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Eagle Syndrome - Online Support Group

Surgery scheduled 22 Aug

Hey there,

You’re doing great. Just cross off the days until surgery. We all have wild imaginations as the date approaches. I was convinced I was going to get the flu, crash on the way to the surgery and my surgeon was going to oversleep.

Tell anxiety your dance card is full and you are not interested. It’s a toxic relationship. Start to date hope and trust :sparkling_heart:. They will treat you right.

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My favorite is that you wrote your surgeon would over sleep! That is too funny. I asked my doctor if he could please just relax over the next 13 days… I dreamed he cut my styloid and then made me a necklace with a leather band and gave it to me in the recovery room. People kept asking me if it was a sharks tooth. It was very strange. The one think I know in my heart as I cannot continue with this pain. I do believe God brought me to Dr. Milligan and to this website as it feels like guardian angels.
Thanks for listening. By the way this wedge pillow is very very firm. Everyone can sleep on this upright? It feels like the cousin of concrete…

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@SusieQ
Everything you have said is completely normal…up until the “flock of seagulls” - awesome visual!!! Your “flock” will shepherd you well, no doubt to another lovely chorus of an 80’s song by a great band :rofl: (dating myself here). Hang in there, just keep singing or humming your way to your date…and breathe - nice and slow. The relationship you already have with yourself is beautiful… just BTW :purple_heart:

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We are definitely in the same age group. Flock of seagulls and the hair!!

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Yep, I’ll join you- their LP (?remember those?!) is still upstairs…I’ll just day about the wedge pillow I added a couple more pillows to my wedge pillow to make it more comfy. I liked the v shaped orthopaedic pillows too, I found they seem more gentle on the sides of my neck.
As for the anxiety, that’s totally normal…I found it was easier when I felt rough leading up to surgery, as I knew I was making the right choice to have it, & felt I probably couldn’t feel much worse afterwards, lol! Lots of prayer time, focused on the promises in the psalms, listening to music as a distraction etc. got me through.
I’ll be praying for peace for you as you count down the days- & hope the time passes quickly!

Hi Susie,
My surgery is also scheduled for August 22nd. I am having both sides done, externally. I will have my neurosurgeon along with a head & neck surgeon . My only symptoms are trouble swallowing and dizziness when I turn my head a certain way. They will also have to shave off a little of my jaw bone. I am looking forward to getting it over with and healing. My Dr. has a very positive attitude which in turn is giving me a positive attitude. I think it is the only way to face a surgery like this. Good luck to us both :crossed_fingers::+1::blush:

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I love Maui too. If you live there i am extremely jealous!!! Wow surgery together! Let’s both post so we can cheer each other on post OP.
I would have loved to do both sides but my doctor only does one side at a time. I really like my doctor too.
You sound like you have a great team watching out for you! Did you find out you had ES quickly? It took me almost 18 months give or take.
I am trying to use the wedge pillow to see if I can get used to it.
I went for a massage today and I am meditating and praying to stay centered.
I am really grateful for the people on this website and the encouragement. I wish I could outsource this surgery but alas this isnt something you can outsource. I visualize being with my family and not feeling in pain and dizzy. And getting back to zumba by valentine’s day 2020. I will still need to do the other side in October so I’m giving myself some time. I did buy my husband eric Clapton tickets on sept 13th for his birthday so I am praying I will be able to attend and not look like a Dateline episode. It will be 3 weeks after our surgeries so hopefully this will be doable. Best to you Maui!
Susie Q

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Hi SusieQ & ILMaui!

You’ll both do great after your surgeries. SusieQ - you should be fine to go to a concert 3 weeks post op. Your incision will still be fairly obvious, but if you’re feeling self conscious, you can wear a neck scarf or a bandaid/bandage of some sort. I think your surgeon makes the smallest incision necessary to accomplish his task so there shouldn’t be any grossly disfiguring thing on your neck to be appalled by. :+1: It will take up to a year post op for you to achieve full nerve & vascular recovery. Please keep that in mind so you don’t get discouraged as the months of post op healing mount up.

