New user, from Alberta, Canada

[Sid_Byker]

Thank you for the note.

I saw my dentist today to get fitted for a soft mouthguard to protect the inside of my mouth. He is referring me to an ENT and I’m in luck that there are three in Cranbrook.

I see my nurse next week to get a slip for CTscan and neck ultrasound.

I am very grateful for the information about the clinic in California and will pass that along to the EMT I see if they are interested.

All the words in the articles I read are far beyond my vocabulary and I’m afraid that would be a waste of money for me.

I do have great supports in an osteopath, a pair of naturopathic drs., one does trigger release acupuncture. That is very effective for pain and I have had him treat my face a few times and the shoulder issue when it has become unbearable.

Trigger release acupuncture feels like hitting your funny bone over and over again. The release is amazing. Dr. Chris Ford in Kimberley BC if anyone wants to try it.

I know that they can provide all kinds of supports to recover from surgery. My chiropractor is going to research it and will write letters or reports.

I am a nerd and love to research and I am finding a lot of stuff about ES, but I can’t translate it.

I am super grateful for the caring folks on this site. I’m touched by your reference to my drug intolerance. I have a prescription for medical cannabis and I buy gel tabs that work like magic.

I talk to a nurse practitioner about symptoms and pain, sleep and what kind of relief I need. I will update her on this next time and might need more CBD or up the dose.

Awww, I just read the last line again. I am feeling quite strong right now, things are moving forward and can’t move faster because I am heading on a mini vacation on Thursday.

I need to pace myself too because I don’t want appointment fatigue.

Thanks for thinking of me.

Warm regards,

Sid

[Sid_Byker]

Hi Jules,

Thanks for the encouragement.

I think that some of the loveliest people develop ES… based on this page.

I love eagles and I get so excited when I see one. I went to my spot on the Wildhorse River before sunrise to catch the last of the Harvest Moon on Friday the 13th. I brought a coffee and built a little fire just to enjoy outside and celebrate the season.

I am pretty grateful for the amazing summer we had after two years of forest fire smoke and extreme heat. (I’m so thankful that it was just smoke at that)

I was just standing by my little the fire looking straight out and into my sight, flew a big beautiful eagle and then landed in a tree exactly across from where I was but up quite a lot higher then where i was. I took photos, but only a white shape.

I just strained my eyes for a while and then it flew further down the river so I wandered down there for a better look.

I felt very blessed that the eagle visited me. In my teachings about the First People of Turtle Island, the eagle is a sacred creature and flies the highest to deliver our prayers to creator. In some of the Seven Grandfather teachings the Eagle represents Love, they are loving parents and teachers patiently teaching their offspring, protecting and guiding them.

I am convinced that there is a very good life lesson that comes with Eagle Syndrome. I still have not figured out why it is named that.

I have a rare condition with the coolest name ever.

I’m sure I will need to vent, so thank you. I admit I have been just all of sudden crying. I have a few tears and then within minutes I can be laughing or singing.

Singing is very good for the vagus nerve btw. Do links work on this page. I have so many good resources because I have been on many healing journeys in this lifetime.

I’m feeling some moments of sadness, but also more joy and excitement than I have felt in at least a year. I didn’t even discuss all the strange pains, extreme discomfort feelings in my solar plexus, the sudden stabbing throat pain or difficulty swallowing, the dull aches where I have never had a sensation before, the need to close one eye for comfort more and more often, my tongue signalling left so often and causing so much tension in my face.

The three teeth just above where the line (nerve, bone, cartilage ?) ends feel like they are being twisted in their sockets at times. Not all the time. Whew.

The feeling in my forehead and my upper cheekbone feel to me like when I was a coffee addict and would drink too much and become dehydrated. My sinuses would kind of burn from the dryness. That is the feeling from the nodge on my ear to my forehead. My eye has a whole different experience.

I’m do feel blessed, my symptoms at this point are more what I would describe as extreme discomfort and sensitivities, deeply irritating that leads to emotional reaction kind of things. I have been reading about unable to work and needing strong pain meds kind of pain.

You stay strong too.

[Isaiah_40_31]

Hi Sid - There is no great story behind the name Eagle Syndrome. Dr. Watt W. Eagle first identified it in 1937 & thus it was given his name. https://en.wikipedia.org/wiki/Eagle_syndrome

It sounds from the description of your symptoms that you have trigeminal nerve irritation, glossopharyngeal & hypoglossal irritation, acessory & vagus nerve irritation & perhaps some other unhappy nerves. If you look these up & see the courses they take in the body, you may gain a better understanding of why you have pain in the places you do.

