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Eagle Syndrome - Online Support Group

New user, from Alberta, Canada

Hi all,

I’ve had right sided throat pain for about 18 months, I kept telling my dr it felt like something was poking me from the inside, like a piece of glass was stuck back there or something. I was referred to an ENT who scoped me and said reflux, prescribed meds to treat. They didn’t help at all, after a few months my Dr referred me to another ENT who scoped me and also said reflux. I let him know I’d already been on reflux meds for months with no relief. He decided to send me for a CT scan, mentioning something about bony projections that may be causing my grief… to be honest I thought he was crazy!

But I went for the ct scan and sure enough it came back saying I have bilateral elongated styloid processes, left is 3.8cm, right is 3.7cm, possible diagnosis listed as “Eagle Syndrome?” My ENT referred me a neurologist, he feels medication and injections are the way to go. He said surgery is 50/50 (which I now believe to be a false statement due to his ignorance on the subject and a reluctance to do surgery himself).

I had some success with gabapentin but had to keep increasing my dosage. I had better success with pregabalin but again kept increasing my dosage as I built tolerance. He refuses to prescribe Tegretol or any other older medications due to the side effect profile. Neuro appt is booked for July (only a 7 month wait, haha, free healthcare in Canada but wait times are ridiculous). I’m feeling lost and in limbo. I feel like nobody in my area (city of a million people) is knowledgeable about this condition and I’m just being bounced from dr to dr with no real plan.

I’ve been trolling this site for awhile and decided to sign up for support. I’ve requested an appointment with Dr. Samji as he seems to be the “go to” guy for people like us. I just want relief, the burning nerve pain radiating from my throat and up to my ear is relentless and exhausting.

Thanks.

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BFresh,

Welcome & we’re glad you found us! The definition of Eagle Syndrome is elongated styloid processes* OR calcified stylohyoid ligament OR a combination of the two. It can be bilateral or unilateral.
*Styloid processes that are exceptionally thick, pointed, curved or twisted but not exceptionally elongated can also cause ES symptoms.

Many people on this forum have been diagnosed w/ acid reflux issues before learning they had ES. Some members have had temporary pain relief w/ nerve medications like gabapentin or from ultrasound guided injections that are a combo of lidocaine & cortisone. As you have probably learned from your trolling on this site, surgery is the only real cure for ES. Doctors who aren’t “in the know” will tell you surgery has a very low success rate. Doctors like Dr. Samji, Dr. Cognetti, Dr. Milligan…will tell you the surgical success rate in eradicating or minimizing symptoms is closer to 90%. There are always risks w/ surgery & ES surgery is considered major surgery so there is that to consider. It does take a couple of months post op to get your energy & full function back & can take up to a year for nerves to mend. That said, I WOULD NEVER trade any of the minor residual surgical issues I have for living w/ ES symptoms.

I’m sure others will pitch in & give you their opinions. We look forward to sharing your journey w/ you & to helping hold you up when the going gets tough.

There have been a few members who’ve had good results from the injections, & have been able to put off surgery for a long time, but others have had no pain relief at all…I’d say maybe try it while you wait & think about surgery, but it’s likely that you’ll hear from Dr Samji before you get your appt. to have it done! (UK waiting times are similar!)
There’s a research paper, I think it’s mentioned in the Newbies Guide, which gives high success rates for surgery as Isaiah mentions, & it suggests not removing enough etc. is the reason for failure, rather than removing styloids not helping symptoms.
I hope you hear from Dr Samji soon…

BFresh, Don’t give up. Living with this ES is hard. Keep on pursuing your healing. Do not allow doctors to keep you on a Merry go round! Use the list for this site for doctors who work with ES patients. I find that just regular ENT doctors sometimes give you the runaround. Don’t let them talk down to you or, dismiss you. You are the best advocate of your own body…I also don’t let them talk down to me. Doctors can get “fired”, and I have fired them.

Hopefully you will find the right physician for yourself.

BFresh

Welcome to this community. You’re lucky to have landed with some of the most knowledgeable and empathetic people on the planet! The quality of the information and support here is great, and I’m glad that you’re no longer lurking.

That’s the good news. The bad news is that there doesn’t seem to be anyone in Canada who does this kind of surgery. It’s so specialized and tricky, but in the hands of someone who has done lots of these procedures (and who can judge who’s a good candidate) I have the impression that the success rate is quite high. There used to be a surgeon in Toronto, but he seems to have retired.

Your options could include an out-of-country procedure, done with the blessing of your provincial ministry of health, and on their dime. I’d be finding out the rules for that asap if I were you. Meanwhile, let’s hope that the neurologist will be able to dispense some relief in some form or other when you finally get there. Yes, the waiting list for problems that aren’t life-threatening in Canada is awful, isn’t it. But it does get done, the expertise is usually good, and the price is affordable. The wait, though … I know, I’ve had a few long, painful waits myself. Have you called the neurologist’s secretary and spoken to him/her about getting on the cancellation list? A call every few weeks (be nice, very very nice!) can work wonders.

Glad you found us, BFresh, and all the best to you!

Seenie from ModSupport (I’m Canadian too, eh?)

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Thanks everyone for the comments and support! My Dr increased my lyrica dosage to 225mg a day (75mg in the morning and 150mg at night) and it’s allowing me to sleep which is awesome. I’m off the codeine and tramadol which made me loopy, just using Advil and Tylenol during the day for pain management. The pain is still there every minute of every day but it’s an annoyance rather than debilitating.

I leveraged some personal connections, talked to a zillion people (including some on this forum), read everything I could and managed to get a referral to an ENT surgeon in Edmonton who has expressed interest and experience with ES. I talked to a former patient of his (treated for throat cancer) who said he was phenomenal all around, best doctor she’s ever had. There’s another forum member here who is scheduled with him for ES surgery too. All in all he could be a great name to add to our list… not yet but maybe after a few more successful conversations, surgeries, etc.

So for now my pain is manageable and I’ve found someone potentially great right near my home. So that’s my plan for now, will keep you posted!

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BFresh,

Nice work being your own advocate, often the best way to keep moving forward is as a “pleasant squeaky wheel” :wink: I am grateful to hear you found someone near to you with experience and good referral. Looking forward to hearing your success story! Be well n

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That’s great news, it would be really good to hear of another doctor! Well done for not giving up & keeping going & finding someone yourself! :+1::clap:

What great news, BFresh! So glad you had some connections & left no stone unturned! Your diligence is paying off. I think the fact that another forum member is scheduled for ES surgery w/ him is fantastic! It’s been a long time since I read of anyone getting ES surgery done by a Canadian surgeon. It will wonderful if we can add him to our ES Doctors’ list down the road.

I’m so glad to read that your pain is manageable at the moment. Hoping it stays that way until you’re able to knock it out at its source!

Great news about the possible doc lead, B! Any news? Is Lyrica still helping?

Seenie from ModSupport

Hi BFresh, I’m in Calgary and am trying to get a referral, so I would really like to know who is the surgeon you identified in Edmonton if you can share that.