extremely close to stroking out.

we had already gotten the CT scan showing the extra long styloids but nothing more

i insisted on another CT with the contrast. the new CT showed that in a straight ahead neutral position, the juggler was pinched off 50% on the right and 75% on the left.

that was in neutral, turning my head would pinch it off even more and that was causing everything to get worse.

another thing i had, and all the doctors said that it could not be related to eagles, was eye pain sensitivity to light and vision changes in my left eye, it was worse as the day went on.

i got new glasses in april 2013 before the surgery at the end of may, 2nd surgery was july 8.

post op, the eye pain, sensitivity to light at night and vision changes all stopped.

the new glasses i got in april dont match my eyes after surgery, right eye is ok but the left eye is about 2 or 3 levels off...

again, thinking it was the whole blood flow thing

pre op, the prednizone helped out a lot, one of my doctors local tried a steroid injection, (way fun),

long needle of steroids up through the area under the jaw, up to the base of the skull. the stuff was injected right into the area of the styloid to get a more localized result

this did really help for a week or so.

doc said it was another diagnostic to determine if the problems were from the styloids or not.

bottom line.

styloids suck

getting them cut out is not much fun but so far, it has been well worth it to get them fangs yanked out

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Me too. One fang out. The other is coming out too. Thank you for your post. This journey is totally surprising and lonely. Thank goodness for this site!!!

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Thank you for all the response. I Feel optimistic that I will get some answers after the CT scan Monday. They said to allow Three days for the doctor to read the results. Going to a diagnostic imaging center in Kansas City. I Feel relieved that there can be an answer for this feeling of something in my throat and neck pain that have disturbed me the most. Seems to explain my other occasional symptoms too. Someone mentioned the twitching eye. I get that a lot. Thought it was because I work on a computer. Glad this second ENT seemed to know right away what it could be but don’t know if he even attempts this surgery. Didn’t ask. Guess I wait for the scan. Pain in my neck is awful. The pain doesn’t make a stiff neck or an inability to turn my head or work but is just a constant jab and burning from between my shoulder blades up the base of my scull that is increasingly unforgiving and makes me crabby. Pain really wears a person down.

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That pain is horrible. I had same type of pain from jaw, side of skull base, neck pain that radiated to shoulder & blade, arm pain, arm pit pain , chest/rib aches & pain. If I looked down for too much &/or moved my shoulder with trying to drive, house chores, or any upper body acitivity would put me in a bad flare for days. I have dealt with terrible pain for 6 years and most doctors did not believe it or thought I was drug seeking. Also, I had POTS, difficulty swallowing, tinnitus, tongue pain. I had my left styloid taken out on 11/25/13 by Dr Samji. My left side feels so much calmer and don’t have the excrutiating flare up on my left side of body. I have had an occasional pain but ice pack alleviates it and not having to take pain meds like before. I have a thick styloid on my right side and now I compare the before and after. My left side of body is calm and collective and the right side gets my entire upper right side peeved. But atleast I have one good side. I am having my right styloid out in March.

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amy,

the difference post op side one was about the same here,

when I woke up, I told the doctor that the right side of my head felt all light and the left side felt heavy,

described it like a balance scale with a weight on one side and nothing on the other,

when they took the right side out, everything on that side started feeling better almost immediately.

everyone is throwing in the ringing in the ears, don't expect that to go away,

it might but don't count on it,

I have had the ringing all my life, the surgery did change the tone a bit and it seems a little quieter but no where near gone, but that is ok, I can deal with that one since most of every thing else has gone away

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Hiya,

I have similar symptoms to you although i've not been 'diagnosed' with ES yet. I have the bone poking into my throat just behind my tonsil, it doesn't necessarily give me stabbing pains but i'm aware of it if i swallow... I also get a clicking from the Hyoid area when I swallow too. I was also getting the burning you mention.. . it was always on the same side as the bone, would go from back of throat down neck and into shoulder... I think i make my muscels bad then as you stre4tch and move to try and alleviate it but it desnt go. My doc put me on 20mg Amitryptiline each night to try and deal with this neuralgia and it seems to have helped quite a bit... I still have the foreign body feeling and the clicking but nerve burning has subsided.

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CT Scan with contrast completed today. Now it is a waiting game. Tick Tock. Even though I want answers I don’t know if I want it to be ES. Be just fine if it is a bad tonsil but that wouldn’t explain the neck pain and head aches. I hope they see something so I can stop feeling crazy about this feeling as if something is poking the back of my throat.

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CT scan shown no abnormalities. ENT wants to try a steroid injection in a tendon in my neck to see if it helps. Set for tomorrow. I am stunned it isn’t ES after all the symptoms I have. Time will tell.

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My first TWO scans did not reflect ES either. I needed a THIRD scan as well as a third doctor. Do not stop looking for answers. Change doctors as many times as you want. That is the story if our lives... Your symptoms are exactly the ones I had!

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what mayela said

keep looking,

every doctor i went to said that my symptoms were not "classic" eagles but if you check the list, i had almost all of them and more,

doc cognetti even said it was not classic, he took me in anyway and we did surgery #1 and we had great relief. the second surgery got even more relief.

if those fangs are growing in there, they are messing up everything in their path....

doctor cognetti told me that this is something we still know very little about and still learning what it is all about

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Hi. I still go back to how I found out it was Eagles. It was a panoramic X-ray. I asked my dentist to do another so I could see the left styloid since I had the right one put almost 3 years ago. My insurance wouldn’t cover it. I said do it anyways. 104 dollars. You could try that. Or look for another doctor.

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Also it depends on the type of CT scan. The first one dr. Samji did was a facial scan. This last one 3weeks ago the tech said that Dr Samji developed his own protocol for positioning. Get another opinion.