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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.

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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.

Hello, my first post.

I’m in BC Canada and what I’m learning about surgeons in Canada is not promising.

I’ve been using cannabis for pain for other conditions and with this pain I was really consuming the meds, but smoking seems to aggravate it.

I have gel tabs for sleep and have used a lot of Advil and Tylenol.

I’ve got emails out to all my holistic healers to see if anyone can help. Surgery has so many possible complications and recovery time.

I went to my dentist on Thursday and he did a pano x-ray and told me I have Eagle Syndrome. My symptoms didn’t match what he said but I came home and googled.

Yes, so many of the same types of symptoms.

I just want to say thanks for being on here, it is very lonely to have a rare condition.

YHi Sid_Byker-

Welcome! Unfortunately, ES symptoms are caused by a mechanical problem i.e. calcification of ligament(s) &/or elongation of the styloid process(es) which irritates cranial nerves that run through the same area of the neck. The calcification/elongation can also cause compression of the internal carotid artery(ies) &/or jugular vein(s). The irritated nerves cause pain, gastrointestinal issues, & heart/blood pressure symptoms among other problems. The vascular compression can cause vertigo, intracranial hypertension, migraines, blackouts, etc. Thus, ES cannot be cured without surgery. Some people have been able to control symptoms with Rx nerve pain meds which also tend to have side effects & don’t help for the long term.

The majority of people on this forum who have had surgery have had good outcomes. Yes, surgery has risks & recovery can take awhile but getting good quality of life back makes the risks & recovery time all worthwhile.

There are several surgeons on our doctors list who have a great amount of surgical experience, but they’re mostly in the US & Great Britain. There are a couple of Canadian members eastern Canada who have surgery planned with a doctor in that area. We haven’t heard yet about their surgical experiences.

Your best bet is to look for an ENT cancer specialist who has skull-based surgical experience or a Maxillofacial surgeon also w/ skull-based experience.

I hope this info is helpful. Hopefully someone from your country will reply as well.

Thanks so much for the reply Isaiah_40_31

All great information that you provided and I appreciate it.

I’ve been having the symptoms for at least a year, but they are rapidly getting more problematic and more painful it seems.

It is a bit of a relief to have a diagnosis (or a tentative one in my case, but I can see myself on the x-ray) as I know people who ran around to doctors for years before they even knew what what wrong with them for various conditions.

I do have an appt. with my nurse practitioner for next week, it would be sooner but I have to go out of town (vacation and work), so also happy to get of town for some fun in the big city.

I have some really great extended health benefits and completely utilize them for my optimal health. I was hoping to see them for ES, but am realizing that they are going to have to be supports while I pursue the surgery and to help me quickly recover from the surgery later.

I’ve been very lucky I see, that my symptoms are primarily face pain that travels around. I do have a some shocking throat pain at times when I am eating, but never have trouble with my veggie omelets in the morning.

I do have an amazing dentist, who is very thorough and caring. Oh, I’m going in tomorrow for a mouth guard to keep from beating up the inside of my mouth at night. I’ll see who he might know for surgery.

I appreciate your directness. I am kind of in denial, surgery is terrifying, side effects too. Also, being a single person without good supports or extra money for travel - it is kind of overwhelming.

Are you positive this isn’t a mind over matter sort of thing, that something that I grew couldn’t be encouraged to just leave?

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Hi there BFresh,

I would love to know the name of the Dr. in Edmonton. I am less than 700 km from there.

I am searching around for doctors because in Canada because I don’t travel to the US any more, but if I must…

I found this doctor in Toronto area

https://ca.linkedin.com/in/jaime-s-guerrero-dds-mhsc-57671966

This is on his page

I feel like I need a medical dictionary by my side.

Thank you

Hi Sid_Byker,

There are two surgical approaches for ES - intra-oral i.e. through the throat & external i.e. through the neck. When intra-oral surgery is done, if the tonsils are present, they are often removed because they’re in the way. The article you excerpted is discussing intra-oral AKA transoral surgery but w/o tonsil removal. The author is specifically addressing a situation where the styloid process (apophysis) is impinging on the carotid artery & thus needs to be removed to prevent damage to said artery. Vascular impingement is a somewhat common problem in ES.

There is a sense that external surgery is safer & possibly provides longer term recovery from ES because it allows for
monitoring of the nerves & vascular tissues during surgery & provides greater access to the styloids & stylohyoid ligaments so they can be completely removed rather than just shortened. That said, there has recently been progress made on the intra-oral surgery technique whereby multiple incisions made in the throat (as opposed to just one) allow for more complete access of styloid & ligament. Unfortunately, there is no good way to monitor nerves & vascular tissues during intra-oral surgery as far as I know. Caveat: I am not a doctor.

I hope this helps.

Hi & welcome!
Unfortunately surgery is the only cure for ES- some members have had help with lidocaine/ steroid injections into the area, but this is temporary, & can only be repeated a few times if it does help. Also it has to be done by a knowledgeable doctor & can be done under ultrasound. There is info about ES treatment in the Newbies Guide, sime membes have tried seeing a chiropractor, but this should be done with caution as they could potentially make things worse. So definitely mind over matter won’t help!
I understand that you’re concerned about surgery, as there are risks, & also if you are on your own it’s not nice for recovery, it is a personal decision as to whether you can live with symptoms or not. And bear in mind if they’re causing symptoms then they could be causing more damage in the meantime.
I think there seems to be an unwillingness to do surgery in Canada, & the few doctors who do have really long waiting lists, so it might be an idea to perhaps ask to be referred to someone anyway & get on the list in case you change your mind? And having a look for doctors who’ve written research papers is a good idea to see if you can be referred to them.

