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Eagle Syndrome - Online Support Group

Bilateral - one out, one remaining - still causing problems?

Brooklyn girl

You are in my thoughts and prayers. You are a warrior and I am so proud you are pushing ahead to take care of yourself!!!
I am very grateful for you and the others on this site that helped me through my surgeries.
We are with you!!
Kick that bone to the curb girl!
Susan

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I complain and worry about pain, surgery, and the crazy symptoms, but I am blessed in so many ways and this site is way up there on the list.

Thank you SusieQ, Isaiah, Jules, Emma and SewMomma for the support, feedback and compassion. Happy Thanksgiving to all.
BG

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So true, there is so much to be thankful for; however, it is good to have a place to say you do not feel well and have people who understand what you mean. Happy Thanksgiving and Happy Being Thankful to you also!

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You do not complain! Don’t say that, you’ve been through lots yourself but you’re on here encouraging others & helping them with info, we need you :star2:

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I second everything Jules, DeeG, & SusieQ said, BrooklynGirl. You’ve been so helpful to so many of our members. We’re a team here, & we’re glad you’re a part of that team!

Happy Thanksgiving to you & whoever else reads this! :turkey: :blush:

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I am heading to my pre-surgery appointment today for surgery 12/9.

I re-read through this entire entry - its amazing what we can get through then forget!! It was a real tough ride to be sure. In one of the posts Isaiah posted a diagram of the vagus nerve in the body. Though on both sides of the body, it looks like most of the nerves pass through on the left side. Maybe that will mean less aggravation post surgery on the right side. (Please dear Lord)

After the first surgery I had major vagus nerve issues including heart rate and sleep dysfunction with arousal disturbance (I had difficulty exhaling and would wake up when falling asleep - it was a temporary central sleep apnea) I was in the doctors frequently post surgery with vitals checked every time. My normal heart rate is 58-61 beats per minute but for two months following my surgery it was 83-84 beats per minute. Fortunately it is back down to my normal rate.

On this recent flare-up I thought maybe my salivary glands were swollen but a trip to my GP Saturday said that nothing in my neck is swollen - the nerve related ES issues makes it feel swollen. The left side scar tissue is very tight and causes some/most of the same nerve issues I had pre-surgery. Sometimes the surgery side hurts more than the remaining styloid side.

I am still VERY reluctant to have the right side surgery and feel like I may back out. After my first surgery I felt like I had opened Pandora’s Box and was terrified from all of the angry nerve issues. Surgery or no surgery?? It is definitely a trade off. I know the pain I have now and can get through/function on most days - but what awaits me post surgery? I just cooked Thanksgiving for 10 people in lots of pain and discomfort, but I did it! (and all turned out well) My flare-ups have me in tears at times. I can function but it is a quality of life issue.

BG

I can totally understand you being wary of the second surgery after all that you went through first time! I thought long & hard about mine, & I had a relatively easy time with 1st surgery. What made up my mind was firstly that the nerve pain, numbness & tingling in my face were worsening on the side I had done first, & this improved after surgery; if I hadn’t had it done then it might have been damaged more & not repaired at all. I didn’t want this to happen with side 2. Also after 1st surgery the other side ramped up, not as bad, but it was there. I can’t remember if you’ve had vascular symptoms or not? I had bilateral jugular compression, so decided I wanted that styloid out & away from my blood vessel! The last thing for me was the fact that I could have surgery with an expert doctor; you never know if a doctor could stop practicing, & then it might be hard to find another one. Just a fe things to bear in mind…will be praying that you make the right decisions for you!

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Maybe age should be considered too - do you want 10 more years to go by then have to do it anyway? Not an easy decision though. You might find it’s only 51/49 one way meaning it’s not going to feel like 100% certain. That’s just the way it goes with decisions that involve risks. :heart:

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Hi BG -

This has been a rough road for you. I want to encourage you to take a “leap of faith” & get the remaining styloid removed. Jules & Sewmomma made good points - you can wait longer & risk losing a doctor you’ve come to respect & trust, but in the end, you’ll most likely need surgery to put ES to rest. My concern would be that with the amount of pain you have now, waiting will only allow the remaining styloid to do more damage. My second surgery ended up being unexpectedly easier than my first. I was able to eat solid food when I got home, my swelling was less, & my post op nerve issues were far less.

