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Eagle Syndrome - Online Support Group

New to knowing I have ES, but symptoms for years (sorry a bit long)

So hi everyone, so glad I found this place. I was just diagnosed with ES a couple of weeks ago, though I’m pretty sure I’ve had it for quite awhile symptom wise.

I’m 46, female, and I’ve been thru the ringer it seems with a lot of weird health issues. I was diagnosed with Graves’ disease (hyperthyroidism) about 20 years ago, had RAI to kill off the thyroid and was one of the people who gained weight instead of losing which is 20% of the cases. Found my body has a predilection for making things that it shouldn’t. Several pre-cancerous polyps, that luckily they first found when I was 30, ganglion cysts, and a tumor (benign) on my Parotid gland of the left ear area just a few years ago, which is also apparently fairly rare. Jan of 2015 I got a headache that never went away again to this day. I’ve been on a search to find out why and fix if possible. It’s usually a pain right above both ears, worse on the left side for me, but both sides definitely. Found I had Deg Disc Disease a few years ago, had cervical surgery, which Drs said was worst case they’d seen in someone my age, that helped a little. Tried various medications, nothing helped. Tried acupuncture, chiropractic, all sorts of meditation, and the like, nothing helped much. I developed sleep apnea a few years before I started the headache and that may be the thing that solves this. I had a thought maybe trying to keep my mouth shut while using a CPAP might be causing TMJ issues from tension thus causing the headache. So searched out a Dentist that was proficient in TMJ and sleep studies, and apparently that type of dentist exists! He did a 360 radiograph of my head, and a few minutes later showed me that I have Eagle Syndrome, wow, those are super long on both sides, he said it’s one of the longest he’s seen in his practice, and he’s seen several in the last two decades. I also have problems with jaw being slightly misaligned so that’s an issue causing pain as well. I’m in Louisville, KY and he’s sending me to an ENT named Dr. Bryan Murphy here tomorrow. This is where he sends all of the patients he’s had with ES because Dr. Murphy is supposed to be one of the best (and few) who knows about ES and how to treat it. So tomorrow I go talk to this doctor and we’ll see what he can do. I’m hoping he can give me some good information, and I’m going to use some of the things I’ve read here to help me make an informed opinion about anything he recommends.

WOW, redfaery! Good for you for never giving up! Your body has been through a lot. I’m glad you’re seeing an ENT who actually knows about & has treated ES before. We will be interested to read your post visit report, & of course, are here to answer any questions you may have after the appointment.

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That’s good that both your dentist & the ENT have experience of ES!
It’s a good idea to ask if the ENT does external or intraoral surgery- with external surgery the surgeon can see more of the styloid & usually remove more. Intraoral is more likely to develop infection, & the recovery can be hard, as tonsils are often removed too, plus sometimes not as much can be removed. Also check how much will be removed- just shortening a bit may not solve your symptoms, as much as possible needs to be removed, & the end smoothed off. Also check if you have calcified ligaments as well as elongated styloids, & if so that they will be removed too.
Hope this isn’t too late, & hope your appt goes well!

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Not too late, I’m going in a few minutes, just saw this. Also I had my tonsils out when I was a kid, the dentist seemed to think that would make the recovery a lot easier if they do intraoral, less to recover from. Thank you!

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Well appointment with this ENT was a bit of a disappointment. Turns out he has dealt with Eagle Syndrome but it was roughly 20 years ago, so he is no longer confident in doing surgery or treating it. He is however going to look at my scans carefully, and if he thinks surgery is necessary, he will send me to a “guy he knows at U of L”, which I have a feeling is the one on the doctor list you all have for Kentucky because that’s where that doctor is.

He did agree that my constant headaches could very well by Eagle Syndrome, or my jaw/TMJ issues, or both combined, or there could be a nerve that is being irritated or compressed causing it in that same area.

So back to waiting again.

I have a question. I had both of my tonsils out when I was a kid. If I find a surgeon and he does intraoral surgery, will that decrease the recovery pain/etc do you think?

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It may well do, occasionally surgeons have managed to do intraoral without taking out tonsils, & that does seem to have been an easier recovery.
If it’s Dr Bumpous I think he’s done surgery for a few members.
A shame you’ve had a wasted trip, but at least the doctor took time to look at your scans & was honest enough to admit he wasn’t confident to do the surgery. And I hope that you don’t have to wait too long!

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redfaery,

Beware the statement - “If I think surgery will help, I’ll refer you…” There is no other cure for ES besides surgery. If the doc you saw today feels surgery won’t help then you’ll need to get your referral from your PCP or some other doctor. Any doctor knowledgeable about ES will not say, surgery won’t help, unless that doctor is only acquainted w/ people who’ve had inadequate styloid/stylohyoid ligament removal & thus remained symptomatic after surgery. The caveat to that is that there are nerves that can get irritated from surgery & nerves that are irritated by ES can take up to a year to heal after ES surgery.

If you have bilateral ES & only have 1 styloid removed, the remaining styloid can create symptoms even on the removed side. This has led people to believe surgery didn’t help when, in actuality, getting the second styloid removed will strike the final blow to ES symptoms, & they can begin to resolve permanently or nearly so.

