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Eagle Syndrome - Online Support Group

Success Stories!

The stress & exercise were biggies for me too; I had bilateral jugular compression which was causing intracranial hypertension, had some scary vascular symptoms…much better after surgery both sides, still get a little head pressure with stress now, the veins don’t always spring back fully, but sooo much better & I have my life back! Hope that you get some relief soon!

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Hi Jules, I don’t know how you did it with both jugulars compressed. I think what is happening with me is the styloid is the right length but it’s a little thick and angled, and was hiding under a large piece of tonsil scar tissue which I have read can encourage growth of the styloid. The scar tissue broke down and the whole area stretched, allowing freedom of movement to the styloid and hyoid. I’m really hoping if it gets taken out at the skull base and the hyoid is nibbled, symptoms will reduce. I’m only bothered about the vascular stuff, I can cope with neuralgia pills but I don’t want to feel like I’m dying several times a day! I’m hoping for surgery very soon x

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Hi Jules,

Just reading about your B IJ compression and resulting intracranial hypertension (IIH) - so so sorry and I can relate! Wondering if your resulting IIH caused a CSF skull base leak for you or were you able to evade that? It sounds like the styloidectomy relsoved your issues, did you have any type of venoplasy to the IJ’s as well? Happy Saturday!

No, I luckily didn’t have a CSF leak! That must be grim for you… I’ve not had stenting done, it was mentioned but my doctor said it can cause pain & they can’r be removed once in- my vascular symptoms were so much better that I didn’t want to risk getting pain back!

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That is so great your IJ’s bounced back enough, don’t blame you for not venturing further. So I take it the IIH resolved after the ES surgery? Do you remember how long that took?

The really scary symptoms (I had this horible feeling that my brain was being rolled up & squashed, weird but I don’t know how else to describe it! I felt like I was going to die!) went I think within a week- but my surgeon uses a drain after surgery so I didn’t have trouble with swelling, I would guess that it does make a difference. The other symptoms eased off gradually, but any stress, exercise, heat flying definitely set most symptoms off again. I would guess too that it will depend on how bad each side was- my left was alot worse, so made the biggest difference having that out. The right not as bad, but obvs still causing problems, so that was taken out a year later. I do notice a few symptoms still under stress & flying etc., but easily bearable!
How close are you to getting surgery?

Stress…wouldn’t it be nice to find a way to take that away??? :crazy_face:

My surgical date is August 19th. Trying to focus on each moment as they come and not get ahead of myself…don’t want to miss the beauty and surprises staring me in the face :blush:

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Not long now! To avoid stress would make life so much easier! :joy:

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Stress seems to be a theme in many threads. Not knowing what is causing the pain, the worry of surgery, the post op issues of surgery, healing and on top of all that some of the nerves disturbed during surgery can cause anxiety - it is all too much at times.

Justbreathe - I can’t give any better advise than that. Just breathe and enjoy life’s small moments. (wish I could heed my own advise)

Peace.
BG

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Has anyone had their esophagus/breathing compromised by any part of the stylohyoid chain? My family now telling me I am fighting for air at night making wheezing noises.

Yes I definitely have this too! If left unattended developements can include sleep apnea, loss of tongue suction that results in mouth opening and your tongue slides backwards into your throat, head position that rests slightly up and back which then opens your mouth further and partially blocks your airway as your head sinks down onto your neck. The part of your nervous system that works without you thinking about it (the Autonomic Nervous System) will be triggered as your oxygen saturation decreases and wakes you up just enough to get you breathing again. Sounds like this is what might be happening here. It is usually scarier for those hearing you. Are you sleeping elevated, like 30-40 degrees? This can be helpful to keep your head and neck in a better place until you get these little buggers removed!

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Wow. This condition really is set to finish people off isn’t it!

Thank you for sharing your experience, I am increasingly anxious and this is not helping! I woke myself up with it last night. I am awake a lot in the night with mouth wide open and dry from the amitriptyline. I guess that’s what is happening. Last night when I went to bed the styloid was pressing into my pharynx. As it grinds away at the tissue in my throat it seems to bring ever increasing symptoms! I hate my young children seeing me like this. Roll on surgery and good luck for yours x

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The amitriptyline is also a mild sedative which may be a factor in the sleep disturbance, did you or your family notice this in relation to starting this medication? It can also be a factor in your mood, designed to help but in some people can worsen anxiety/depression. If so please talk to the doctor who prescribed it for you, there are so many options on the market, just have to find what works for you.

