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Eagle Syndrome - Online Support Group

Success Stories!

I’m sure that the scan will show something, I know how stressful the waiting is though, been there…I was so pleased when mine showed bilateral jugular compression!! Just as Justbreathe says so well! Is the phone consult before the appt. with Mr Axon? Just thinking if you could ask for the report to be sent to Mr Axon aswell if you have it in time, it’ll be helpful.
Thinking of you, we do know how you feel…

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Julia,

I am sure he heard your plight simply by the fact that, as you said, he sent you for an immediate CT scan. If he had not heard you that would have not happened. It is hard to feel like what we say to these doctors when we are in so much agony is what we really wanted to convey. Looking back I always wish I would have said or done things differently and I am in the healthcare profession, understand the medical terminology and system. And BTW being composed is a very good thing :smirk:

I have found it very helpful (and always tell my patients to do this) to write all of my questions and concerns down on a piece of paper and bring it into the appointment with me. be sure to let the doctor SEE it so he/she knows you have given this thought and there is a list you would like to go over (try to keep it short and concise,maybe 3-4 points at most). It will also help keep you focused and on track during the appointment.

You should be able to get ahold of your CT report, I agree with Jules to try and take it with you to Mr. Axon or have it sent to him. You have to be your own advocate and shorten the steps these people need to do so things don’t get lost in the shuffle.

you can do this!!! Hold on, one breath at a time. Use ice, drink warm tea with honey, surround yourself with loving, caring thoughts…your appointment is coming very soon :pray::purple_heart::sparkles:

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Julia,
YES YOUR PAIN IS REAL!!! All pain is real, however we are not our pain - remembering that in the midst of great agony is very difficult. We cannot do this alone, enter the “specialist” stage left…I am sure the CT will bring clarity to your story. Your perception of him being genuinely interested and knowledgeable is the first bridge crossed.

Crossing fingers, toes and all things crossable with you :crossed_fingers::sparkles::pray:

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Thank you so much. :crossed_fingers:

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It sounds like he gave you time & was a very good listener, I’m sure he’d have been able to feel the SP too so will have taken you seriously, I can understand him not wanting to commit to a diagnosis or treatment without a CT, doctors these days like to have the hard evidence of test results in front of them, even when symptoms are clear! (Sadly!)

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@BrooklynGirl my surgery side ear also felt full for a few weeks and my jaw was unexpectedly painful following surgery. These issues gradually faded away. Hang in there!

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@redbird773 Thank you. Still dealing with these issues but doing my best to be gentler to my self and understand that this will take time.

Peace,
BG

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Hi Jules

I hope you don’t mind me asking, how long did you have to wait for surgery whilst you were having vascular symptoms? And is there another type of scan (venogram?) to follow CT scan if vascular involvement is suspected? Would be great to know so I can try and be ahead of the game!

I had to wait about 6 weeks for the CT results (it was a CT with contrast I had), & then just over 3 months for surgery still! They don’t seem to treat it as particularly urgent, but I was getting pretty desperate!!

Wow. At least you knew you had a popular surgeon but well done for getting through the wait. I hope you felt suitably relieved afterwards despite the after effects x

Felt lots better a few days after the surgery, so pleased I was able to get it done! Hopefully will be your turn soon…

That’s a real set back, but there is research which shows it’s not just the length of sp’s which causes symptoms but the angle & thickness too. Did you see what the lengths were? Sometimes doctors use different ‘average’ lengths; anything from 1.5cms - 4cms! You could print off any useful papers (in the Newbies Guide there’s info) & take them with you to your appt. if there’s time? Otherwise see what MrAxon says; raise this with him, will he have the results? If it can be felt, then I would’ve thought that they must be a bit elongated & certainly angled…you have lots of typical symptoms too.
Best wishes, & a big hug…

@julia
Your situation sounds so terrible, I am very sorry! Is the ultrasound you have mentioned intravenous (inserted with a catheter in your groin and fed all the way up through your internal jugular vein to the base of your skull), or is it just a sound head placed on the outside of your neck? There is a huge difference between the two, the IV ultrasound is much more informative and specific being able to measure percentage of stenosis and pressure gradients in the vein. Hofully your appointment with Mr. Axon will be more helpful and he can guide you in the right direction. Hang in there, praying for you!

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PS…if you do have either ultrasound talk to them about being able to put yourself in a provocative position during the test - if it is only done in neutral (which is typical) they might miss it! :purple_heart:

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Julia,

I’m also very sorry to hear about the outcome of your appointment w/ Dr. Hughes. You have some good information from Jules & JustBreathe. I would also add that different doctors view the styloids differently where one can see them as elongated, another might not. Doctors often don’t trust the radiologist’s measurements & thus choose to re-measure the styloids themselves. Additionally, you made no mention of calcified stylohyoid ligments. These can cause all the same symptoms as elongated styloids. It is possible you have ligament calcification that is pushing on your styloid & creating the sensations you feel in your throat. Additionally, if your vagus nerve is irritated by styloid or calcified ligament, it, at least in part, innervates your throat & could be helping to create the gagging, strangling, & choking sensations.

I, too, hope Mr. Axon will be more helpful tomorrow. Make sure to take a list of your symptoms so you can read them to him as opposed to just reciting from memory.

I realize you might not read this till after your appointment. Please tell us how it goes.

I’ll be praying, too.

:relaxed:

Hello

Thank you everyone for your messages. I don’t know yet what the ultrasound will be. I’m now thinking the bone might be the hyoid. I have a popping hyoid when I turn my head to the right and the hyoid is main source of pain in neck. Hyoid symptoms seem similar to ES and I have pain spreading to front of neck, chest, shoulder which isn’t nerve pain. Time will tell I guess.

Hi Julia,

The popping sensation in the hyoid area often comes when the s-h ligaments are calcified & tether the hyoid bone so it can’t move freely as it’s meant to. Do mention that symptom to Mr. Axon & ask him to take a look at your stylo-hyoid ligaments to see if there is calcification there. Eagle Syndrome is defined as 1) elongated styloid process(es) OR 2) calcified stylo-hyoid ligament(s) OR 3) a combination of elongated styloid process(es) AND calcified s-h ligament(s).

Let us know how you get on today, thinking of you…

Hello

Yes I will do, thank you. I’m surprised calcified stylohyoid ligament and/or hyoid hasn’t shown up on the scan. Does make me wonder if the radiologist knew what they were looking for. I think the consultant was surprised as well, hence suggesting a more localised ultrasound examination. I will hope for better advice today. Whatever it is, it’s coming into my mouth and the pain is dreadful. I can’t believe medical professionals can ignore people with these symptoms. I went to A&E yesterday and cried my heart out, and just got told nobody in ENT could help, go home and take codeine. :tired_face:

Hello

Well my appointment with Mr Axon was a breath of fresh air! He does feel and palpated the bone and is ordering his own scan. He could not tell me if it was styloid or hyoid yet but I presume he would be able to know that before arranging surgery, as he apparently doesn’t deal with hyoid. I somehow need to find out what it is, but of course I understand it could all be linked through calcification. It seems my case is a bit mind boggling but I would absolutely feel confident in him reading a scan properly. He was very honest about risks and uncertainties so I’m sure he will give me an honest report and take it out regardless of length. He claims to be doing 4-5 styloidectomy a week! Thank you for keeping my spirits up. I feel there is light at the end of the tunnel. I could cope with neuralgia but I can’t cope with the bone in throat and not swallowing. I would do anything to eat a proper meal again!

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