We are always here to help decode medical jargon. Please feel free to ask about particular phrasing in a research article or other research info you come across, & we’ll do our best to help you understand what it says.

Your experience on 9/13 sounds awesome. How wonderful that you saw an eagle & enjoyed a blessed outdoor experience. The Bible verse I use as my screen name also includes an eagle analogy: “…those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Watching an eagle soar in the sky does provide a sense of freedom, doesn’t it.

[Jules]

A bit sad that the name is for a disappointingly boring reason! I like to think of eagles soaring too…most people when I explained the name to them thought I was going to grow a sort of a wing, pretty tedious explaining that over & over again!
Glad that you find singing helpful- unfortunately lots of members have found singing too painful & have vocal changes- we’ve had some professional singers here who’ve had their careers affected.
As Isaiah says, if you read up on the different nerves & the effects of irritation on them then it can help with understanding the symptoms.
Hope you can enjoy the next trip as much!

[Sid_Byker]

Hi Isaiah 40 31,

You are just a wealth of information. Thank you so much for all that.

Your bible verse is lovely and comforting also.

Darn, I was hoping that ES folks would get some gifts from the universe. That was a bit of a letdown, but still a cool name and easy to remember vs. trigeminal nerve irritation, glossopharyngeal & hypoglossal irritation, accessory & vagus nerve irritation. I would love to have better vision, I didn’t go to my car to get my driving glasses because I didn’t want to lose the spot where the eagle was.

I do realize that I have considerably less pain and other symptoms than many sufferers. I’m very grateful that my dentist is very thorough and also young enough that this was at least introduced in dental school I could have spent years searching for a cause.

I really need to find some 3D images that I can understand. My pan x-ray is very hard for me to interpret. I can clearly see the line that the arrow points to but I can’t make sense of it. I was joking with my dentist yesterday that I was looking at it in the morning and could not figure out what these things beside me mouth were… it’s my spinal column.

I took industrial first aid half a lifetime ago and my fitness certification not long after and I had to learn a massive amount of information that was completely foreign to me and I thought I knew more than the average bear.

Trying to read info I found using your words to google actually confuse me more - it is like reading another language for half of it.

I’m counting on the ENT to have a plastic head in his office with the nerves and blood vessels so they can show me what is going on. I love doing research and learning and I worked in a college library for many years and learned about so many things that have no application to my life and now I can’t comprehend what is going on inside my head.

I’m praying for patience and understanding,

I sadly remember reading about a medical case in Canada regarding a woman with intractable pain that was basically smoking cannabis all day long. Her boyfriend and mother were buying it for her because of the cost.

I had that kind of in my mind when I was googling some of my symptoms together to try to find something that made sense.

I am also very grateful that I am not so desperate that I will try any cure. I had a botox consultation here in Cranbrook after I read online that it can help with TMJ/TMD. The dentist looked me right in the eye and lied to my face and said, “There are no side effects.”

$1,140 would give me one round of botox starting high up on the sides of my head and down to the bottom. HIs lie chilled me to the bone and I could not get out of there fast enough to come home and google side effects. Yikes!!

I had a consult in January with an orthodontist and he was very honest. I would first need to go to Calgary for surgery to split the roof of my mouth and even that after all I would have to go through it may not help at all and could easily be even worse. He then said I could see a mouth pain specialist in Calgary, which is still an option or perhaps first a consult after I have all my results from CTScan and ultrasound to send before I need to travel.

I’m just watching the sun come up and it has pink streaks again, which I just love. I realize I can see the street that our hospital is on and that I can walk there to emergency if I ever need some pain meds in a 911 way and they can’t refuse on the grounds that I’m driving. I’ll ask my nurse what she can do to facilitate that in case of emergency because pain meds are not what one wants to be seeking when they show up in emerg.

I suppose an ambulance is an option too, they tend to listen more than the nurse and I can get reimbursed for that cost.

I had better scoot and get to work.

Warm regards and the healthiest day to you and everyone who reads this.

Sid

[Jules]

If you find it stressful trying to make sense of reports & images then don’t worry about it; usually members post them when they’re trying to get a diagnosis & want us to have a look to see if it might be ES, but you have ES confirmed… If ES is vascular it can cause brain fog, plus lack of sleep can’t help…so getting your head around new things might be down to the that! I remember when I was at my worst staring at lettuces in a shop & I couldn’t make sense of all the different sorts! So medical reports I can see can be hard !

[Sid_Byker]

Thanks Jules,

I’m in a bit of a panic because I am flying to Vancouver tomorrow.

I prefer driving places because they I can have absolutely everything I might need and I am in a protective bubble in my car with the perfect climate, music, speed, ambiance…

I will be at the Climate Strike on Friday which I am sooooo looking forward to, and then taking a Pre-Retirement seminar provided by my employee pension plan through work.

