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Eagle Syndrome - Online Support Group

General multi-topic conversation #01

Hi all.

I remember, when my neck started to hurt, I had a normal X-ray which showed “loss of cervical lordosis”. And to me it quite makes sense now: I cannot tilt the top of my head back, because the styloid starts pushing the neck’s tissues around the spine. Therefore my head is always slightly tilted forward, which makes the upper part of cervical spine straighter than normal. Also, the muscles get tense and the lower part of the cervical spine also gets straighter.

Did anyone of you get similar diagnosis on your way towards discovering the Eagle’s?

I have limited neck mobility anyway following a whiplash injury, so can’t say it’s ES related!

vdm -

It sounds like you haven’t had ES surgery yet. Is that correct? I’m sorry if you’re still suffering w/ this painful syndrome & hope you’re able to get help soon.

I haven’t had one, the current situation isn’t that bad after having understood the bio mechanics underneath and improving the lifestyle. So now I’m just living, looking for options around and waiting until the time when I won’t be able to cope with the symptoms anymore and surgery will be inevitable.
Until then at least I will learn as much as possible about all of this.
Loss of lordosis showed up on one of those reports that I have quite a few from the pre-diagnosis times, and was repeatedly mentioned a few times later.
As a side thing, I like playing with Human Anatomy Atlas program. It gives quite a good understanding how some nerves, ligament, muscles, nerves, bones, blood vessels are laid out around the neck area and what possible impact might be when the head is in one or another position, and what can be pinched by the styloid.

Hi vdm,

So glad your symptoms are tolerable so far. I recall someone (was it you?), in the past, posting a picture of a CT scan showing lordotic loss in the neck. It was very interesting to see the cervical vertebrae in a straight line & missing the expected curve. Does that cause any pain or stiffness w/ head movement or in your shoulders or arms or farther down your back?

Good for you for doing anatomical studies. Human anatomy is very fascinating. Knowing & understanding the layout of your body, especially the neck, area will do nothing but help you as you go forward on this journey. I’ll look up the Human Anatomy Atlas program. I have subscribed to several educational anatomy sites myself. :+1:

:blush:

Hello vdm
My CT & MRI scan show my cervical spine to be almost reversed curve! And yes, it is causing me problems. I have appt with my neuro surgeon on July 31st to confirm everything with my husband in attendance. I plan to move forward with scheduling the much needed surgery on my cervical spine. I am running short on the ability to handle the pain these days and the never ending clicking and grinding is making me crazy as well. Terrified to have someone cutting on my spine, but it seems there is no choice at this point. I’m also not real fond of him going in through the front of my neck! He says they just push things to the side and from there it’s pretty easy access. That all sounds just awful to me as I am pretty sure that will irritate the crap out of the ES! :roll_eyes:

Hi kiZe6159 -

Good to see a post from you! The pastor at the church I attend had neck surgery through the front of his neck several years ago. It fixed what ailed him, & his recovery wasn’t excessively long. Granted he didn’t have ES, but you can’t even tell he ever had neck surgery. It’s too bad the neuro surgeon can’t just remove the styloids & s-h ligaments while he’s in there. It would be great to have it all done at once but would probably be a horrific recovery.

I’m sorry you have two major things to deal w/ & both in the same area of your body. I can imagine dealing w/ the pain is very challenging.

Hi kiZe6159,

Having both of these issuses is a tough one for sure, I am so sorry ughhh! I did not see any reference in this post as to if your neurosurgeon is aware of the ES as well or his/her thoughts about that piece?

It is very common to have surgery in the front of the neck (verses the back) to address your cervical piece and pain management is typically smooth for people after the usual post op pain from the incision and swelling recedes. One of the more common side effect is temporary mild loss of voice and/or swallowing difficulty as they will gently move your wind pipe and esophagus aside to reach your spine (you can move both to the side and feel the front of your spine with your fingers - it is quite superficial which is why this approach is preferred) Isn’t it so crazy how they speak so nonchalantly about “pushing things aside”… please people! but in their mind that is mechanically what happens, only ther really are much gentler :joy: But in fact, your long time neck pain should be much much better almost immediately. It would be good to pass the ES by your surgeon when you see him just so there are no big surprises for either of you (sorry if I missed something here)

I hope this is helpful. Keep hanging in there, you are not alone! Sending all good your way :purple_heart:

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Great info, JustBreathe. I learned something new from what you posted. Thank you for that!

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Hey there…good to be back to a place where I want to post and participate! Been frustrating to say the least. Went back to see my ENT (the one that diagnosed me finally after 8 or 10 years?) Took my laptop to show him the 3D dental paam with the “dots” showing up under the SP. The intent to get him to own up to the fact that even though my SPs aren’t overly long, I DO have ES! He wasn’t real interested in my show and tell and again advised against surgery for it and strongly pushed me toward the tried and true cervical spine surgery. He thinks I will get a lot of relief from that and I agree. I so hope lifting the cervical spine up a bit on the left side where the collapse is more severe that it will give me some SP relief where that thing feels like it’s digging into God knows what. Right side is a different situation with regard to the ES - poking an entirely different area…that one under the ear and behind the jaw. Trying to wait patiently for July 31st for my appt with my neuro surgeon so we can’t get the surgery scheduled! And yes, it’s a crying shame (literally) that he can’t do all of it while he is there. I have a suspicion that he may take a look at that SP while he is in there, though I am sure he won’t do anything with it. He certainly knows exactly where it is! Poked it on my first visit with him and about sent me through the roof. He is much more interested in it than my ENT and certainly much more compassionate toward my plight! Thanks bunches for your post - nice to be missed!

