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Eagle Syndrome - Online Support Group

A couple of questions

#1

Hi, I’m very new to the site. I have had a long haul, although not as long as some of you, with my diagnosis. I’ve always been a teeth grinder and I always catch myself clenching my teeth. Several of the symptoms I have, I have had for quite some time. However, what got my attention was a non ending headache that started the first of December. I thought it was sinus related so I went to an Urgent Care. The Dr. didn’t believe it was sinus related because of the location of the headache. (across forehead and top of head) so, I was sent for a MRI. The results showed some white spots which is characteristic of ageing. (I’m a 53 year old female) I was then sent to my dr. who then sent me to a neurologist. The neurologist sent me for an MRA. (MRI of the blood vessels) The results showed no problems with the blood flow. At this time I’m being treated with medication as if I had a Migraine. Next, I’m sent for a spinal tap because the neurologist thought I might have a viral infection in the spinal fluid. The spinal tap came back normal. Neurologist #1 sent me to another neurologist who specialized in headaches. He gave me a medication to prevent the headache but nothing to address the headache that never went away. He explained that I would be on this medication for a minimum of 6 months and that it might take 2 months before I’d see results. Really? This headache was not affected by light or sound. I had it went I woke up and when I went to sleep. By this time, it was nearing the end of February. A friend suggested a chiropractor. I was willing to try anything…The chiropractor really listened to my symptoms and asked if I had been told that I might have TMD. He told me the symptoms and I said yes to all, clicking when I open mouth, grinding teeth, jaw locking etc…he suggested visiting my dentist. I already had a scheduled cleaning the following week. My dentist set up a special appointment to diagnose TMJ and a special scan, a CBCT. The results of the scan came back stating that I had flattening of the jaw where it went into the TMJ joint (hope I’m explaining it right) on both sides and also it stated that I had bilateral elongation of the hyloid- styloid process, Eagle Syndrome.

One question that I have … does anyone on here have both TMJ and ES?
Like I said before, several of my symptoms I have ignored for some time.
The symptoms I have include… sore jaw, sore neck, fullness of the ears, hard to swallow, a hoarse voice at times, shooting pain when I turn my neck, a non ending headache, numbness on my face so severe at times that I can not even touch my face. The symptoms for TMJ and ES overlap. I’m not sure what syndrome is causing what…

I visit an otolaryngologist at Duke Hospital next Wednesday. I really need some advice as to what questions I should ask when I visit. What should I look for in a doctor so I will know I have someone knowledgeable enough to deal with this rare diagnosis? Any advice is much appreciated!

Fast Decline
#2

Oh are you in the right place. I am not as experienced as many of the people who will reply to this - but I can tell you I treated my ES symptoms as TMJ for over 3 years. Still not sure if all ES or any TMJ involved. I can tell you I had severe left side pain, much like you described and when the left side styloid process and ligament were removed my jaw pain switched to the right. I am glad you have an ENT appt. Do you know if this Dr. has any ES experience? If you are unsure, I would call and ask his nurse. Many of us have found that if there is no experience, it just turns into another Dr. appt that leaves you with no more answers than you had before you went! Is this a head and neck surgeon? Have you looked to see if he is on the list of known Dr.'s with experience? Good Luck:)

#3

I did call his office on Monday asking if he truly had experience with ES. I was told by his nurse that he has dealt with ES. I’m hoping he does. I’m traveling 3hrs to see him. I really can’t afford another wasted trip!

#4

Great that his staff knew what it was! That is a positive start. I will let someone else answer your question of what questions to ask. I can tell you that I had to travel out of state to get care and the biggest suggestion I have is to take as much documentation and photos you can - arming yourself with knowledge. We had my iPad with the images sliced and ready to be shown quick! Good Luck:)

#5

Your symptoms do sound like ES…I’m not an expert on TMJD, but quite a few members have both.
I’d ask the doctor how many surgeries he’s done, & the outcomes- if he says not many have had good results I’d get another opinion. Does he do external or intra-oral- external is better as they can remove more of the styloid. Are your ligaments calcified- if so, will he remove all that as well? How much of the styloid will he remove- to skull base is best, but if he does leave some, will he smooth the end off? (Otolaryngologists are usually skull base surgeons to I think, so that’s good) Ask about swelling- some doctors give steroids, some use a drain, but not all do either, it’s not essential & you can ice the neck yourself to help. Does he monitor nerves during the op- that shows if they’re putting stress on nerves so they know when to stop.
I can’t think of anything else! Let us know how you get on…

#6

Jules,
Thanks so much for the info. I’m really not sure how many surgeries this dr has done. I do have calcification of the ligaments. I will ask about the type of surgery that he has/ will perform. I’m wondering if surgery can be performed on both sides at the same time or if it’s best to do one side at a time?