Thank you for all the information.

I’ve certainly learned a lot in a few hours on here and on the fb page.

As you know, the symptoms are very unpleasant. It feels like I have an alien living in my face and I have extreme discomfort in areas where I have never had sensations.

My tongue is frequently parked crooked and my mouth wants to hang open.

I never even mentioned it to my primary care nurse because it is such a hodgle podge of symptoms and I have been using massage, acupuncture, osteopath, physio to deal with the symptoms. There is a spot on my left shoulder that my chiro. can’t budge. Same side as all the other symptoms.

I’ll send him my xray because I am seeing him today.

Today is the first step in getting a soft mouth guard for my upper teeth to try and stop the trauma that occurs inside my mouth, some of the issues are from 40 years ago when I had my 4 impacted wisdom teeth removed.

I need to get an eye patch because sometimes I need to close my left eye, it feels like someone hit me across the face from top to bottom across my eye and cheek close to my nose, but also around my ear.

I really appreciate the info and support on this page. I woke up this morning ready for the fight, and I’m looking at it like an adventure. I let my passport lapse because of politics south of the border but I’ve always wanted to spend time in California and I don’t have to worry about sick days or even LTD if necessary.

I’ve even gained a bunch of weight lately so I don’t have to worry about running out of body fuel.

I’m well positioned to tackle this. I’m seeing my nurse next week to get a referral to CT scan and ultrasound of neck. We have a CT scan in my city.

Part of what freaked me out was reading this story when I was looking for a surgeon in BC. I’m pretty good at taking on the system and having some wins, I think I can make a case for the BC gov. to pay for my surgery, I’m pretty tenacious.

https://www.langleyadvancetimes.com/community/eagles-syndrome-sufferer-seeks-publics-help-in-easing-pain/

I keep reading that we should delay surgery as long as possible? That does not make sense to me. If that is the answer then I want surgery asap.

It is a relief to know what has been affecting my health and causing so much pain and discomfort. This sort of thing certainly affects the mental health as well.

The mind over matter was sort of a joke, but was my original plan sort of. I’ve done some work with a Qigong Medical Master and she was so concerned that I’m missing my gall bladder. I would not have that surgery today if I could possibly avoid it, but I think this is different. Surgery is not over prescribed for this condition.

Canada’s health care system is not fantastic, the government only recently recognized Lyme disease and still people are selling their homes to pay for treatment in the US. I have a friend in Toronto who has spent a small fortune on his own treatments.

I’m just scared is all. I feel like crying a lot and I have been.

I’m going to watch the Netflix Heal again tonight because there are some great ideas in there for moving forward.

From my googling it seems the alternative to surgery is pain meds and anti-depressants. I so disagree with that method. I can’t even take any more prescription NSAIDs or I break into a rash of tiny blisters on my core, which my doctor insisted was secondary syphilis and sent me to community health for a test (mandatory). Trauma upon trauma dealing with conventional medicine.

There are services available in my community for assistance at home, grocery delivery, I get my cannabis meds by mail…

It is truly amazing how much information is available about ES considering it is rare.

My symptoms have gotten worse very rapidly. They probably started about 26 months ago when I would find myself grimacing without my awareness.

I sleep propped up because sometimes I feel panicky because I can’t swallow and need to get upright immediately.

At that point it takes 3 or 4 tries before I can swallow and I need to be leaning forward so I don’t choke.

The reflex just won’t work.

My friend told me to start a pain diary and I will begin recording things today.

I have my first appointment with a new psychologist next week. My presenting problem is some trauma that took place about a year ago and the resulting trauma from some not very good counselors and lack of resources.

Again, thank you so much for sharing your story and your resources. Your support is so appreciated.

There are far worse diagnosis that someone will get getting today.

A woman is like a tea bag - you can’t tell how strong she is until you put her in hot water.

  • Eleanor Roosevelt

Warm regards,

Sid

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Hi Sid,

You can make a phone consult appt w/ Dr. Samji in California. He is one of the very most experienced ES surgeons in the country. There is a charge for this & you will need to send a copy of your CT scan & the written report prior to the appt. The fastest route is to his medical assistant Lauren to set up an appointment - lauren@caminoent.com.

As far as ES goes, I’m in your camp, sooner surgery is better especially when one is very symptomatic (as you are). Symptoms will only get worse w/ time. Getting the offending bone(s) &/or calcified ligaments removed sooner than later will go far toward you getting your life back ASAP.

Love the quote by Eleanor Roosevelt! Glad that you feel up for the fight…feel free to vent on here about symptoms, as we do understand.
And understand that you’re reluctant to take any more medicines; NSAIDs don’t tend to work too well for ES anyway. Anti-depressants can help with nerve pain, they’re prescribed at a lower dose than as an anti-depressant, so might be worth a try. I take Amitriptyline, it works quite well for me although my pain wasn’t as bad as others’ I know. It does help me sleep though, which was a great bonus before surgery! And one member found using lidocaine patches on her neck helped a lot, I don’t know if that would be a possibility for you with your reactions to drugs?
Keep strong, thinking of you.

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