Do you have a surgical date yet? Hold on, you will make it through this!!! :crazy_face::purple_heart:

Hello yes Amitriptyline makes me drowsy and I also have been given diazepam for panic attacks and codeine for the pain. I have panic attacks when I get the strangling / tight throat pains and struggle to breathe. I am a walking pharmacy! It has taken about 8 weeks to get into a good place with Amitriptyline, It has helped (finally) enormously with glossopharyngeal neuralgia and headaches. I am on 100mg a night. Thankfully I do seem to wake up during the night to catch my breath. I was wondering why I was waking at strange times of night, now I realise it’s my body trying to breathe! I am now just left with tissue pain and inflammation where styloid/hyoid are grinding into my throat and what I assume is vascular compression pain. Every single day the symptoms come and go, and are different at any time of day depending on what I am doing. All i know is, they are getting worse and so I am close to paying for surgery to try and reclaim my life! I know you aren’t far away either. I pray that it helps heal these rotten symptoms for you!

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Like JustBreathe says, if you don’t already try sleeping propped up- it will help with vascular issues too.I do feel for you, it sounds grim…I ended up sleeping in a reclining chair before my surgery, it helped with the head pressure & pain. I was pleased that amitriptyline helped me sleep more though- it was too painful to sleep much before.
Hope you get some treatment soon…

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Can anyone share their symptoms and provide support for relief? I have bilateral elongated styloids and calcified ligaments with bilateral jugular compression. All my symptoms are on the left. Left ear, face, neck, eye pain, blurred left vision, pain under chin with constant swollen node on left near hyoid , left arm pain and numbness down to the hand, autonomic nervous symptoms with intermittent tachycardia, can hear my heartbeat in my left ear when lying on that side and heart beats fast, reflux symptoms, ear fullness/fluid sensation, sore throat sometimes, headaches/pressure, and pain between should blades. I feel crazy and no one understands. Some support would be great. I am going to see a couple specialists within the next month, but worried I’m going down the wrong path. I have neurologists and other docs wanting me to do invasive things like an LP, and other people telling me it’s a psych problem. But I wouldn’t be going crazy if I didn’t have this pain and symptoms. So discouraged.

I had a ct scan with contrast. After that they did a angiogram as my symptoms were getting dizzy when I turned my head a certain way. The angiogram showed the styloid cut off the artery to my brain. That was 6/22/19. My surgery is 8/22. They are externally doing both sides at the same time. I am a little nervous as I am supposed to go to Hawaii a week later. Hope I can make it.

There have been a few members who’ve had both surgeries in one go, but most doctors don’t because of the risks of swelling- there can be lots of swelling with just one side, so doing both at once is often regarded as too much. I don’t want to cause you more stress, but I personally wouldn’t consider going away that soon after having one side done, let alone 2…could you reconsider & get the worst side done first? Or postpone your trip? Recovery can vary alot- some people do feel okay after a week or 2, but some have found recovery really hard & have not felt great for a month or 2! Sorry…will add you to my prayer list for your surgery.

If you check out the Newbies Guide section there’s info about symptoms & what might cause them- it might help you to know that it’s definitely not all in your head, & could be something to show any friends or relatives if you need to.
So the throat & neck pain, & sore throat is easily undestood, ear pain can also be down to irritated nerves. Ear fullness also is a common one; it could either be a nerve issues but otherwise can be a smptom caused by jugular compression- the pressure inside your head can increase. That can also cause the heartbeat being heard in your ear (pulsatile tinnitus), & could also cause the blurred vision too, & headaches & dizziness.
The problems with your arm could be that the accessory nerve being compressed- it’s not a common one but there have been quite a few members with this symptom. The vagus nerve can also be irritated; that can cause tachycardia, and also stomach issues, it’s part of the autonomic nervous system so can cause ANS symptoms you mentioned you have.
I think that’s covered things?
I know it’s difficult when you have all this going on, but surgery can help ; many members struggle for a long time to get a diagnosis, so the fact that your CT confirms bilateral ES & jugular compression is a big step forwards for you. Now you can look for an experienced surgeon that you feel confident with to do surgery. Big hugs to you…

Hi Jules

My CT scan shows jugular compression on my ES side according to Mr Axon. This is despite styloid not being very long (but surrounding tissue has stretched making it mobile). He recommends lumber puncture and angiography, yet I’m pretty certain from the symptoms I’m getting that styloidectomy would more or less solve the issue. I get pressure and strangling pain when I bend over, head down or at certain angles. Basically whenever the styloid can’t be felt in the mouth, it feels like it’s off digging into other structures. I don’t have the funds to progress with him privately, so I wonder if that’s his normal line of investigation and whether you went through those tests?