#7

Duck8384 -

Surgery can be done bilaterally all at once but the most experienced ES surgeons we know of will NOT do bilateral surgery in one fell swoop. They require at least 3 months healing time between surgeries. ES surgery causes pretty severe swelling in the throat for a week or more post op thus the reason for only doing one at a time.

#8

Thanks so much for the info. Does this include both external and oral surgery?

#9

Yes, not many doctors will do either technique bilaterally at the same time

#10

Jules,
That’s disappointing. I really thought I could get both sides done at once. I feel like I’ve lost several months due to all the pain and endless doctors and tests. I can’t believe I will have to deal with this that much longer. Totally bummed… :sob:

#11

I know, it would be good to get it all over and done with in one go, but the swelling if both sides were done at once could be dangerous, although a couple of members have had it done & survived to tell the tale!

#12

I just had my right side done, externally, on April 19th. Do not do both at the same time. Too much swelling. My doctor used a drain which I think was very helpful. When I asked the first doctor I saw that diagnosed me how familiar he was with Eagles and how many operations he’s done he said oh maybe one a year because it’s so rare! No not a good answer. I then went to Brigham & Women’s Hospital in Boston and Dr. Annino did mine. Excellent doctor. Very experienced. My left side will be done on August. Good luck to you.

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#13

DeniseD,
Thanks for the advice.

#14

DeniseD I am so glad to hear you have finally received your first surgery successfully with Dr Annino. I am in Boston as well and seeing a surgeon at Beth Israel in Boston in a few weeks. Good to know that Brigham’s has an experienced dr that I can reach out to if needed. All the best with your recovery and 2nd surgery in Aug! Please let me know how everything goes! Excited for you to finally feel better and get some comfort!

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#15

Hope you keep on healing well! :bouquet:

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#16

Thank you…so far things are healing well. No more ear pain on the operated side, right side. no more choking, no more something stuck in my throat feeling. I have noticed I’m continuing to get headaches on my left and my gravelly voice and cough are there but certainly not so often. I really think when I’m able to have the left side done I’ll be much much better. Wish you luck with your appointment. May I ask who you’re seeing at Beth Israel???

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#17

Thanks Denise - I am seeing Dr. Jalisi at Beth Israel. I am not sure of his personal experience with ES surgery but he has published several articles on the Eagle’s surgery. I’m hoping he has experience with these symptoms and can help or at least refer me to a surgeon with experience.

Really hope you continue to heal up well and get through your other surgery well and get some comfort. I have a lot more pain and problems on my left side but think I’ll need both sides as well.

Thanks - I will let everyone know what I find out in a few weeks and if Dr Jalisi is another ES doctor we can add to the list.

EiB

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#18

Dear Duck 8384, you have been in what I call, pain in throat merry-go-round! When a physician cannot figure out what you have, they guess at it and they want to send you to a dentist, neurologist, cardiologist, what ever to kick the can down the road. If you have a poking sensation in the back of your throat or, pain in swallowing, a feeling that something is under your tongue…You more than likely have ES. Nothing will get rid of it through meds, chiropractor, and whomever they send you to.

You will have to have the elongated styloid removed. End of story. I suffered for 17 years and I got tossed from one doctor to another. None of them resolved what I was feeling. It sounds like you already have an ES diagnosis. I too was told I had TMJ…not!!! I finally was diagnosed at OU Otorhinolaryngology in Oklahoma. My doctor who diagnosed me was Greg Krempl MD. OU is a research University Hospital so, there is money in that system. Allot of alumni who have deep pockets…I had the surgery 1 week after I got diagnosed…Seventeen years with no diagnosis.

I had my surgery in 2004, I think? I had both styloids removed at the same time through my mouth. Surgery from hell! But, I survived and I no longer suffer with pain 24/7. I hope you pursue your healing like I did. Life is good now.

#19

Duck 8384, I meant to say, have the styloid’s removed.

#20

I had both sides done at the same time. Spent a week in the hospital.