The vagas nerve thing is not for people with ES, it was recommended by my RMT as a mood booster.

I am in a new world now.

I found this:

Eagle syndrome is a rare condition caused by elongation of the styloid process or calcification of the stylohyoid ligament. Patients with Eagle syndrome typically present with dysphagia, dysphonia, cough, voice changes, otalgia, sore throat, facial pain, foreign body sensation, headache, vertigo, and neck pain.

Which works for me for now, I only had to google a handful of words.

I realized this morning that I spend a lot of time in the shower now, I spend time with the water hitting my head behind my ear because it is soothing.

Last night I smudged my face with sage and i could feel the smoke touching me and the tight muscles just let go. I just did that again right now.

I’m going to try and find a nice little backpack when I’m in Vancouver so I can start walking to work and carry my lunch. I notice that I feel a bit uneasy when I drive in small town rush hour traffic - 9:00 and noon. Plus the walking boosts the mood and is good for the heart.

There are some foods that really feel good in my mouth. Last weekend I ate a frozen dessert that wasn’t supposed to be frozen. I could hardly stop myself. When I get home I’m going to make myself some yogurt/fruit pops and freeze them. I think I’ll get some extra protein in there too with Protein and Greens.

Normally I don’t like cold at all, I drink room temperature water with no ice ever. Lots of tea.

I thank you for the note and information and good thoughts.

I actually went back to the river on Saturday with a friend and her 6 year old and his bike. We cooked on the fire and saw the Kokanee in the river on their spawning journey.

I rode my bike over to pick the little guy up on Sunday and we went for a ride and to the BMX park - him, not me.
I spoiled him with hot chocolate outside at Hot Shots and then to Dairy Queen for dinner.

I admit I fell asleep while we were watching his tv show and he cuddled into me.

The worst pain is occasionally when I’m eating and suddenly when I go to swallow it feels like there is a fist size medieval flail in my throat.

The other is feeling like I’m going to drown in my own saliva in the middle of the night. Waking in a panic, CPAP on my nose and head and trying to move quickly to lean forward and try to swallow. I sleep very propped up because it is just easier to breathe.

I feel like I am getting unpleasant sensations in my solar plexus - it just feels so unpleasant and makes me very alarmed. It is about the spot where pain meds would start to burn, but it doesn’t burn it just makes me aware of a horrible feeling there.

I was pretty crushed by my chiro. yesterday. I sent off my xray to his office and an explanation of what ES is.

I expected that he could spend 2 minutes finding out what is going on with me.

I arrived to find that he had a print out of my x-ray and knew nothing about ES. Just on a regular printer. Right!!!

There is a new chiropractor that opened by my office and I will be checking them out very soon. Walking distance is so nice too.

My emotions are still all over the place and when I told my friend and temp replacement today we both had a little cry. I’ve cried with her before because we are both people that talk about things.

I am going to enjoy my vacation days and the climate march and all the fab. food in the city. My friend loves to walk too, but I might have to pass on the dancing. Dance spots usually don’t start until after 10:00 and I’d love to try at age 60, but I am babying myself these days. Early to bed, good nutrition, great care and love… nurturing.

I do feel like I landed in the most caring nest in the world and I am so grateful.

Warm regards,

Sid

[Sid_Byker]

Hi Jules,

Yes, I agree. I was getting frustrated with all the medical jargon and right now is not my most attentive nor is learning easy currently. I find I can’t endure reading things that aren’t made accessible with white space. Text messages annoy me because of the eye movement I think. It tires me quickly.

Mine has not been confirmed by an MD. My dentist popped my pan x-ray up on the tv and pointed to the white squiggly thing beside a red arrow and asked if I could see it. Oh yea.

The description that he provided didn’t mesh with my symptoms off the top, but I came home and googled and I just knew.

I am incredibly blessed in that I have a really amazing extended benefits health plan through work and once diagnosed I can access the EAP for additional massage, acupuncture, counselling, etc.

I had an emotionally traumatic incident happen almost exactly a year ago and I used sick time with no issue and then the EAP gave me unlimited massage (weekly), unlimited counselling with my psychologist and 5 treatments with a Medical Qigong Master that I have worked with in the past. It was worth
about $2,500.

I have exhausted my acupuncture and have one last massage next Saturday before my benefits are exhausted for this calendar year and I’ve read that acupuncture can help so perhaps they will give me weekly visits

We have a “Not myself today” program and work and really support mental health. I had no issue messaging late Thursday to say I was taking a day to absorb this news… and cry. Get it aaaaaallllll out.

