New ES member - *updated with CT pics*

General
1

Hi, All.
Here is my backstory:
About 4-5 months ago, I started noticing pain inside my right ear. The pain increased steadily for a few weeks, and has been at about the same level since then. At first, it was a dull ache and I thought I just had an earache. ENTs found nothing wrong with my ear. The pain is more of a sharp pain now.

One of the causes of mystery ear pain that I came across in my internet research was Eagle Syndrome. This was interesting because I had already noticed a hard spot under my jaw that made the pain worse. After I read about elongated processes, I noticed that, with my fingers in my mouth, I could clearly feel the process in the back of my throat on the right side. The ENTs ordered a CT scan with contrast, which confirmed ā€œelongated styloid processes (R>L) and calcified stylohyoid ligamentsā€.

So, Iā€™m wondering if the following symptoms are consistent with ES:

  1. I have just started (this week) to feel a bit of pain in the throat. The symptoms are almost entirely restricted to ear pain.

  2. My ear hurts worse when I bend forward, tilt my head far to the side, or sleep on that side.

  3. I have had TMJ disorder for many years, but never had ear pain as a result. Now, if I crack my jaw a lot, I have increased ear pain the next day.

  4. And the really strange oneā€¦Every day, the pain drops down to about 5% at 4pm or so (always between 3-5pm). In the past two weeks, this hasnā€™t happened every day, but for months before that, it was a guarantee.

Let me know what you guys think. Thanks, everyone!

2

Eagle styloids are connected by tendons to the hyoid bone, which ā€˜floatsā€™ with gravity or relaxes when asleep. This may change the way that the styloid feels as the day progresses.

3

The styloid processes can compress or irritate nerves in that area, including the nerves to the ears, so having ear pain is quite common. Some members have more stabbing pains, and some have ear ache. Feeling pressure/ fullness in the ears is pretty common.
Having pain come and go for no apparent reason is common, and I always used to get more pain in the evenings. Not being able to sleep on the side with pain is quite common too. Youā€™re probably compressing the nerves even more doing that. (A lot of members have found sleeping a bit raised, using a wedge pillow, and I found using a V-shaped pillow helped take the pressure off the sides of my neck too).
Not everyone has all the typical symptoms- I never had pain in the throat or pain swallowing. It does sound as if your symptoms could be ES, especially given the CT results.
Thereā€™s lots of info about ES symptoms and treatments in the Newbies Guide section.

4

Thank you both for your interesting replies.

If I may ask for another symptom explanationā€¦
One of my symptoms is that the ear pain increases for a moment as I breathe in and then for another moment as I breathe out. The deeper I breathe in, the more the pain is increased. My guess is that, as I breathe, my throat is rubbing against the styloid process. Just a guessā€¦

5

I donā€™t know, it could be that, or an altering of pressure, blood pressure. Weā€™re not doctors so just guessingā€¦

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6

Hi ive been written off by the ent who i trusted could help me as he diagnosed me straight away when he felt the bone potruding behind my tonsil and he seemed to know alot about eagle syndrome. Going by my scan result he said he wont do the surgery and will refer me for a second opinion and would write back to my doctor. He wouldnt even go through the scan with me i was told all this by his secretary on the phone. Im guessing my scan was so bad that he doesnt have the experience to deal with me. Im back to square one now and devastated.

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7

Sorry to hear that. Iā€™m encouraged by the stories on here and trust it will work out. Iā€™m in the same boat as you though at this point. My ent said he canā€™t help and that surgery for me would be very dangerous. I have two kids so I do the best I can. I hope you find help soon!

9

Sorry to hear this- but please keep strong and keep hoping. So many members have similar stories, and do eventually get to have surgery. At least your ENT realised that perhaps he didnā€™t have the experience rather than operate on you and maybe make a mistake. Have you looked at the doctors list to see if thereā€™s anyone else not too far from you?

10

Thanks everyone. Am i entitled to see my scan and have it explained to me? I feel this is being held from me. My gp is not experienced at reading scans and he thinks im crazy anyway! I also have two kids and trying to be normal but very hard i cant stand all the waiting. I now have symptoms on both sides i think one side is pulling at the other. I wake up in the middle of every night and just cant believe this is happening to me.

11

If you are in the US (not sure about other countries), they must give you a copy of your scan if you ask for it. I donā€™t think they are required to explain anything to you, however.

12

Shalom fivetiger, I welcome you to this site. I never had any ear or jaw pain prior to
finally getting the correct diagnosis, after 17 years of pure hell and pain. My pain came
in the form of feeling like I had swallowed a tiny chicken bone, fish bone, or a small
foreign object. I had not eaten any fish, chicken, or anything that I could associate with
what had happened to me, but it was pain and agony.

I went to so many ENTā€™s and they sent me to dentists, but none of them could figure out
what was wrong with me??? Until I moved to OKC and I went to an Otorhinolaryngologist
at Univ. of Oklahoma and I finally was diagnosed, I had the surgery to remove the styloid
and up to about 2 years ago I also found out that they removed my tonsils to go through
my mouth. It was a very hard surgery, but I was younger and I survived it.

I no longer have that poking, sticking sensation that felt like it was under my tongue and the back of the throat. It was miserable and my heart goes out to anyone who is at the beginning
of this horrible syndrome. The only thing that I now deal with is that I produce more saliva
and itā€™s just a very mild thing to deal with, not a huge problem.

