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Eagle Syndrome - Online Support Group

Day 3 and all is well

JustBreathe -

I’m so glad you’re continuing to breathe regularly! Guess we wouldn’t be hearing from you if you weren’t. :grimacing:

I’m also very happy to read about the positive changes you’re seeing. Baby steps forward are still steps in the right direction. When all is said & done, I hope your list of remaining symptoms disappears entirely!

Praying for you still. :hugs:

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Glad that you are noticing some improvement and you are not that far post-op! May your day be peaceful and lovely as you enjoy your Sunday. Thanks for all the encouragement you provide to all of us…you are an inspiration!

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Hi everyone!

Just had my 4 week post op visit and as far as the ES surgery everything is going great:

-no motor nerve damage or pain (just numbness under my jaw line to the top of incision which is normal and should improve over time)
-no swelling, incision is healing well
-increased appetite, i gained a pound…YAY!!! This is in relation to taking the pressure off of the vagus nerve
-decreased sound and light sensitivities
-more time out of bed…hurrah!

No question opening up my IJV (which was 100% occluded by the styloid with chewing, opening my mouth and turning my head) and taking the severe compression off of the vagus and glossophryngeal nerve was a wonderful thing and in time my brain will be (and already is) much happier.

My story continues with the added complications of a CSF leak and major hit to my adrenals/autonomic nervous system so a slew of other tests are up and coming. I will have a provocative ultrasound on the other side immediately followed by a scalene block to see if that styloid needs to be addressed. ES was a big piece of my puzzle and I am beyond grateful to have had this surgery! I am also very grateful for finding all of you wonderful humans. Thank you for sharing your stories, loving and suffering along with me. Be well :purple_heart::hugs:

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That’s great news! So pleased that at least one piece of your puzzle has been sorted; I hope that the other tests show what else is going on.
You’ve been a great source of info & support for others on here!
Will keep you in my prayers, & keep on healing from your surgery! Let us know how you’re other tests go!

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Sounds like some very positive news and a plan to evaluate residual issues. You must have a gem of a physician to be managing all of your issues and systematically coming up with an evaluation plan! I continue to pray for improvement each day and answers to unanswered questions with your future testing. You are a true trooper in all of this and we appreciate all your kind suggestions and encouraging posts for others. Have a blessed Day!

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@JustBreathe Its wonderful to hear that you are healing well from your surgery. More for you do get through but you are a proven fighter and will get there!
All the best,
BG

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JustBreathe!

Your update makes my heart happy! I’m so glad you’ve seen good results from the ES surgery. I, too, hope your future tests give definitive results so you can continue moving forward w/ getting your life back & returning to your once vibrant self.

I know you’ve read this before, but the second styloid, if elongated, can become more symptomatic after the first is removed. Perhaps some of what you have left over is coming from there. Was the hit to your adrenals/autonomic nervous system a result of the ES surgery or is the cause a mystery? Sounds like you have a protocol in order to begin resolving that issue. Where does CSF leak repair fall in the order of things?

So hoping everything goes smoothly. I’m praying for that.

:sunflower: :relaxed:

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Thanks Isaiah!

My surgeon thinks the hit to my adrenals and ANS is from the prolonged and severe vagus nerve compression thus having the styloid removed should help but nerves can take a loooong time to heal.

It is so fascinating to me to be able to now, in hindsight, recognise the mechanical restriction from the styloid butting up against the C1 tubercle. It is something I have had worked on with PT over the years but only had temporary improvement and never seemed to truly resolve…here is the “ah ha” moment. No chance any amount of joint manipulation would solve that and to be honest I backed off because it always resulted in a headache…oh the lessons we have to learn :neutral_face:

Now with the right styloid removed I can feel the normal motion at C1 there…which is highlighting the restricted C1 motion of remaining left side - of course! So yes, I agree the remaining styloid that is now without it’s sister is talking, only for me it is not “pain” but joint stiffness and muscular responsive tightness - and any other related nerve/IJV compression complications.

My search for the CSF leak continues, more testing next week. It is just another piece of the very complicated puzzle. CSF leaks can be very hard to identify, in the spine or the skullbase. It is a fluid and ever changing system and our bodies can heal and then spring a leak again, the ultimate hunt of finding a needle in a haystack. The good news is i can now readily identify when it is happening and not jump down the rabbit hole to chase some other mysterious neurological disease.

It will all unfold in time, I trust I am where I am meant to be. Just have to hold on in the mean time and … just breathe :stuck_out_tongue_winking_eye::purple_heart:

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