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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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Hi ES gang!

Thought I would share an update for being 9+ weeks out from my first side external styloidectomy and venoplasty. Gratefully I have had zero complications of any kind. Of course I have the expected mild residual numbness from my jaw to the incision and platysma muscle tightness but otherwise no other issues from this surgery!

I am writing this to encourage those of you who may be on the fence. This is a terribly debilitating problem and it can be addressed. There is no doubt it has improved my quality of life and will continue to. Relieving the compression from the internal jugular vein and vagus nerve is imperative. Normal blood flow out of the brain is a GOOD thing and nerves don’t like to be touched.

If you are someone who knows there is something wrong and feel ES is the reason don’t stop looking until you find a surgeon who is skilled and understands. You know your body the best and you are your best advocate…be the “pleasant squeaky wheel”.

I hope to have the other side done in the next several months after a few things are addressed.

Thank you all for taking an active part of this forum and THANK YOU Wendy and Jules for being our angels! Be well and just breathe :grin:

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Love your update! Thank you for your great optimism & information (as always!). I’m so thankful your healing & recovery are going well. I hope you’re able to have that second surgery soon & end the ES issues once & for ever, JustBreathe!

Has the source of your CSF leak been discovered?

Thinking of you & sending a prayer heavenward!

:hugs:

Hi Isaiah!

The CSF leak is lower on the list as we hope it might resolve itself if I can get my intracranial hypertension to decrease with the second styloidectomy via improving venous drainage from my brain…hurry up and WAIT!!!

This is my personal eternal lesson in patience…where the word “patient” came from :crazy_face:

Hope your legs have recovered from the marathons…keep running for all of us! Thanks for your compassion and support always

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Thanks for your update! We hope that the 2nd surgery will resolve the CSF leak…thank you for all your knowledge & wisdom, you’ve given us lots of info, & been a big support for others! :+1:

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I was hoping you’d say that, JustBreathe, as it was on my mind i.e. that ES is the indirect cause of the CSF leak & getting rid of the final styloid might just be your ticket to a cure.

It is terribly hard to be patient when awaiting a “cure” for something that has been so debilitating. Hopefully Dr. H will get that next surgery on his calendar soon so you can fully be on the road to recovery.

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Well, no one is saying there is a “direct” cause from ES to CSF leak. The working hypothesis is there may be a relationship between stylogenic compression of the IJV and IIH. Down the line would be the possible connection to skullbase CSF leaking/healing. It is definitely a growing area of research right now. I am just grateful to have been given such incredible out of the box thinking doctors who are willing to push some boundaries and stretch their brains! It is still “practicing” medicine, always a work in progress. :blush: :crossed_fingers:

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