I am going to book some time with a dietician, (sp?) I’m sure I can kick up the nutrition and I’ve been on a mission to improve my sleep hygiene for about a year and a half.

I’m dealing with a burned out adrenal system (1.5 years) and pre-diabetes (1 month) plus I’m a 60 y-o female and still get hot flashes and probably other symptoms.

For several years after I bounced off the mini-van I was so cold I wore merino wool sweaters in the summer and doubled up in the winter + long underwear.

Don’t you worry, lots if people mocked me and questioned me. I knew it was odd.

I would just reply that I was 55 or 56 y o woman and I know if I am too hot by now. Seriously.

Small Town.

I am just counting my blessings and certainly the you and the others that have been writing to me are at the top of my list. #1.

Getting unbiased opinions on surgery and drugs is priceless. Feeling cared for by my new club makes me feel like a pink unicorn with oversize eyes and a rainbow mane and tail, covered in sequins with lots of streamers and hearts all over in different colours.

Take that emojis. I think I’ll call her Sparkle.

Much gratitude and warm, healing thoughts to you.

In Solidarity

Cydne

[Sid_Byker]

That is so encouraging. Best wishes to you.

I’m prepared to go set up a tent on the BC legislature next spring if I don’t get some good results.

We need a celebrity to pick support ES and then get a day named to raise awareness.

I’m infamous, but I don’t think that will help, and only in a small town.

Does anyone know an athlete or musician that would start wearing a symbol for us?

I am thinking Theo Fleury. I just love him. I met him in Invermere last November. I waited in line for my autograph, hug and photo. He is amazing.

He has a fund raiser golf tournament every summer outside Calgary. I broke my leg in the town he was born, Oxbow Sask. He spends a lot of time speaking to raise awareness and fundraising.

Those of us in Canada could form a group of some sort and get charity status for fundraising. Research, education for every dentist on ES, getting more surgeons

Not to be indelicate, but I keep reading that ES is trauma related.

I have a mountain of traumas named after me from early childhood to just a year ago.

Are people identifying as recent physical trauma - which I also have from chewing the nicorettes like a fiend, or are there others who identify perhaps with C PTSD?

My forehead feels like my eyes feel when the sun is too bright. Can anyone identify with that sort of thing? Finally I know the feeling.

It was unbearable pain that drove me to my dentist on an emergency basis last Thursday and the next day there was no pain at all and nothing besides an examination and x-ray.

If we were to form a society or foundation… I’m not googling right now. Then we could lobby a friendly government to assist western Canadians (and I mean BC) to get the surgery we need in Canada and close to home.

Along with trauma I have a boatload of triggers - crossing borders, dealing with authority, being questioned… I could go on.

I don’t have 10/10 pain, but I do have low grade pain in numerous places from the neck up and I have a hard time keeping my tongue straight and when it twists left it rubs on my teeth causing wounds. My mental/emotional health is being affected and I was already having a hard time holding it together before the x-ray.

Yesterday my chiropractor told me to stay in the light. I disagree.

Like the sunrise, let us return to the light.

Warmest regards.

Sid

p.s. I aplogize in advance if I’m not replyuing properly on this site. I find it a bit confusing and right now studying on screen is most tiring.

[Isaiah_40_31]

Hi Sid_Byker - You’re doing fine with your posts. What you post provides interesting reading, & you do have some interesting thoughts.

As far as ES being only trauma related, we do have some members on this forum whose children have been diagnosed w/ ES in addition to the members themselves, thus we must concur that it can also be hereditary. The three possible causes of ES are trauma to the head/neck, genetics, & surgery in the throat or neck which causes scar tissue in the area where the styloids are. The scar tissue applies pressure there which causes the body to lay down unnecessary extra calcium as a supportive measure.

I’m sorry for all your health challenges & the symptoms you’re having from ES. You quoted from something you found about ES online. That said “patients with ES typically present with…” In my opinion, there is no “typical” when it comes to ES symptoms. Each of us seems to present with a different set of symptoms, usually some are on the “typical” list, but often, many are not on any list you’ll find on the internet. The Bible says in Psalm 139 that we are fearfully and wonderfully made i.e. we each have a unique physical design.That is fully realized when the vast array of ES symptoms & how they differ from person to person is considered.

It is good that you have good medical resources & insurance coverage so you can explore many options for dealing w/ your pain & symptoms until you have an official diagnosis & can have surgery. That is a huge blessing that many people on this forum do not have. I’m glad you have friends in your life who sympathize & support you. That is so very important.

Enjoy your march in Vancouver, but listen to your body & don’t overdo. You’ll be back home soon & can resume the health care routine that works for you.