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Eagle Syndrome - Online Support Group

Day 3 and all is well

Hello everyone!

Just thought I would give a shout out. Things are going well after a little OR equipment hiccup that pushed my surgery back a few days, just a little ground hog day action to spice things up :slight_smile: Turns out my styloid had grown so long it had adhered itself to the back side of my mandible. Every time i opened my mouth or turned my head it completely occluded my internal jugular vein - pretty crazy and explains a lot. Once the styloid was removed my pressure gradients returned to normal - yay!

I went home the next morning, second day was the worst for sore throat and mouth from the nerve monitoring. Having some trouble opening my mouth with TMJ swelling and ear pain related to the mandible attachment surprise but that should resolve as the swelling recedes. Still having some challenges with fluctuating intracranial pressure swings realted to the CSF leak but suspect that will take some time to balance out :crossed_fingers:…good blood drainage to and from the brain is a really good thing :rofl:

All in all I am pleased and happy to be on the other side of this wild ride. Hope everyone else in line this week are doing well. Sending encouragement and healing thoughts to all :sparkles: :purple_heart:

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Hi JustBreathe!

I’ve been praying for you & am SO GLAD! to read your good report! Yes & amen to healing taking time. Much patience is required, but you’ll be good as new before you know it! Will you need to have the other styloid removed later on? (Sorry I’ve forgotten). Hopefully this will also resolve the CSF leak cause so you NEVER have to go through that surgery & recovery again.

Lean hard on your caregivers & allow them to take care of you. Rest & Recover is the name of the game for you right now.

:heart:

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Hello! Isn’t it the best to come on here and write a post op message? Post op! You’re surgery is behind you!!! Listen to your body these next few weeks :+1::heart:

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Thank you for posting, have been praying & waiting to hear! Glad that it’s done, good job too with that nasty surprise! Hope the IH settles quickly & you feel the benefits…I had trouble opening my mouth after the 1st surgery, ladted about a week, helped with weight loss, always a bonus for me :joy:
Take it easy, & get lots of rest…:bouquet::pray:

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Just breathe!! Way to go!!! You and I are day 3 warriors together. You have been in my prayers. I’m so happy you posted.
Keep the messages flowing as you are able. Your story is an inspiration.

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Thanks for posting that you are over the hurdle of surgery and navigating down the middle of the river of healing. Wishing you a smooth ride! Sounds like your styloid really was a trouble maker and now is history!!! Prayers for a speedy recovery!

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Checking on you Kay. How are you feeling?

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Just breathe how are you today? Is tmj swelling improving?

Hi SusieQ!

Thanks for asking, I have been thinking of you as well and would love to hear how YOU are doing!!!

I made the trek home today (3 hour car ride) and am happy to say I did NOT need IV fluids this time! My nervous system is always wrecked by the vibration of the long drive but it I was more tolerant this time so that is a step in the right direction!

I have minimal swelling just below my jaw that stops above the incision, can now open my mouth fully with only right side TMJ stiffness and slight popping in my ear, the usual and expected muscle soreness in my neck and shoulders. Happy to have more food options beyond what is soft.

I am still icing every few hours and have not been on my feet much to keep things in check which seems to be paying off. I did take a .25 mile saunter along the river which is so good for my soul. Trying to keep the balance. My teenagers and husband are amazing, beyond grateful for their love and support (going on 5 years now with all of my shenanigans).

I am still dealing with an active CSF leak, my surgeon wants to wait 12 weeks before judgement is passed on whether it is able to heal itself now that the pressure is off of my brain from the severe jugular vein and vagus nerve compression. I really hope this happens as it’s location is in a very deep part of my sphenoid sinus and getting to it would be incredibly difficult with much higher risks. :crossed_fingers::crossed_fingers::crossed_fingers:

For anyone out there with sever jugular compression related to their styloid…I have found that sleeping with my head blocked from falling into rotation to either side has been extremely helpful! I needed an venoplasty using amniotic membrane and limiting this rotation while sleeping helps to protect that while it heals, and of course limiting my head turning while up as well…my mosh pit dancing will have to wait a while :smirk:

I hope this finds everyone else in recovery moving forward with great hope and expectations for a fabulous fall :maple_leaf::fallen_leaf::ear_of_rice:

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Awesome update. I will pray the CSF leak heals itself. Hopefully without the styloid in your body will do what it does best heal itself. It sounds like you have a beautiful family to support you through this. Please post when you can. It’s great to hear about your journey. You are a warrior! I am definitely ready for fall but it is 110 here today. I think we have one more month of this here in Phoenix and then the beautiful weather begins!

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How are you doing Kay? Love to hear when you are up for it!

You’ve been very supportive of the others going through this so it’s good to hear your update too! Glad you have a supportive family & were anle to go for a little walk! Hope that the drop in pressure helps your CSF leak to heal itself…:bouquet::pray:

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Thanks for asking! I am doing really well. I think there is a bit more swelling today. I feel kinda dizzy and weak but better since I took off the scopolamine patch they used during surgery to prevent nausea which is always and issue for me. I tried to tough it out on taking pain meds so learned not to do that because I feel a bit more pain today, but 1/2 a hydrocone and just plain tylenol have worked good for me as well as ice. I am thankful that I don’t have any droopy mouth or tongue issues. Praying for all my Eagle friends as they recover!

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Kay, I have visions of you kayaking … right down the center of the river laughing your head off!!!

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Thank you for the update, Kay! Sounds like you’re doing pretty well so soon after surgery. Days 3-6 are when you’ll experience the worst post op pain & swelling so keep that ice & those pain meds coming on schedule until after days 5 or 6. By next week, you’ll hopefully begin to see some good signs of recovery beginning.

:hugs:

Yes, JustBreathe, I was chilling and laughing and having a great time…I guess that was why I was so upset they woke me up. How is your recovery going? Praying for noticeable improvement for you!

Hi SusieQ!
I am feeling better than I expected I would…I have a sore throat and the usual incisional and neck swelling but it isn’t too bad. It is hard for me to just take it easy but I am trying to listen to my body. I am thankful that I did not have any mouth nerve issues so playing my clarinet should go ok when I feel up to trying. Hopefully I can play my alto sax too that I have not been able to play because of that nasty styloid! How are you feeling? Praying that each day eases your swelling and pain!

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10 days and all is well…

I am grateful to say my post op experience has been quite smooth … so far:
-No nerve pain or otherwise (tongue and face working normally)
-Minimal swelling (however I have slept at 30 degrees for 4 years to manage POTS now so that was not a huge challenge for me to get used to)
-The lump in my throat that has been there for 10+ years is only noticeable if I think about it and minimal at that
-My head feels a bit less heavy
-Incision is healing very well
-The constant burning pain in my legs from the last 5 years is a little bit less

My daily dose:
-icing every 4 hours, resting quietly
-Advil 600mg every 6 hours (3x day)

  • breathing…regularly :joy:

My vagal tone is still in the toilet and my CNS has a long road to recover but I am beyond grateful for this day, all of you, my hero surgeon who found this craziness (I had never heard of it) and our most loving God and much …much …more.

Hope everyone has a lovely and safe holiday, praying for you all always

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Yay Kay! I hear you. When they tried to wake me I distinctly heard my inner child of about 3 yell NO…it is nice and quiet in here! Too funny. Here’s to keeping the boat floating peacefully down the center of the quiet river and when the rapids come pointing the nose straight down the tongue :stuck_out_tongue_closed_eyes:

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Very good news that you’re healing well & seeing improvements already! Keep taking it easy, & will keep praying, gentle hugs…

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