Henrik's Story

To explain it rougly, i have been examined by a private ENT specialist who also did the CT scan. He did infact find out very quickly (that I have ES) by just touching the sides and the muscles, nerves etc behind the jawline and also behind my ear. So it was easy for him to just get a confirm from the CT scan. The styloids is very visable, and its elongated and calcified on both sides.

He gave me the diagnose talk over telephone the next day, and sent a refferal to the hospital here in Norway that deals with these surgeries. So my ENT specialist does not perform surgery himself.

We have mainly two hospitals that deals with Eagle Syndrom, the one is in Oslo the other one is in Trondheim. The refferal was sent to Oslo.

The specialists in the hospitals have about 10 days to investigate and look at the refferal. So i think its about within 5 days im going to be schedueld for surgery, im not exactly sure about anything right now, i just know at this point that my ENT specialist have sent refferal to the hospital about reccomended surgery.

But im pretty sure that it will be a surgery, and thats my wish infact ! Because the styloids is crazy elongated and calcified and the symptoms gets worser every week.

Also here in Norway we all have our own personal doctor. It’s a pitty sometimes and sometimes it’s great, but for the most part it sucks ! Because everything has to go through his desk, even the slightest decision regarding health care has to go trough his desk, so its a fearly slow system !

For example now after I have been examined by a ENT specialist, all the follow up work is going through my doctor. If I need more help from this ENT specialist, my doctor has to send an refferal to the ENT. Lots off paperworks!

Anyways, im schedueld to visit my doctor this week for follow up work and planing. We are going to sort out what we can do and what I can do myself to manage pain, work and daily day to day activities.

Because im actually suposed to start in a new job the next month, but im not sure if it’s possible for me to even work.

So I need to see and have a plan to make it work out for the company aswell.

I’ve also been in touch with a physical therapist, whom may can help. I dont think she can do anything regarding Eagle Syndrom and the symptoms but i think she can help with other things like mobility, excercises for upper and lower back, shoulders, stumack and also helping with diet.

The diet part is crucial i think, because my stumack is getting ****** up by painkillers(i have lots of reflux). And also i think there is lots of foods that can for example be anti inflammatory and also help blood pressure etc.

Im also dealing with something called FHH short for Familial hypocalciuric hypercalcemia, it ****s with the calcium in the parathyroid gland, so managing diet will be crucial! It’s very complicated, because some off the painkillers can actually interfere with the medication i take for FHH.

It’s also a possibility that cortisol/cortisone can interfere with FHH. Im sure ENT doctors/surgeons know this.

The last three things i’ve done that may help is i’ve been in touch with an physcologists emergency help program that we have in our municipality, im not schedueld there yet.

I have also been in touch with pain outpatient clinic in the nearest hospital, not schedueld but my doctor is going to send an refferal.

And last but not least i have been in touch with the Labor and Welfare Administration, they may be in help regarding the forthcoming situation about work, sick leave, economical situations etc. Im also geting a contact person there whom i just can talk to about anything.

Now to the trick part!

My family, work and also my girlfriend needs a little help to cope with this.

My Sister is infact an well educated physical therapist, but she had never heard about Eagle Syndrom, Styloids or anything about this. She was in a bit off a shock when i did break the news. In case you wondering its not going to be my Sister helping me as an physical therapist, she lives in another city than me.

Anyways, is there anything that my family, friends, girlfriend, work or any related people can do to cope with this? Is there any course or community for next of kin?

Specially for my girlfriend, she have been dealing with me and with this damn Syndrom for too long now. We are both on our breaking point to say it so.

She is very supportive and she has infact been a key role the whole time, but enough is enough sometimes and she deserves every bit to feel that way !

Its hard on here, because she doesn’t know how to be at help. Even i dont know what help i need and what I need at all sometimes. As symptoms can vary alot !

And i mean alot !

The styloids trigger all my nerves sometimes, and it triggers alot off my “social nerves”. I can be happy and the next minute i can be sad or angry/upset. The funny part is that everything changes in a split second. Sometimes every symptoms strucks me at once, and sometimes i will have sort of seizures with moderate muscle spasm almost like tix.

And when everything hits me at once, my “social nerves” just stops reacting and i sit there dazed, confused, dizzy and almost like in a trance coping with the extreme pain. My vision and hearing is affected by this.

My girlfriend is confused aswell she doesn’t know what to do, what to say or even how to talk to me, because sometimes im able to talk other days im not even going to try to talk because its difficult and painfull.

And also the lack off understanding by other people is the most difficult part off all this! Sometimes this is more painfull than the actual pain from symptoms!