Good observation as far as the vagus nerve location goes. It is much more present on the left side than the right, & I totally agree w/ your reasoning that you are less likely to have post op vagus nerve problems this time around.

I think we forget things like labor & post op surgical pain/symptoms because we get on with our lives once we’ve passed through those waters. Our brains have no reason to dwell on a difficult past, so they move on with living in a happier present. I do acknowledge, however, that we can also learn from past experiences so as not to repeat “painful” mistakes. In your case, though, you may need to endure a little more pain to ultimately get rid of the BIGGER pain that is a more serious problem.

If you choose to wait a bit longer for surgery, there’s no problem with that. You need to be ready mentally to face surgery & the recovery challenge, but I do fear your symptoms will get worse with time. I didn’t suffer post op the way you did, so I know I’m under-appreciating how difficult this decision is for you.

I will be praying for you to have perfect clarity as to timing for the surgery & for you to feel at peace if this is the time to go for it.

:hugs: :heart:

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@Jules @SewMomma @Isaiah_40_31 Thank you to my Eagle family members for the encouragement and support. @SusieQ said to kick the bone to the curb and that is what I must do.

While at my pre-surgery appointment I got “the” phone call that I have been hoping for the past 5 weeks that will take my life on a new path and that now includes getting this out sooner than later. It felt like a sign from the heavens and I now feel at ease of what must be done.

I will spill more on whats happening when it safe to do so. :wink: But I can say that it is a very good “move.” Doing the surgery now will give me enough time to have the surgery and recover and “move” on.

I am looking forward to having this out and putting the ES journey behind me.
:pray:
BG

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Gosh, what a journey you are on. It is so hard not to fall back into the “ought too’s” of the past or slip into the “what if’s” of the future. We get lost there and it is a terrible place. My hope for you is to stay in the present. Sending you encouragement as you move forward and confidence in knowing you are exactly where you are meant to be. :purple_heart:

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Staying present is a skill that takes all one’s might, patience and faith, but that is my goal. Thank you for the encouragement.:green_heart:

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I had vascular issues on the side now removed. Every time I stood up my head felt like it would explode. Surgery relieved the symptoms as well as the local pain.

The right side is local throat and neck pain, with neck/shoulder tightness and right eye pain on top of my eye. I feel all of this connected to my ES when it flares up.Two months 3 times a week of PT did nothing to help the tightness.

Praise the Lord - sometimes we do get “signs”…isn’t that nice? And the fact that you got the news while at the appointment!

Can’t wait to hear the news! It’s time for that second styloid to “move” as well!!!

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I’m glad that you feel more at peace with your decision now! Can’t wait to hear your news! :+1:

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BG ~ :clap: :clap: :clap: God sure answered our prayers for you quickly & decisively! I’m so glad you have something wonderful to look forward to after surgery. I’m joining the other gals & will “wait w/ baited breath” to hear :ear:/read :eyes: your news. :grin:

:heart:

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@Isaiah_40_31 @Jules @SewMomma
It certainly felt like a sign and that my prayers were answered. Thank you to all for the prayers and support!

Sorry to be so cryptic but it is all good news. Lets just say that I’ve been in a toxic place for too many years and looking forward to putting it all behind me.:smiling_face_with_three_hearts:

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An emergency surgery has pushed my surgery back one day to 12/10. Its a bit nerve -racking but thankfully for me it is not an emergency.

me: “stay present and focused”

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I’m glad it’s only one day!

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Getting everything ready for Tuesday? At least you don’t have to drive this time!

Left foot, right foot - just gotta get yourself there then let the healing begin (again!).
:smiling_face_with_three_hearts:

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