Hello JustBreathe,
Yes, my neuro is aware of the ES and is amazed that I am tolerating all of it so well. He always calls me a pleasant 60 year old female in his notes! I guess he doesn’t realize I am just on my best behavior when I am there - LOL!!!
The “moving” things to the side is of great concern for me because I know it will aggravate the ES. I already have something going on that feels like the ligament getting caught on something (hyoid?) every now and then. Then there is the osteoporosis issue! I’m taking a lot of plant based calcium and vitamin D (was severely deficient) to try and improve my bone density and gear up for the cervical surgery. Not likely it will improve much before the surgery, but at least I won’t be losing any! Just recently discovered all the medications I take suck my calcium!
Thank you so much for your kind words…been a regular on here since April of last year when I was finally diagnosed but my depression gets the best of me on occasion and I go dark. Just getting REALLY tired of battling.
I did meet a nice lady named Margret online recently. Her husband posted a great review on Dr. Milligan’s (Arizona) website. She says he was great…her SPs weren’t overly long either but she begged him to help her. He only did one side and did not take the SP all the way back to the base (not sure how I feel about this approach). She says she feels great, incision on her neck was really small and she is back to living life again…pretty much a couple weeks after surgery - WOW. She had a lot of my same symptoms - even removal of her lower molars!

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So sorry that you’re going through all of this- I guess the positives are that you have a compassionate & knowledgeable neurosurgeon, & a potential plan…you may find that shifting things helps the ES symptoms after the initial aggravation dies down. Would be amazing if he could address the ES at the same time though😕

Sorry to hear about the calcium snag. The information is so confusing, every shifting and changing - like the never ending recycle of the miniskirt :rofl: So glad to hear your NS is in the loop and hearing you in regards to the styloids…great news. I have observed this cervical surgery and the visualization is quite good at the front of the spine. Maybe gently remind him about it at your appointment July 31 so it is again in his brilliant brain, a pleasant (you have that down already) squeaky wheels go a LONG way. It is very realistic to think the cervical surgery will help with the other symptoms - as Jules said. Both of those surgeries at the same time is a very tall order so not surprised they would want to address them separately.

It is so hard, we just want to get better - yesterday…I completely understand. But maybe now you can settle into a different mode, lighten your grip on the battle wheel and prepare for what lays ahead. I am a big fan of breathing to help with that :blush:

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kiZe6159 ~
I’m sorry your ENT isn’t being supportive especially since he diagnosed you so has a clue about ES. Do you have any calcification on your stylohyoid ligaments or just elongation of your styloids?

I agree w/ JustBreathe that your ES symptoms may be stirred up a bit from surgery on your cervical spine, but the c-spine surgery seems like it will be very helpful toward alleviating a chunk of your symptoms. That is something to pray & hope for!!
I hope you’re able to fill your days w/ things you enjoy so the time till your neuro appointment seems to fly by.

:hugs:

Morning!
I’m pretty sure those dots under my SPs are calcification of my ligaments - both sides. I have no doubt my ES will be aggravated with the cervical surgery which is why I’ve been having a hard time with it all. Since I can’t get anyone that I trust to say the SPs are long enough for surgery via looking at the CT and MRI, that battle will have to wait for another time…running out of fight. I am so hoping my neuro surgeon will get a look at them while he is in there and see what the heck is happening. I am also going to call and get on a cancellation list - maybe I can get in sooner. Since my appt isn’t until July 31st and insurance takes their sweet time approving things, it will probably be into September before surgery. Wish me luck that I can get things rolling before that.

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Forgot to add the part about my ENT diagnosing me! It is a legit diagnoses. He actually manually palpated the right side (mass under my ear behind my jaw). He is aware of it but just doesn’t believe in surgery for it - maybe BECAUSE HE DOESN’T HAVE IT!!! He doesn’t think there is much benefit in doing it when weighed against the risk of the surgery. I don’t think I mentioned his comment on the calcification of the ligaments…he says yeah could be (after a quick glance) but lots of people develop ligament calcification as they age. Ok, I get it but mine are causing PROBLEMS!!! :roll_eyes:

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Yeah, somewhere in medical school ENT’s are taught that ligament calcification is a “normal variation”. It was said to me that the issue comes when you have symptoms due to them. So yeah, yours are symptomatic. Something has to be done to relieve your suffering. :pray:

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If they don’t believe surgery helps, then steer well clear! It’s because they don’t want to do the surgery IMO…lets hope that you do get a cancellation & the insurance gets sorted!

Hopefully your fight will return after your c-spine is taken care of. You’re in a tough spot where two things critical to your moving forward w/ your life are both demanding attention.

Good plan getting on the neurologist’s cancellation list! I will pray that pays off for you.

Well boys and girls, I have scheduled my cervical spine surgery. It will happen on October 17th and I am quite apprehensive about it. I am very concerned what will happen with the ES part of things when my surgeon goes in and pushes my windpipe and such over to the side and out of the way. What might be punctured by the SP??? How much worse is my recovery going to be? How will I be able to tell if it’s normal recovery pains or if something has gone wrong with the ES. I guess what will be will be and worrying about it isn’t going to help anything. I just know I have got to get some relief. Though the surgery I will be having isn’t for my ES, I believe it will be affected and I will post recovery notes for those of us who have cervical issues as well. :upside_down_face: