Nicole, 25, CT, New to ES

Hi everyone, happy holidays. I have no clue where to begin with this. I went to my mother’s ent almost a month ago now, because my right ear was feeling plugged, hearing muffled, and the sound of blood flowing? I had a hearing test done that showed very minimal hearing loss, I think something about 25 is normal and I was at 30… Anyways the doctor looked at me, says everything externally looks good, talks about my past surgeries when I was a baby, adenoids removed, tubes in ears tonsils the whole bit. Then asks to see my teeth, says I don’t grind, I laugh and say actually I do, so i must have tmj the solution is to get a bite guard. I don’t even have dental and that’s not the issue. So the Dr can tell I’m not very “satisfied” and starts to talk about these “rare bird” scenarios about bones and muscles in the ear. Reluctlantly says we can do a ct scan and I say yup there you go, no point in treating something that’s not there when we can just look and see for ourselves. Get my CT scan results and… eagle syndrome. I don’t go back to see said Dr until Jan 3rd. I also have ankylosing spondlyitis, and my group has no idea what eagle syndrome is. And if you don’t know what ankylosing spondylitis is, it’s an autoimmune inflammatory arthritis that affects primarily the spine, (I have it everywhere) and causes fusing of the spine in severe cases. I already have bone growth or spurs in my thoracic area. Could elongated styloids and calcified ligaments be related?

Hi Nicole,
It’s sort of great that at least you have the CT findings confirming ES- at least you know what you’re dealing with, some members battle for years to get a diagnosis…
There are a few theories as to the causes of ES- there are mentions of metabolic disorders causing calcification, and certainly alot of members have problems with bone spurs elsewhere, so it seems possible that there could well be a link to your spondylitis. Sorry that you have to deal with that, and now ES…
There’s lots of info in the Newbies section, and mention of research and theories if you want to look into it more.
Did your doctor discuss treatment with you, are you very symptomatic and are you thinking about surgery?

Hi and Welcome Nicole.
I am sooooo glad you found this support group. It will be one of the best choices you made; as you travel this journey. Since I am a newbie to the group my best offer to you is as with ALL others, PRAYER.
As Jule said congratulations on a quick diagnosis. Your next step is to determine if you have classic or vascular. (your symptoms will definitely help with determining which). My best advise is that you stay calm and stay connected.
Hand shakes and hugs my friend.
BTW. PLEASE share with your family and friend circle. his diagnosis can be fairly tricky when it comes to symptoms; they can and will probably be your GREATEST source of strength; besides in whom you believe.

Shalom Nicole,

Sorry that ES is something you are dealing with. It took me 17yrs. to finally be diagnosed with
ES. Blessu2 is right when she says that Prayer is a big help. I prayed so much for my healing
because the doctor’s did not know what was going on with me. I suffered allot and my life was
so difficult because, all I knew was that it felt like I had a fish bone stuck in my throat and no one
could properly diagnose me. I went to ENT doctors who then sent me to a dentist, then a thoracic surgeon and when they could not find the answer, they said I needed counseling!

I was miserable until I moved to OKC from Houston, TX. I found my ES physician at OU Medical. He was the only one who prayed for me and got into agreement with me that I would find a diagnosis. He did…His name is Dr. Greg Krempl and then he sent me to another OU physician named Layton Runkle MD. (rettired) to do the surgery.

I don’t have that sensation anymore, but I do have to be careful not to agitate my throat by eating large pieces of food. I pay attention to what goes down my throat. Call it caution or fear, but I have learned to pay attention to how I eat. I NEVER want to have to be in pain like that, ever.

Now that you have a diagnosis, pursue your healing…Never allow doctors to send you down a rabbit trail again. You have your diagnosis. About 3 months ago I was having a slight sensation on my left side so, I tried to see another ENT and that was a joke, he was trying to send me to a dentist…Really??? I cannot go back to Dr. Krempl because my insurance is out of network at OU Medical. OU is a research facility so, many insurances do not cover in-network. I will just have to figure out what I need to do, but for now, I am fine.

I pray that you get quick relief and that you find a good physician to guide you. Dr. Krempl was at the Otorhinolaryngology Clinic in Oklahoma City, OK.

Best of luck to you

Im short and straight. I went 40 years pain. Had tubes in ears, treated often ear infections that I never had. So many things. Finally my new Dr. Listened to me when I told him pain started on throat then to ear. He ordered ct and bingo, we found the problem. I searched for right ent to fix this and glad I 2nd opinion because first was not right and I could have went and 4th but got lucky on 2nd. The list here helps to try and give idea, it does help, your not alone…


Does your insurance forbid you to go out of network? I had to pay extra, but I could go. I have BCBS through NC Teachers.