I had cataract back in November and the anesthesiologist had to bring me out a little earlier
because he became concerned that I would choke on my own saliva during surgery, It was weird to have the surgeon still working on my eye while I was being awakened. Weird, but
not impossible.

I pray that you will get the physician that will listen to you and that you will get this problem
resolved. Do not allow them to send you down the rabbit hole, like they did me. Dentists
cannot solve your problem. A University Hospital is your best bet. You are not crazy, either.

This syndrome is very rare. Pursue your healing with a vengeance, I had to because, when
ENTā€™s cannot find what is wrong with you, they send you to a dentist, or to a psychiatrist.

Best of luck to you,
Hadassa

13

There are 5 doctors on the ES Doctor List (under the HOME tab above) in Florida. Are any of them close enough to you for you to pay them a visit? It would be worthwhile to make an appointment & take a road trip if youā€™re up to it to see one of them.

As Hadassa & others have said: DO NOT GIVE UP! Itā€™s so worth it to have the nasty pokey styloids/calcified ligaments removed if possible!

14

Here are a couple of pics of my CT w/ contrast. I used 3D Slicer according to the tutorial written by Snappleofdiscord (thanks for that!).

PAINT_Softtissue_CTCoronaryArteries2_.jpg650Ɨ662 121 KB

This first one shows my right (red circles) and left (green circles) SPs. Using the ruler in 3D Slicer, I measured the right to be 4.5 cm (circle to circle) and the left to be 3.1 cm (4.4 cm if going out to the second green dot).

Oddly, my ENT measured my right and left to be 3.5 and 3.4, respectively. Did I measure too far towards the base or did the ENT just forget a centimeter?

PAINT_SoftTIssue_CTCoronaryArteries2_1.jpg464Ɨ770 97.9 KB

This picture shows my right SP laying up against a vessel (not sure which one). By rotating the image, I can see that the vessel is touching the SP rather than in front of it.

Could this be why I have a swimmy/heavy-headed feeling in my brain that started a month or so before my ear pain? I would think that vessels on both sides would need to be impeded for anything like that, and the left SP doesnā€™t contact any vessels.

15

@Hadassa Thank you for your story. Iā€™ve been lucky so far in that both my ENT and dentist already knew about ES. My ENT wants to do the surgery even though heā€™s never done one before. Iā€™m not sure if I feel good about that. He would also only be doing the intra-oral approach.

@Isaiah_40_31 Iā€™m in the Midwest and looking for other surgeons now. I know there are some at Northwestern in Chicago, but I think they also do intra-oral only.

16

The measurements I donā€™t think seem to be always accurate- weā€™ve had quite a few members whoā€™ve had surgery and whatā€™s been removed has been longer than measured on the scans. I did find one piece of research which stated that different mediums gave different results. Also some doctors measure just the styloid process, some measure the SP plus any calcified ligament as well.
Swimmy head etc. could be vascular symptoms, I think that having one side compress an artery could cause symptoms, but weā€™re not doctors hereā€¦

17

Your styloid does look thick / wide at the top based on other CT pictures Iā€™ve researched [but Iā€™m not a doctor].

I had an ultra-sound doppler to test rate of blood-flow through my carotid with my head in neutral verses flexed none invasive or radioactive test that showed a 58% decrease in my flow. I donā€™t know if this may be helpful to you to identify source of your ā€œswimmy headā€.

18

UGHā€¦Please, please, pleaseā€¦do not go through someone who has never done
this type of surgery. This was one of the hardest surgeries I have ever
had in my life.
There is allot of pain associated with it. My physician was actually a
PHD. who was a professor at Univ. of OK. I was diagnosed by Dr. Greg
Krempl, but he did not
do the surgery because he had never done one. He referred me to Dr Layton
Runkle M.D. who had done about 7 previous to mine. He has already retired.

Dr. Krempl is still on staff at OU Medical. I am an insulin dependent
diabetic and we heal very slowlyā€¦I sat up in a recliner every night for
about 4 months because I
could not swallow properly, or eat. The first sip, and I do say
sipā€¦burned going down and that was Daisani. My husband worked with
Frito-Lay(Pepsico) and they sell
Aqua Fina. My husband brought me one to see if I could drink that,
whewā€¦it went down smoothly. Not sure what the difference was except,
maybe Daisani might put
a little sodium in it???

It was a long process and I lost 40 lbs. and Iā€¦was on FMLA at work. For
me, I was blessed that my husband kept working and making sure that I could
recover.

If you need any help, or information to help you, email me. Best of luck
and keep us all informed as to how you are getting on with this ā€œdevilā€ we
have to deal with.

Hadassa

19

Iā€™ve sent e-mails out to Dr. Bove and Dr. Cognetti, as well as a few local doctors here at the University. No luck with the local doctors, but Iā€™ll let you all know what comes of the other e-mails.

Does anyone know if there are any surgeons with styloid removal experience at the Mayo Clinic?

20

Mayo Clinic does not have anyone w/ good ES experience. They seem to be somewhat dismissive about Eagle Syndrome even for people who have been previously diagnosed & go there for a second opinion. They are good for many other types of health problems including those which potentially occur alongside ES.

21

Im trying to convert my scan with this but it keeps crashing my computer. Is there another way?