My father has been dealing with migraine his whole life, so the seizures im talking about here is quit similar to migraine seizures. He just sits there all tensed up, dazed, confused and in extreme pain with blurry vision.

As far as i can find there is only a small supportive group in our hometown that deals with chronical illness, but im not sure this is the right group to contact for my girlfriend.

Thanks for your support !

You’ll Never Walk Alone !

Hi Henrik,

I am so very sorry for how severe your symptoms are & how it’s affecting your family life, social life & ability to work. I am glad you’ve got a diagnosis & the wheels are turning to get you to someone who can do surgery to help you.

Based on what you’ve said, I have concerns that you may have vascular outflow obstruction meaning either your internal carotid artery(ies) (ICA) or internal jugular vein(s) could be compressed by your elongated styloids. The ICAs take oxygenated blood to your brain, & your de-oxygenated blood flows out of your brain & back to your heart through the IJVs. I suspect the ICAs more because of your seizures & your periodic trance-like state. It would also explain why the symptoms come on suddenly. Do you notice your symptoms get worse when you turn your head in a certain way i.e. left/right or up/down? Is one styloid causing more symptoms than the other?

To check for vascular compression, a dynamic CT scan with contrast is necessary. Dynamic means the scan is taken w/ your head in different positions to see if a position other than neutral (looking at the ceiling) causes ICA or IJV compression. It’s fairly critical to have this information before you have surgery so the surgeon can work to get your occluded vessel to open back up which in turn will relieve your symptoms.

Your girlfriend is welcome to join this forum so she can read all the information about ES & better understand what is happening to you. Ben’s Friends also hosts a caregiver support community which she is welcome to join: https://www.caregiversupportcommunity.org

There are a series of very helpful posts written by our other moderator, Jules. Click on the magnifying glass icon in the upper right & type ES Information: into the search box & all of the posts she’s written will come up for you to read. You’ll be extremely well educated about ES after you read them.

If your teeth hurt, don’t get any pulled out. Tooth pain does not necessarily mean you have an infection & the tooth needs to be pulled out. It is a very common ES symptom & comes from the trigeminal nerve being irritated.

The cranial nerves we know are bothered by ES are the facial nerve, trigeminal nerve, glossopharyngeal nerve, hypoglossal nerve, spinal accessory nerve, & vagus nerve. There is some question if the vestibulocochlear nerve may also be impacted by ES. To better understand about these nerves there is a series of YouTube videos called Two Minute Neuroscience that give information about each one. Here is a link to the video for the trigeminal nerve: https://www.youtube.com/watch?v=FhbQBrX3Kq0

I hope this additional information helps you & your girlfriend. I’m also sorry to hear about your father’s migraines. It makes me wonder if he might also have IJV compression that has gone undiagnosed. Not too many doctors know to look for that.

Sending you a hug & hoping/praying for the best possible outcome once you see the right doctor. :hugs:


To answere it shortly regarding the bloodvessels/vains. I belive it is somehow disturbed/“jammed” because off the seizures i get. And from the blood pressure tests i ran a couple off months ago it was quit high or unusual high. I ran that test with my doctor who is also cheking up on my Familial hypocalciuric hypercalcemia. And when i sleep at night, especially lying with the left side down on my pillow i tend to wake up or “jump scare” wake up and almost out off breath sort off. As i mentioned my left styloid is the severe one, its somewhere in between 3-3,5 cm long and the calcificaton is about 4,5 cm.

The ENT doctor has only given me the diagnose and confirmed with the CT scan, he has been honest that he has no experience with ES neither my doctor. So wethere my vain is jammed/blocked or disturbed they can’t say that much about it since ENT did only diagnostic and confirmation from CT.

As i mentioned my ENT specialist did send the refferal to ENT specialists in the hospital off Oslo. I think they have done some chek ups from the CT scan, maybe they have discused something i dont know actually. The problem is that i get very little information about what is going on behind the curtains and what is going on with the refferal and all, but the latest update i’ve got so far is that the refferal was approved in Oslo and now has been sent to the hospital near my hometown. They have some few ENT specialists there. Maybe they want to take more scans/pictures/tests i dont really know. But something is happening and as long as the healthcare system is working on my case to get to some treatment im happy.

This week i took part in follow up with my doctor, he is working his but off to make sure im geting taken care off, i feel im lucky to be honest. It’s rare to see doctors care that much.

Me and my doctor have a plan now for the next three weeks. The plan is that he is going to work and do a little research on ES because he knows very little about it and he is also going to work on how to help me regarding handling pain and life in general, he is also going to chek and work on what is possible pretreatment before a surgery.

