Advice

General
1

Hiya,

Please can someone tell me if the following relates to them as im debating whether I pay privately to go to a neck specialist or a ENT and as they cost so much (no insurance) and as i only get to see one at the moment i want to choose wisely.

Can somebody tell me if they get alot of tonsil stones? Does that relate to eagles in anyway?

Mostly all my symptoms have been left sided however when trying to get tonsil stones out myself (which i only saw and found out about when i first heard of eagles and was examining my throat) I can feel a pointed ish hard lump, which feels like what a styloid would feel like (but possibly just have that image in my head) its about half a cm ish through the other side of the flesh lower down than the tonsil craters, more in line with gum of molars but round the corner. Its i guess about 0.5cm circular. It defo feels like bone type thing however my shoulders also feel like bone and that definitely just really tense muscle. What confuses me is this is right side which has been less symptomatic apart from eye twitch which moved from the left to the right side a few months ago. I cant feel anything like this on the left.

My questions are:

>is there any structures that are supposed to be there that i might be feeling, or is the muscle there hard enough to imitate a boney feeling

>do you get eye twitches

>Can anyone feel their styloid and what does it feel like

>Have you pushed on it and what was the feeling, mine doesnt hurt anymore than trying to push a fairly pointed but blunt object through 0.5 - 1cm of flesh, ive heard people are ripped with pain when ent's have probed it.

> Do you have severe neck pain that feel like a vertabrae has collapsed into your throat, i dont have nessacarily a feeling of a pill stuck in my throat just more someones gripping my throat or my necks pushed into my throat from the back.

If you need any more info please let me know but theres so many other symptoms i didnt want to bore you.

Thanks

2

I was diagnosed by a dentist from a panoramic X-ray. $125. Then I went to a specialist for Eagles and who is a base of the skull surgeon. You could start there.

3

Thanks Polly, I have had a panoramic xray done before not for eagles just for possible wisdom teeth, i have looked over and can not see anything on it at all (not that it is the best copy). I have also had an unrelated neck xray which didnt show anything that i can see, my symptoms remain and worsen and now that i feel a physical hard lump under the flesh i thought if anyone on hear has also felt this then i should pick ENT over neck specialist. If i tense my throat or swallowing i get a clicking alot of of the time like something is scratching the outside of my throat pipe nr my adams apple along with symptoms such as constant burning, tingling numnbess, face, neck and head etc.



polly said:

I was diagnosed by a dentist from a panoramic X-ray. $125. Then I went to a specialist for Eagles and who is a base of the skull surgeon. You could start there.
4

Yes i get tonsil stones - i would get them about 1 a month or 1 every other month

yes severe neck pain as if being pinched or a sore like pain

yea i also get the hard to swallow feeling as though extra weight is on the through as if something collapsed on it. Get a CT scan of your neck and ask for a copy on CD. CT scans are best quality so far - for much greater that panoramic XRAY. Also alot of dentist pano xray machines don't scan that low into the neck. ( like many of our local Dentist office dont)

What other Symptoms do you have?

5

ps "symptoms such as constant burning, tingling numnbess, face, neck and head etc. " i had that too

its gone now with the reduction i recently had.

6

Polly, who was that specialist? Thanks.


polly said:

I was diagnosed by a dentist from a panoramic X-ray. $125. Then I went to a specialist for Eagles and who is a base of the skull surgeon. You could start there.
7

Charlie276:

You have done an excellent job describing to us your symptoms and how your pain originates. Providing accurate description of your symptoms is a great start to living in the solution!

On your first issue about structures that could be in or around the area in question. I noticed in your reply to Polly that you had a panoramic xray to check for possible wisdom teeth. What were the results? Do you have top wisdom teeth? I, ironically, had no top wisdom teeth. I had my bottom teeth dug out when I was 20 years old. They were severely impacted and the surgeon had a very difficult time cutting them out. 2 years later is when all of my symptoms began. The headaches, face numbness, tingling, ringing in the ears, arm pain and numbness, severe neck & shoulder pain, etc...But most of all - I could feel 2 very hard lumps in the roof of my mouth where the top wisdom teeth should be. But how could this be when they told me I had no top wisdom teeth. I went back to the dentist who removed my bottom wisdoms and asked him if he was positive I had no top wisdom teeth. He pulled my xrays and confirmed I had none. I said, "But I feel 2 hard lumps where they should be. What in the world is that?" Of course he had no answer. And of course now I know what those 2 "eraser head thingies" are. So quite often, elongated and calcified styloids can be felt. And yes, applying pressure is very uncomfortable.

Eye twitches were a very common occurrence for me. I'm 43 now and my symptoms began at age 23. The eye and face twitches, on both sides began about 10 years ago. I was told "It's a potassium deficiency - eat bananas." Or "You need to take magnesium supplements." I was diagnosed, finally, in June of 2013. I had surgery on the left side in August of 2013 and I haven't had a single twitch, on either side, since!!!!

The surgeon removed the left styloid down to the skull base. When I feel the left side of the roof of my mouth with my tongue, it is smooth and flat. There's no boney protrusion, at all. Then I go to the right side, and bam, the boney eraser head is there. It feels like a tooth, just under the surface of the skin.

When I push on it, which believe me, it isn't very often, it feels like a small zap of energy. Like sticking your tongue on a battery when you're dared to do it when you're a kid. (Okay, yes, I was dumb enough to do it lol!!!!) I actually feel pain down into my right arm when it happens. And I also feel pain in the right side of my face. (Probably the trigeminal nerve.)

