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Eagle Syndrome - Online Support Group

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

Isaiah,
I am so very grateful for your input, encouragement and kindness. Thank you for sharing your story. I will think of your words when progress seems discouraging and when I see small positive steps.
Best,
BG

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Slow and steady wins the race. That’s the only option in this recovery apparently :woozy_face:

Good job, BrooklynGirl! You WILL get through this. It’s a rocky road but gives way to a smooth path eventually.

:blush:

Hi, @BrooklynGirl. I just wanted to share the photo of my lump just above my incision taken about 3 weeks after surgery. My surgeon recommended that I take some aloe or vitamin E oil and massage from my jawline downward to the incision, then push the fluid around the incision and down. He said that the lymph passageways are cut during surgery, causing a “road block” and will grow back by about 6 weeks (they did). I only had to do the “massage” a few times and it was better. Is this what your incision area looks like? Hang in there💜

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I can’t remember exactly what vascular issues you had, which vessels were affected, but although the pressure of the styloid one side has been removed, it can still take time for the vessel to spring back if it’s been compressed for a while. Plus add in the effects of the other side… I did feel the benefits of surgery quite early on & the really scary vascular symptoms went within a week, but I was still left with some. I had a drain put in, so ended up with very little swelling, so bear in mind different surgical techniques can leave you with more than that, so it will take longer for issues to subside.
Hang on on to those symptoms which have gone & try to keep the hope that others have been through this & come out the other end- not perfect, but much improved…:gift_heart::bouquet::rainbow:

WOW, redbird773! You did have some major localized swelling! Funny thing - mine went up & I had a half-sided double chin for a few weeks but little swelling around my incision. It looked very odd. So glad you’ve come so far in your recovery.

Thank you for sharing your picture. This post will be helpful for BG.

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Everyone hang in there. This is a tortoise win, slow. Today I am 4 months out of the surgery on the right side and 10 months on the left side.
I expect that most of you will be great by then.
I am about over my mouth issues and definitely over the eyelid paralysis and then some. My eye pressures are down. I no longer have a floppy eyelid diagnosed 2 years ago Yes, Eagles caused that.
My left side may have some ongoing issues of trigeminal neuralgia, but that is the side with the worst jaw problems. I will address that later.
My face gets tired in the evening. My shoulders are weak from years of neck muscle tightness. I can use them without so much pain . I was able to sew at a machine for the first time in 8 years.
Those lymph node drainage techniques are the same areas that I massage. I may be too aggressive, but I feel better after and I believe I am getting better over time. Now I am not counting the days or weeks. I am human again.
I am not always thrilled with the tightness and ups and downs, but the eyes and shoulders and neck are working. I wish that I did not need a bite guard, but I can sleep lying down, sleep longer and

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Thank you Emma - so well said!

Having worked with many different types of people in physical, mental and emotional pain for 25 years, it trends that the longer one has been in pain and is suddenly given “the answer” the harder it is on the back end of surgery. Nothing wrong with that - we all just want to get better (and NOW would be great) as is the case for many of us with ES of any variety.The long wondering, waiting and trying to just live takes it’s toll and the mapping in our brains change giving more physical space in our brain to focus on the “pain”. Here is the GOOD news…our brains have an incredible plasticity and can change back, refocus and unlearn old habits…super cool!!! (If anyone is interested in the latest neuroscience behind pain check out Dr. Adriaan Louw and David Butler - super fascinating cutting edge work with lots of patient resources)

So here I am - in this crazy mess with all of you :crazy_face: and reading posts from everyone is so helpful. In a short bit I too will have to take my own medicine so to speak; how many times have I told people that “surgery is just another injury that you have to recover from”. Our bodies have a staggering ability to heal, and they will if we give them the time and space asked for. Talking about our experiences is so very helpful and the guidance by our moderators is priceless thank you Jules and Wendy!

Please feel free to remind me of all this come mid August…always easier said than done when you are in the thick of it :slight_smile: And as much as I wish none of us were in this place it has been a HUGE blessing to meet so many amazing people. Okay my blah blah blah is over, thanks to anyone who made it to the end :purple_heart:

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The elasticity of the brain comes up in education a lot. :+1: I am getting my brain back for SURE.

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Hi Emma!

I’m SO EXCITED to read about your progress here! SO AMAZING how far you’ve come & after such a long time of suffering! God is certainly answering our prayers!!

I continue to hope your trigeminal neuralgia will also take a hike or at least reduce w/o you having to do anything more than facial massage or maybe some myo or fascial therapy.

Your post totally made my day a happier place!

:sunflower: :relaxed:

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JustBreathe -

We will be here for you after your surgery just as you have been for so many others during your time on this forum. August 19th is just around the corner!

:hugs:

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I have been “offline” recently dealing with more labored breathing issues. Fun! I went to the emergency clinic Saturday where I was able to get a chest x-ray. The clinic called me Sunday morning to say that I have fluid in the lining of my lungs. Not bad enough to go the emergency room but to follow up with a pulmonolgist. I called my PCP who called me back within the hour!! He said that he wanted me to repeat the x-ray. I did that today and now waiting for the results to be sent to his office.

@redbird773 Thank you for sharing a photo of your lump. I am still a bit swollen but it is not a visibly noticeable as this. I have been doing gentle massages and the lymphatic massages as recommended by @JustBreathe.

@emma This is a very slooooow process. Going into surgery we all understand that its a big deal, but until we are post-op do we really understand how bid a deal it really is.

@sjlash Thinking of you. I hope you are now home and resting comfortably.

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That sounds worrying! Let us know how you get on…hope the results are better…

BG - I totally agree w/ Jules. Hoping for improvement in the lung area! Please let us know what you find out. I’m praying!

:hugs:

Did your primary get back to you? Thinking of you. You’re managing to work during all this too? How is your mental health? How is your appetite? :purple_heart:

@jules @Isaiah_40_31 @SewMomma

You guys are the best cheer leading squad ever! :blush:

My labored breathing is not dire but it has slowed me down and now the snail is winning the race. I can walk to the subway a block away from my house and then a block to my office. I get out of breath as if I was running instead of walking. I am taking it very easy - work and nothing else. If I miss work at this point I won’t get paid so staying home is not an option. I am doing alright emotionally. Maybe lack of O2 and energy is the ticket to staying calm. My appetite is a bit lacking but I am eating.

The xray report did not make it to my doc’s hands because his fax was down yesterday. (I cant believe that people still fax!) I left a patient portal message today but he has not gotten back to me. With everything that is going on I think taking the long road on this journey helps me to look at the big picture.

Thanks my fellow Eaglets.
I will keep you posted.
BG

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Goes to show you - you don’t know what people are going through. I bet you looked like an ordinary person on the subway this morning having an average day.

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praying for you to quickly regain your respiratory strength.

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Thank you for the update, BG! So hoping the fluid is of no consequence & quickly reabsorbs on its own.

You have been through a tremendous amount physically & emotionally over the last many months so have much from which to recover. I’m glad you’re being introspective and just doing what you can & not stressing about what you can’t/aren’t able to do at the moment. One step at a time. One day at a time. A snail’s pace is still a good pace. It gets the snail where it wants to go.

I agree on your note about faxing. That’s pretty “old school” at this point! It should have been emailed. Hopefully you’ll hear something by tomorrow.

Sending prayers for you to our loving God as I type.

:rose:

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Thinking of you and sending :sparkles:all good :sparkles:

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