Nicole this sight is life. Many doctors may try to down play it, but have your screenshots available. Just today I had to fight the good fight. I took a VGN order by the ENT. The right ear showed signs of weakness and confirmed why I was feeling dizzy/nauseated YET I was told NOTHING was wrong. GRACIOUSLY I have friends and family in the medical field who advised me to invest in s specific medicine. Upon getting it the nausea subsided and I could pinpoint the dizziness better. When I met with the ENT he tried yet ANOTHER test that I failed! and finally said I show “signs” of BPPV!!! But still insists that he can not say for sure, nor is he prepared to perform a styloidectomy on my RIGHT EAR. Had this sight not continuously reminded me that IT"S a FIGHT, Idk!! Stay encouraged, stay connected AND BY ALL MEANS VENT.
Jules and Isaiah have helped a lot. The research section has helped a lot too.

Yassuh ANG!!! I’ve been on pain meds for 10 years. withear infections (false sinus infections) Migraines and dizzy spells in between, I can’t imagine 40 years, nor can I imagine bad ist 0would have been without the meds. Question is …how long will it be before the nex surgery. What may God have to do to get their attention THIS TIME? I still have dizzy spells and the pain near my ear that made my heart stop is still occurring. MY ENT has up. He is adhement about no doing the Right side.

I am no longer having pain. I do produce more saliva, than usual, but it is okay and I would of not known that, that is a symptom that comes with ES. I did call my insurance company to find out if they could advise me and they said that they could do a special claim for me because of the rare nature of ES. I guess I was one of the lucky ones who got relief. Lot’s of prayer…

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You have no idea how many prayers are going up for my friends on here. I went up Sunday and asked for prayer on behalf of the individuals on this sight. I need God to move and am greatful that he is doing what he does best which is answering our prayers.
The opposite of unseen diseases are unseen miracles!!! (Joseph Prince, preacher on TCT, TBN)

Thanks everyone for replying it helps so much with feeling so alone in this. I went back to the same ent and he made very light of the ct scan findings basically poo pooing on it and was adamant about this tmj rabbit trail that he’s chasing. He said he did one surgery for this and by the look of fear on his face…lol. he reffered me to another doctor that specializes with EARS. He wanted to make that part clear? Ughhh. So that’s where I’m at. Supposed to make another appointment for my EAR. My symptoms and reason for seeing him is clicking in my ear, sound of blood flow in ear, fullness/pressure, problems with my eardrum balancing, (it’s very mobile according to the hearing test tech) shortly after my left eye felt as if it was being pushed out and like I had been punched at the same time. It even looked bruised a week later. Nerve pain whole left side of face, chin jaw cheek eye temple, my skin felt like it was burning. My face hurts, pressing on my cheek or nose can cause pain, my neck around my jawline hurts, I screamed in pain when my boyfriend accidently bumped my neck/face with a light touch. I have horrible sharp stabbing pains on the right side of my face around temple, above the browbone. First time it happened I flinched like someone just hit my upside the head with a blunt object… it’s not unusual for me to have headaches for a month straight, Everyday, on top of said stabbing jabs in skull, my voice goes in and out, my mouth is sore, it hurts for me to eat food sometimes and I just have a general feeling of being slightly strangled around my whole neck& throat. My chest has been heavier and I’ve been short of breath. Seems like it takes barely any physical activity to feel like my heart is beating too fast and I get winded.

So sorry to hear you’re struggling with all these symptoms, sounds really horrible. Maybe if you get this referral it might still not be a lost cause- the surgeon who operated on me was an Otolaryngologist, and it was him who picked up on some of the vascular symptoms I was getting as being possibly down to Intracranial Hypertension. The symptoms were dizziness, pulsatile tinnitus (hearing your heartbeat in your ear), brain fog, pulsing in my head, pressure in my ears etc. So an appt. for you could still be helpful- get prepared, take info with you about ES and some of the symptoms you have, print out some of the research papers published by doctors which help your case etc., and maybe you’ll find someone more helpful?