And yes, before the surgery I always had the feeling as if something was stuck in my throat. When I turned my head to the side it felt like someone was strangling me. If I laid flat on my back when I slept it felt like my spine was going to come straight up through the front of my neck. I had to sleep on my side, but that hurt too. It was win/lose.

But now, now there's hope :) Actually, there's always hope! Because there's always an option. All we have to do is look and keep an open mind. There's always a solution.

Charlie276, Charlie (if that's your real name?) We're here to help, lend support and give advice :) Any time! I'm here! I'll send a "friend request" so we can personal message if you'd like.

You're not alone. Never alone, never again. Much love,

Amy

8

Amy Forgive me if I already asked you this but they removed your Styloids from the neck right? The reason I ask is because my Doc only Trimmed mine down from the neck and Im kinda in treading in the land of regret. I feel much better no more pulsing neck throbbing pain and no circulation being cut off however I still feel the feeling of something stuck around the throat and I still will get dizzy if i stand up to quickly from a lower position.

Were they able to get it all from the neck as my Doctor seemed a little scarred to remove the entire styloid from the neck. just wondering.I wish he could have taken it all out all of it which is what I originally wanted but i guess we were not on the same page or maybe he was just unsure of himself.

AmyBlue said:

Charlie276:

You have done an excellent job describing to us your symptoms and how your pain originates. Providing accurate description of your symptoms is a great start to living in the solution!

On your first issue about structures that could be in or around the area in question. I noticed in your reply to Polly that you had a panoramic xray to check for possible wisdom teeth. What were the results? Do you have top wisdom teeth? I, ironically, had no top wisdom teeth. I had my bottom teeth dug out when I was 20 years old. They were severely impacted and the surgeon had a very difficult time cutting them out. 2 years later is when all of my symptoms began. The headaches, face numbness, tingling, ringing in the ears, arm pain and numbness, severe neck & shoulder pain, etc...But most of all - I could feel 2 very hard lumps in the roof of my mouth where the top wisdom teeth should be. But how could this be when they told me I had no top wisdom teeth. I went back to the dentist who removed my bottom wisdoms and asked him if he was positive I had no top wisdom teeth. He pulled my xrays and confirmed I had none. I said, "But I feel 2 hard lumps where they should be. What in the world is that?" Of course he had no answer. And of course now I know what those 2 "eraser head thingies" are. So quite often, elongated and calcified styloids can be felt. And yes, applying pressure is very uncomfortable.

Eye twitches were a very common occurrence for me. I'm 43 now and my symptoms began at age 23. The eye and face twitches, on both sides began about 10 years ago. I was told "It's a potassium deficiency - eat bananas." Or "You need to take magnesium supplements." I was diagnosed, finally, in June of 2013. I had surgery on the left side in August of 2013 and I haven't had a single twitch, on either side, since!!!!

The surgeon removed the left styloid down to the skull base. When I feel the left side of the roof of my mouth with my tongue, it is smooth and flat. There's no boney protrusion, at all. Then I go to the right side, and bam, the boney eraser head is there. It feels like a tooth, just under the surface of the skin.

When I push on it, which believe me, it isn't very often, it feels like a small zap of energy. Like sticking your tongue on a battery when you're dared to do it when you're a kid. (Okay, yes, I was dumb enough to do it lol!!!!) I actually feel pain down into my right arm when it happens. And I also feel pain in the right side of my face. (Probably the trigeminal nerve.)

And yes, before the surgery I always had the feeling as if something was stuck in my throat. When I turned my head to the side it felt like someone was strangling me. If I laid flat on my back when I slept it felt like my spine was going to come straight up through the front of my neck. I had to sleep on my side, but that hurt too. It was win/lose.

But now, now there's hope :) Actually, there's always hope! Because there's always an option. All we have to do is look and keep an open mind. There's always a solution.

Charlie276, Charlie (if that's your real name?) We're here to help, lend support and give advice :) Any time! I'm here! I'll send a "friend request" so we can personal message if you'd like.

You're not alone. Never alone, never again. Much love,

Amy

9

mt83:

Yes, my surgery was extraoral. In August of '13 the surgeon did my left side. In '07 I was rear ended and suffered whiplash and the ER did not catch that my hyoid had been fractured or that I had elongated styloids. The accident also loosened the left styloid at the skull base, that's why the surgeon chose to do the left side, and also to repair the hyoid. I was his 53rd Eagles surgery and he explained that in some patients that he could go all the way up to the base and in some he could only shave off so much. It depends on how the styloid elongates and the structures it surrounds. He also shortened my stylohyoid ligament, removed calcification from my jawbone, skull base, esophagus, trachea and clavicle. He explained that Eagles entailed much more than just the styloid itself, which I didn't know going into the whole process.

After I have surgery on my right ear for the Superior/Semicircular Canal Dehiscence and we finally get around to the right styloid, from the way the CT looks, I probably won't be able to get the whole thing out because of the way it grew. The right one grew in "joints." And it wrapped itself around the jugular near the skull base. The left one was all in one "spike" and was easily removable to the skull base. So it just depends on the way it's positioned and the experience of the surgeon.

And also, it may take a good while for your muscles and all of your other internal ligament and tendon structures to readjust from the trauma of surgery for that feeling of something being stuck to go away. For me it took a good 5 months for my throat to feel normal when I swallow.

10

well that makes me feel better at least :D the Doc only took an inch off each side so im not sure if that will get me back to 100% but I admit I do feel better. the only primary symptoms I have are the weighted through feeling and getting dizzy from going from a low position to a standing position. But still thats alot better than before.

11

When was your surgery?

12

Feb 17 few weeks ago

13

AmyBlue - who did your surgery? Thanks

14

Dr Forrest in Columbus, OH.