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I definitely want to get both of them removed, they are both super long and both from the scans I saw are impinging on the carotid and who knows what else, which honestly scares me, as to what all is being damaged right now. If this doc won’t refer me, I’ll go back to the dentist who caught it and have him refer me to the ENT who I know will help.

I’m an information junkie by which I mean I like to do a ton of research on anything health related. Everything I’ve read on here, and elsewhere suggests I need to get those taken out, whether or not it helps my headache symptom I know it’s got to be affecting me elsewise and they need to go.

I had my parotid gland removed a few years ago and I still have numb parts of my ear where they had to cut, they did the incision like they do for face lifts I was told, I think I’m at 6 years later and I have 60% of the feeling back where the surgery was, but it was still totally worth it.

Thank you all for the encouraging words!

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Well said Isaiah!
Im a big supporter of Dr. Samji one west coast in San Jose, CA who has done over 450 of these procedures and very comfortable doing them. Ask any potential surgeon how many of these procedures they have done.
For $300 (if you send him your CT Scan on disk), he will review them and do phone consult. Your insurance may cover it.
I traveled down from Seattle to bay area to see him in person for my consult because fares were super cheap. I ended up traveling back for my surgery (on 4/27/20) and spent about 7-10 days there pre-and post op and had a great experience. Ill be going back again soon for the other side. Having a phone consult alone is worth $300 out of pocket if you cant get in to see someone out your way for a few months. I send mine in and was reviewed within 2 weeks.

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I went back to the dentist who diagnosed me today, I also have a jaw that is misaligned, and he said there is a little bone on bone scraping especially on the side that is worse. So on his end he’s got me fitted with a dental appliance to wear to help correct the jaw alignment, plus I come in now for weekly cold laser treatments and some injections to help heal that area as well. And they want me to go on an Anti-inflammation diet, which he thinks may help with all my other health issues as well. I told him about Dr. Murphy not being willing or comfortable to help with Eagle Syndrome and told him about Dr. Bumpous in Louisville here, so they are sending a referral over to Dr. Bumpous today to see if they can get me into him soon and get this show on the road!

Lots going on then for you! I’ve not tried an anti-inflammation diet, but I have cut right back on carbs, & that’s certainly helped with joint pains, I think others have tried the diet on here too. I don’t know too much about dental appliances myself, but I know that quite a few members who’ve had bite guards pre-surgery have found that it doesn’t fit after surgery, so that maybe something to be prepared for.
Hope all these steps help, & that you don’t have to wait too long for your appt.

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Finally got ahold of Dr Bumpous staff. Earliest I can get in is August 5th. I had originally scheduled a vacation for mid September this year but between Covid in the States out of control and ES, I am thinking probably next year. Glad I finally have appointment though with right person.

On the plus side starting wearing the dental appliances and started new diet last week for jaw portion of problems and they both are showing positive signs of helping. Obviously don’t help the ES symptoms of feeling something stuck in my throat and the headache is same, but jaw actually popped back in place a few mornings ago waking me up and tension is slightly less.

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That’s all great news, redfaery! So glad you have an appt w/ someone who can help you & that the dental appliances & diet are already making a difference in how you’re feeling.

Please let us know how your appt goes. I hope you’re able to take your vacation. Getting away for some R & R can make a difference in how much ES symptoms affect you as well. Nothing like a little fun & some good endorphins to help quell the ES “fire” even for a little while.

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It probably seems like a long wait but I’m sure it’ll come round quickly- in the UK 3 months for appts is usual, even longer waits for surgery, but then at least our health care is free!

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It’s usually 3 months here also and our healthcare isn’t free. I was surprised when I got in to see the last ENT within 6 weeks and this one is really close to 6 weeks as well, I think the COVID 19 situation and our health care providers here being a lot more careful than frankly the rest of the entire country has caused a lot of them to not be as busy.

Just trying to be patient.

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Seeing Dr. Bumpous this morning!!!

Saw Dr. Bumpous at University of Louisville today. He had an assistant doctor and a medical student in with him, He did a thorough exam on me. Asked a ton of questions. He said he looked at the scan the dentist sent over but he didn’t seem to think the styloid was that long (I am not a doctor but that thing looked very long to me and my dentist). So he wants to do a hearing test and an MRI. He is concerned maybe there is problems with the nerves in this area. So, we’ll see.

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redfaery,
I would get a copy of the CT on disk and the radiology report. Also the consultation report. My hope is that you can get the length of the styloids in those reports. Generally anything over 2.5cm can be a problem.
My sympathies on the jaw issues. Im in the same boat. Ive been trying acupuncture 2 x week with a TENS unit attached to them. Im seeing some progress with the jaw/ear pain.

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Was the scan your dentist sent over a CT Scan or was it the Cone Beam Tomography? If so, it doesnt really get a good view of the styloids. Mine just showed some segmented calcifications which upon surgery and CT scan was continuous and longer that what showed on the scan.