Also, forgot to mention. I had a swollen lymph node in this exact spot about 18 months ago. I had it surgically removed from the outside as the thinking was that maybe it was just stuck swollen and pushing on adjacent structures causing my symptoms. After removing it I felt a little better for about a week but then everything came back. So basically I have a little scar right where I still have the symptoms. Biopsy on the lymph node was normal.
The tests you've had makes me feel very frustrated for you and I can imagine your frustration. I had most of your tests in 1989-1990. I was shown to be allergic to Kentucky blue grass which doesn't grow in CA but is in Colorado where I grew up.
My CT's and MRI's showed nothing either. The panorex is so simple and was so definitive in my case.
1 X-RAY AFTER ALL THE POKING AND STABBING AND PILLS and radiation from all the CT's.
It was the last scan I had before removal-no other view was needed to trigger my medical group to authorize surgery.
I had the swallowing study after the hyoid was removed because I couldn't swallow after it was removed.
with all the tests that ruled out everything I was told "I looked good on paper"-but the cause of pain was not identified for more than a year. I had vertigo and drove off a road once so it is life threatening but it is definitely quality of life threatening.
last year my ENT did one test-to measure the pressure across the ear drum-which would show the Eustachian tube was plugged and the pressure would not equalize. My right side was 12, my left was 119 which he said showed my left tube was being blocked by something. It was being pinched my the styloid which is why when you turn your head or open your mouth like at the dentist it feels better-you are changing the angle of the styloid as it is attached to your skull and it moves when you move your head.
I'm sure I touched mine way too much during the years I had it. I told someone here that I was tempted to push it so hard to break it off and then they'd have to remove it---but it would probably puncture my carotid artery and I'd bleed to death.
There is one story of a man who's styloid did puncture his artery and caused an Ischemic stroke. Mine was deforming my carotid artery causing carotidynia.
This month marks 25 years of having this and it is now over.
I hope my experiences have provided some help in dealing with it and not scared you. It took a while and had some unexpected twists but I got through it and about 25 doctors.
Yes, thanks again for all your input. So do the areas I mentioned seem to be in the right place? The very back corner of inside my mouth and then about an inch below the corner of my jaw on the outside. It seems like the latest ENT was telling me that it was the hyoid bone itself that was longer on the right side. I don't know if that's a related issue or if that's an issue all of it's own rather than ES.
My ear pain went from moderate to feeling like a hot nail was being shoved in my ear but when a doctor looked in it was healthy. The nerve on the inside was being irritated by the styloid.
Here is the work I did as I became an amateur anatomist trying to figure out what was wrong with me in 1■■■■; with out the internet but lots of reports on it in medical journals. I still have my copies of these and I need to toss them.
The styloid is connected to the hyoid bone by the stylohyoid muscle. it allows you to swallow. the stylopharyngeus muscle also attaches to the styloid and ends at the pharynx.
This is controlled by the glossopharyngeal nerve (IX) which also controls saliva secretion-(I drooled a lot too). And parts of the tongue and taste-I had tongue pain in the back where you can't bite it but felt like I had. I still do due to possible permanent nerve damage. I think this is the nerve my doctor injected to block the pain in 1997 and it worked and was told this was an indication of ES because the nerve was sending false signals back to brain.
All this together connects all the various symptoms to an irritated and growing styloid process; ear, throat, neck, tongue pain; not to mention that the area it is growing into is small and full of nerves, blood vessels,and the back of the ear, a 5mm diameter bone is not welcome.
this is my final removal from the back of my throat up to the base of my skull and I can't fell the tip of it at all--believe me I felt for it after all the errors of surgery I had for this
I recently read that ES can effect the vagus nerve (x) also. This nerve goes to many organs but to the larynx and the ear so I wonder if it was being touched by my styloid and adding to the symptoms.
Like I said before If I could operate on myself I'd have taken it out in 1997.
use the pics to show your doctors what it could look like. x-rays and the actual structure removed. This is the upper part of the long bone-the first 3 cm were removed in 2003.
I assume it grows different in everybody so some symptoms are greater than others but yours seem to match the basic symptomology.
What worked miracles for me was popsicles. I got that tip from another member and I'd eat 20+ per night. It was the only way to reduce the symptoms enough for me to sleep. Hope that helps.
Throat Crazy....any updates? put off the tonsillectomy?