My doctor also put me on sick leave for another three weeks, he was quit strict with me that im not supposed to work right now. Before im even thinking about going to work we have to make sure im geting good resulst from medication, treatment from my physical therapist and also geting help from the work and welfare administration.

My doctor has given me a few tips to deal with the pain and also other musculare, nerve problems.

Im going to try out a mix with some painkillers and a medication that is called vimovo. I dont know if you have heard about it, its hard to explain.

Im also seeing my physical therapist next week. Then we are going to work on some treatments that may help, som excercises i can do to stabilize the rest off my body and also my core and also work out proper diet plan and see if we can make some changes with the food that i eat.

The past week has been very positive, the pain has become more stabilized after just talking to people, talking to people in the healthcare system and also geting the recognition from them helps alot!

The feeling off finally being heard and understood is helping very much.

So a little notice my doctor did, since i deal with Familial hypocalciuric hypercalcemia. The main problem with this is calcifications in the body, mainly liver,stumack and skeleton.

So he is thinking that my ES came from FHH. Because i have not been treatet properly for that since i was a kid. But he is not sure, neither am i. And i can’t find any discoveries or any theory that explain any conection to FHH. But maybe you guys know ?

Im going to discuss this with my endrochronological doctor who is taking bloodwork and doing the chek ups regarding FHH.

My girlfriend did some research on her own, so she is figuring things out and is geting help from her father actually.

Her mother has a chronical illnes aswell called FND, so her father knows quit alot about handling the toughness in life dealing with a sick family member.

So i think i will give you guys an update after three weeks prehaps.

Is it possible you guys can do some research regarding FHH? im just curiousse about it !

I’m really sorry you have FHH & are suffering from it not being recognized or treated for so many years. I hope that once you have regular treatment, you’ll feel better & your body will function better.

Regarding FHH as a cause of ES, one of our members (a former moderator here) who has parathyroid dysfunction did suggest that hypercalcemia/parathyroid dysfunction could be a cause for ES to develop. Other things that have been considered are -

• head/neck injuries such as whiplash, concussions, heading the ball when playing soccer & other scenarios that cause head/neck injury.

• tonsillectomy

• hormone imbalance (parathyroid dysfunction could fall into this category)

• genetic predisposition (i.e. other immediate family members develop it w/o any provocation such as injury, hormone imbalance or parathyroid dysfunction.

• one member suggested that wearing braces to straighten the teeth could be a cause. This makes some sense since it changes how the jaw joints are lined up which could cause stresses on the skull which in turn could cause styloid elongation &/or stylohyoid ligament calcification.

Could your seizures be related to FHH or is your doctor concerned there is something going on w/ your vascular system? Whatever the case, it sounds like your doctor is wonderful & is taking good care of you. I highly recommend you give him the link to this forum so he can read posts on here. We don’t let doctors who don’t have ES or have family members w/ ES join, but he would still have access to all the public posts & research paper links which might really be helpful.

It’s been a while since the last update.

Finally after almost a month with hard work, research and visiting doctors, physcologist and physical therapist. Im slowly bringing my life back, slowly gaining control over the situation regarding pain and struggles with ES.

Im also going to have a consultation with a surgeon the 21st off november, probably going to find time and place when to perform the surgery.

So it feels almost like a train that has been derailed its slowly getting its grip and on tracks again.

The past month my physcologists has helped me to organize activity levels and we have found a plan to monotize and moderate activities regarding muscle pain,nerve pain etc.

I’ve started going to the gym again after almost 2 years with no gym in my life.

I’ve started to do some cardio in the morning as i was also doing 2-3 years ago.

My diet has changed to more fruits and vegetables that has anti inflammatory nutriotions, alot off blueberries and avakado aswell as citrus fruits.

Blueberries helps alot to calm the muscle tissue around the neck and jaw.

My mental health has stabilized aswell.

The pain medication wich i use, works but i dont use it every day like i did in the start. Mainly because i move alot and the diet helps. Offcorse i feel some sort off pain or stress to my nerves and muscles almost everyday, but it is not so much now. Its something i can manage and live with upon til the surgery.

I think the past month if i look back i had maybe 4 days totaly with no pain medication. Wich means i use it only as a supplement at the worst days.

So the game changer here is, mental health and activity and also diet.

I feel that when i have days with severe pain, i take medication as supplement and try to move as much as possible, offcorse moderate movement i try my best to not over do it specially in the gym and thats hard because whenever i lift weights its tempting to push myself. I’ve always liked to push myself when i workout.