TickledPinkk -

Happy New Year!!
I had many of the symptoms you listed above associated with my ES. My first symptom was neck pain, & like you, I poked around a bit & ultimately found a hard lump just under the curve of my jaw & near a lymph node. Later after I learned more about ES, I could feel the styloid in my mouth at the base of my tongue & in my throat. Initially, I thought I had a clogged salivary gland. My primary doctor prescribed antibiotics (which I didn’t take) & a month later, I pointed out the hard lump to my OBGYN who said it felt calcified & sent me to an ENT. I was blessed by seeing an ENT doc who was familiar with ES & diagnosed me outright then had me get a CT scan without contrast to confirm. He was very excited to tell me I had an impressive case of bilateral ES even though only the left styloid could be felt externally. I ultimately saw a different doctor for surgery but having my styloids removed has definitely improved my quality of life.

There is a doctor on the ES Doctor List in CT. I have included the contact info below. Might be worth a trip to see him.

New Haven - Smilow Cancer Center at Yale
Dr Benjamin Judson
203-■■■■■■■■ rectory/public/profile.asp?pictID=71294

I hope you’re able to make some progress in getting the proper treatment.


Thanks I’m gonna make that appointment with the other ear specialist and see what he thinks. In the meantime gonna look into judson at Yale. Love to have a doctor be interested in giving it a look although the thought of that makes me wince.

Praise Yah for OBGYN physicians!!! They listen to us women who are having medical issues and it’s not all in our heads! I have an OBGYN, Dr. Dean Carpenter at Mercy Hospital in OKC that helped me when I was in tears because of the pain from ES. I became friends with his wife because she was his nurse in the office.

I had gone to so many physicians and my problem was that none of them were listening to what was going on with me. I could not get them to write me a script to send me to OU Medical Otorhinolaryngology Clinic. One day I was in tears and I called Dr. Carpenter’s office because I needed the referral to go to OU.(the University of OK) Dr. Carpenter’s wife Desi got on the phone and asked me why I was crying? I told her that I could not get any physician to refer me to OU. My insurance required a referral and OU will not take you without a referral because they are a research facility.

Desi told me she would talk to doc and she later called me and asked my, “What do you need from doc?” I told her a referral with certain information. And that was that…I would have never been diagnosed with ES if it weren’t for my OBGYN. I was worn out and stressed from the pain and the sensation of a fish bone stuck in my throat. I couldn’t feel the styloid, all I knew was that I was desperate.

So glad you found the help you needed! It often comes from the places we’d least suspect!! So glad you are feeling better these days! God is so GOOD!!

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Well I called the office, and told the woman who answered I’ve already been to an ent and I have elongated styloids with calcification and she was just like so who do you want to see about that? I said who ever can see me soonest and she said it doesn’t work like that, gave me the number for the general ent and said bye. I’d email this benjamin judson if I could but I can’t find an email or direct number. And my boyfriend won’t take me to their ent because I live in Hartford not on the coast just to go see another ent so he made me some random appointment with some random doctor. Ughhhh. Kill me now. Seriously. It’s just getting worse and nobody will listen, nobody will help. I’m ready to bash my head into the wall.

Soo frustrating… I don’t know if any of these links are any good for Judson:

There seem to be quite a few different phone numbers for him… It is probably better to try to see someone with experience as you do have CT results to show elongated styloids.
It’s no consolation, but so many members on here do have a long journey to get diagnosed and treated; you’re halfway there with the diagnosis, keep on fighting.

Thanks, I called the Yale ent place yesterday, this time I’ll try the other number I just feel stupid calling a cancer center when I don’t need surgery for cancer? The ent specialist didn’t even want to see me even though a had a ct scan with a diagnoses that I said my ent couldn’t help me with already.

I’m so sorry you’re continuing to get the run around especially from an office that should be familiar w/ ES. I guess you should have asked to see Dr. Judson in particular. I hope the info Jules gave you will help you get in contact with him directly. It may be that Dr. Judson specializes in cancers of the ear? Who knows. The surgeon who did my surgeries specializes in throat cancers & vocal chord issues, yet he has done more ES surgeries than any doctor in the world.

I hope this encourages you!

I know it’s been a while since my last visit but, based on the post ALL seems to be well. Tickled pink hang in there. I’m still fighting too but by his grace I’m mobile! And in less pain. I started myself on some Bayer aspirin, because my spells continued after surgery. They actually became very frequent and remain unpredictable. Now they are once a week ( if that) and as of now, I can prevent myself from passing out or my heart from stopping again. Unfortunately they do not believe it is ESSENTIAL related. Idk. But God’s grace is my dependency. I was diagnosed with bppv ( but NOT by my ENT) I have nurse friends and family who told me what to go to the drug store and get. My ENT did test but didn’t believe the results!. When what they said ( nurses) worked THEN THEY HELPED AND DIAGNOSED ME.
I said All that to say. Have you Google Drive some at home remedies?