Opioids work pretty well if the doctor will prescribe them. IF not, I found that high doses of Aleve worked well for me. You can safely take 3- 4 times the amount recommended on the bottle. That is what I did til I had my surgery. Some people say eating popsicles and ice cream helps. Make sure you don't constantly rub/massage your neck. It will just make everything feel worse.
I went ahead and did the tonsillectomy on 7/15. Still recovering from that now so we'll see how it goes. If anything I've noticed that it is now harder to swallow as it feels like half of what I'm swallowing is going down the wrong way and choking me. Hopefully that's just a temporary side effect while I learn how to swallow without tonsils and then I'll be able to see if it helped any of the original symptoms.
shaw said:
Throat Crazy....any updates? put off the tonsillectomy?
Throat crazy, I tried high dose NSAIDs for 7 days no improvement. What has helped me the most is Gabapentin ( for nerve pain). I started at low dose, 100 mg and gradually increased dose. I now take 1200
Sorry, sent reply before I finished. I now take 1200 mg ( one 600 mg “horizant” long acting tab twice a day. A low dose of Ativan helps relax my throat muscles when they get tight and I feel pressure. Surgery is the only way to alleviate the symptoms. Meds are just tx the symptoms, not the cause. Good luck!
I hope this resolves what ever tonsil issues you had and hopefully the pain that could have been ES but wasn't. I've been told adult tonsillectomies are horrible pain wise compared to kids. Its not the ice cream life kids get. But adults get the better pain meds. heal up and get better
ThroatCrazy said:
I went ahead and did the tonsillectomy on 7/15. Still recovering from that now so we'll see how it goes. If anything I've noticed that it is now harder to swallow as it feels like half of what I'm swallowing is going down the wrong way and choking me. Hopefully that's just a temporary side effect while I learn how to swallow without tonsils and then I'll be able to see if it helped any of the original symptoms.
shaw said:Throat Crazy....any updates? put off the tonsillectomy?
Hi Shaw, Who performed the glossopharyngeal block for you? Thanks. Josh
Josh - it’s been more than 3 years since Shaw made this post. It’s possible you won’t get an answer, but people from that long ago do still check in even if they’re not posting so you might get lucky!
Hi Josh, hope you are getting some r3esults from a encouraging doctor. The Dr. that did my nerve block in my tonsil area was: Dr. Madison Richardson in 1998-maybe. He did that block to see if it would have any pain relieving effect prior to him doing surgery-it did. Then just before my scheduled surgery he decided not to do it-don’t remember why. You might try Dr. Gary Belack at Cedars. He is a very good ENT and was a constant advocate for me-he wouldn’t do the surgery but helped me get through the Dr. maze The Cedars ENT that did my last shortened it to the base of skull.
Thank you for the information. Did the surgery go okay for you and would you recommend it if that is what is recommended for my wife. Part of me thinks that a block every 6 to 12 months may be a better option if the blocks work. My wife had tmj surgery because that is what they thought was causing the pain and it ended up making things worse, so we are kind of reluctant to pursue any form of surgery at this point. Thanks again for your response.
Hi jdpratt07,
I don’t know how able you & your wife are to travel but there are couple of experienced ES surgeons in England - Mr. Corbridge & Mr. Axon. I know the medical system in the UK is different than in the US where I am, but perhaps you could get a consult with one of them & ask for an opinion as to the best way to proceed.
I’m sorry to hear your wife had bad results from the first attempt to help with her pain. TMJ is not uncommon among people who have ES & is often the diagnosis given by a doctor not “in the know.”
Hi jd, I have TMJ and ES pain is so much more. I could feel the tip of the 7.5 cm styloid on left side. I could feel the 4cm on right side too. I would recommend having the bone made the length it’s supposed to be or shorter. The right side surgery was pain, surgery, no pain. Ok the incision did. Things I’ve read are anecdotal and read them in medical journals pre Internet in 1990. It depends on the orientation to have symptoms…the styloid can rub on nerves and make pain worse over time. If it’s not supposed to be there take it out was my plea.
PS
Does your wife have good image of styloid?
When I first started having symptoms in 1989 I had: ear infection, some unspecified allergy, imagining it, etc. I described my symptoms to my orthodontist in colorado he said you have Eagles syndrome and you need a panoramic xray to show it. He called a head neck surgeon in LA and set it up in Sept 1990. Removal was end of November 1990. The left side is what I have reported. The doc is not on list thank god. 17 years is too long to hunt for a doctor. I only got 1 or 2 nerve blocks as the nerve doesn’t keep getting numb and removal is permanent.