And the best part off my day when i have severe pain , is that i can now accept the pain accept the situation and also with understanding what this is calms me down. It helps to accept that this is something im going to go trough a while and i actually can feel sorry for myself with out any regrets, feeling depressed and confused about why im in pain and why i feel sorry for myself.

So when i have the worst days, i can kick back and listen to my body what it needs, without feeling depressed or anything sort off that. I can relax and just say to myself " yeah not today, you need to rest" and being totally comfortable with it and when i kick back and relax i can still hold on to my diet and not getting tempted by opening up that bag of chips or taking an extra sugery drink.

My sleep is also good, i take liquid melatonin as supplement. That im sleeping good also helps alot with the pain, its pretty obviouse that sleep is crucial with ES because off the tension in the muscles, nerves etc.

Somedays its just difficult to sleep, i think it is like for the most off us. But wether i get 7 hours off sleep or just 5 hours off sleep i feel much more rested with taking the melatonin i think it helps alot with the quality off sleep.

So to sum this up and what has helped me the past month.

Sleep, movement and activity, diet and also rest and talking to people, specially people with authority within the healthcare system.

Also what has helped, is warming up the local pain area. In the morning i’ve taking really hot showers it helps. And also sometimes puting a warm cloth around the area about 10 minutes or so, moving the cloth around a little with different muscle,nerve and bone area.

Next month im going to do some experiment, im going to do some yoga with my mother i law. See if it has some effects, wether it triggers or calms the muscles nerves etc.

One more hot tip for this ES, even how severe the pain is i must say getting fresh air and a little bit off sunlight has helped. Offcorse its painfull in the start, but it will helps more to get off the couch and just push yourself a little bit to move and get fresh air!

Hopefully this is valuable information to others that is strugling.

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@Henrik - just want to share that yoga cased my ES twice in my life a lot of complications. especially looking up when you are on the floor. i still do yoga but you have to watch what triggers your ES with different poses. be careful


I’m glad that you’ve found some tips to help you while you wait for surgery, and thank you for sharing them! Heat always helped me more with the pain although I know ice works for lots of members. Anti-inflammatory diets have been mentioned too. @vdm & @TheDude have done lots of research themselves working on different muscles & have posted about what they’ve found helpful, I’m glad that you’ve found exercises to help you.
Let us know when you get a date for surgery!

Schedueld for surgery in the early months off the next year.

This journey is finally coming to an end, but maybe it is just the start ?

So in the last post i talked about excercise, and it helps!

I have lost 5-6 kg off solid weight in almost a little over a month. I mainly do fasted cardio in the morning and weightlifting 3 times a week. I do 3 weeks on and 1 whole week of rest.

That i have lost some weight i think will affect cronich pain/chronic sickness. And also give me the foundation off a healthy body that can work after surgery for recovery.

Im schedueld for surgery in february/march. My surgeon is doing the paperwork now for the upcoming surgery.

I’ve had a conversation with him today, he explained alot about my ES. The styloids is actually normal but there is a calcificaton between the styloid and the ligament, from the calcificaton it grows to solid bone down to my neck/throat area. It is almost pocking trough my throat. Total lenght is 4,5 cm on the left side and about 3,5 cm on the right.

They are going to do the surgery extraoral, because off the length and it was not easy to get acess intraoral. They will also perform it on the both sides, if they can.

The surgery will be at St Olavs Hospital in Trondheim(Norway)

The surgeon walked me through the consequences off the surgery, things like bleeding,swelling etc.

Just cross my fingers and say a prayer that it will be a okey surgery and with few complications and pain.

This will also be my first surgery ever, i have never been through something like this so im not scared or anything im just curiouse about it all, how it will feel, will it be painfull, how good will i be taken care off, how long will i be needing to stay in at the hospital.

It’s going to be an experience that’s for sure !

  • Henrik

So pleased that you have a date for surgery! There’s lots of advice on here about what to expect and tips to help recovery, so you can be prepared! Let us know when you have a definite date & we can add in our prayers to yours!

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Thank you for the update, @Henrik! You are absolutely correct that going into surgery physically fit will help with surgery recovery. You have worked out a good schedule for yourself. The weight loss is also good.

I’m so glad you have a surgery date & don’t feel afraid of surgery. I had the same attitude before my surgery. It would be nice for you to get both done at once, but many doctors in the US will only do one at a time because of swelling in the throat after surgery. If your surgery is bilateral, you can ask for a course of Prednisone to help keep the swelling down.

Yes, please let us know when you have a surgery date.

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