ILMaui - Your recovery is going to take a bit longer. Don’t stress over that, just be prepared to be patient w/ your body & not anxious about the coming & going & coming again of your symptoms. Some seem to want to hang around for awhile post op. It will take up to a year post op for you to achieve full nerve & vascular recovery. Please keep that in mind so you don’t get discouraged as the months of post op healing mount up.

Another forum member, Kay, is also having surgery on 8/22. You’ll be a threesome! :yum:

:pray: :rose:

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You might find one of those airline style travel pillows comfy, but find one with microbead filling instead of memory foam. I find that memory foam has too much resistance and the nerves do not need all that pushback. I believe you can find one at Walmart for about 10 or 15.00 I find that pillow behind my head and the wedge to sleep up make a good combo. At first, I slept straight up with the wedge sitting straight up then was able to move it into the lying position, but everyone has different pressure points, mine was at the base of my skull in back. I will be praying for you both.

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I will be praying for all 3 of you.

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Hi-my surgery is on the 27th. I believe there are 5 of us in the next few weeks that will be ridding ourselves of that evil bone that has been the trouble maker. Getting used to my wedge pillow-I actually sleep pretty well with it with one pillow. May try adding a travel pillow too…might as well spice things up some! Praying for peace and positive joyful days as we approach our surgical dates!

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Kay I will keep you in my prayers too. What city are you in? I am in Phoenix. It is 115 degrees today… I will try to post as soon as possible so that you know it’s all great. I have my post OP one week later.

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Thank you for the correction, Kay. Obviously I accidentally put your surgery on the wrong day on my calendar. I’ll fix that now. :yum:

Thanks! Need all the prayers I can get!

@Kay, @SusieQ, @Ilovemaui2000

I will keep you all in my prayers.

I am now almost 9 weeks post op and I can really see that getting the left one out was the right thing to do and now I look forward to having the right side removed.

I think I expected to sail through, but I can say that two months was my turning point to feeling normal. Some of us here on this site had it much easier , some more difficulty - every body is different. It was a bit rough at times but I got through it and you will too!! I still have some residual numbness and nerve pain that seems to ease up every day. Still, for me it was all worth it!

Be patient and kind to yourselves. Take it easy. Understand that setbacks are normal. Use ice packs (with them all I needed was Tylenol.) This journey takes time but you are on your way. Don’t forget to reach out to this site for emotional needs and support. We are here for you!

All the best. Sending prayers and hugs.
BG

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BG

Thank you for sharing this information and that this is a process… when will you have the next surgery? I am having wicked vertigo when I lay down and then try to get up. I hope the surgery fixes that too.
Question for the group…
I know it says this syndrome is rare but I wonder if it is really as rare as they say. It seems rare more because physicians are unaware of this and most people have taken many arduous steps to advocate for their health.
To find the right doctors. It makes me wonder how many more people have ES but have been given bad information or misdiagnosis because the physicians are just unaware. Could lead to many people suffering for many years or never finding out that there is a fixable solution.
BG the fact you are saying you look forward to the right one being removed says it all!
Sounds like wedgies…ice and later mederma are the sexy things to look forward to. Also do you use a straw after surgery? Or u can drink normally?
Happy friday!

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It could very well be a misdiagnosed/misunderstood condition. I say, how could a 2-1/2 inch + size “stick” that doesn’t belong, poking in your already tightly packed neck not cause problems?!

I will most likely have the surgery January or February, 6 to 7 months after the first. I need to recoup some sick time, otherwise I would consider doing it sooner. (If you asked me a month ago I would have said maybe never, but time does heal.)

My left lower lip was completely numb and it didn’t move with my mouth when talking or smiling, making my mouth look crooked when I smiled. Without a straw, liquids would spill down my chin. Right after surgery I thought my smile would stay that way and it worried me. Thankfully it is almost back to normal - it is not noticeable but I still bite the inside of my lip occasionally and I no longer need a straw.

I hope the vertigo passes. I still get pounding in my head when standing but that is also passing. For me I think it was the pressure in my ears.

All the best SusieQ!
BG

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I totally agree that it would seem ES is not as rare as thought, just undiagnosed. I can’t remember the figures for how many have elongated styloids but were supposedly asymptomatic, haha they probably have the symptoms that we know are ES but doctors don’t recognise!

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I get this swelling on both sides