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Eagle Syndrome - Online Support Group

Surgery scheduled 22 Aug

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

I think it’s the scm muscle but I get dizzy as I feel those bones are poking in that area. Bring in Thursday. Starts behind my ear. And longus colli muscle aches which makes me think it’s my throat but it is actually that muscle.

Isaiah helped me with this but I wanted to share if anyone else has this as a symptom.

Thank you for your kind words and support!

Brooklyn Girl I am so glad to know that you are feeling better. now. There will possibly be some set backs in the next few months, though, so do not panic, easier said than done. I had the mouth issue along with eyelid paralysis. Eye was wide open, I had to tape it shut. I was terrified even though the doctor said it would get better. The eyelid got better about week 5 , the mouth took almost 2 months. The biting of cheek is because the lower lip is still not healed. I was sent to therapy and the therapist said it is the longest nerve run from the site of the operation, but it comes. It seems to just get there naturally, but biting the cheek and lip are tough. I got some of those cotton rolls from my dentist and put them in my cheek and lower lip to eat. Gross, I know, but then I could chew without biting my lip and could toss it after eating. Anything that helps with the pain and inconvenience was okay with me.
SusieQ. That SCM muscle is a tough one. I am almost a year from the surgery on the left and because of my bad bite that muscle is always tight. The right side is dominant and it is healing and taking over the dominance now, so I have to massage the left a lot more. Since I have a bad( very badly misaligned jaw), that may be an issue for me in the future, but I still have a long way to go for both sides to be completely healed. I get headaches from that SCM muscle being tight, but I work on it. I think you will find for yourself that you will find it relax in a few weeks. The one on the right side felt like it just melted down and it was such a relief. Those are the muscles that are still not understood to be part of EAgles. I believe that is why I took so long going for surgery. I did not know that my neck and shoulder blade pain were largely due to Eagles. I have been in therapy for years and it is only now showing positive more permanent results. I will probably be in therapy for awhile since those muscles have been cramped for years.

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Thank thank thank you. Isaiah, you are a guardian angel. I believe whole heartedly the SCM and longus colli and the levator are all connected with this syndrome. I call the levator Darth Vader as he is a tough one too. It’s like you wear your shoulder as earrings. The information you provide is so helpful.
I am drinking apple cider vinegar with a little honey to help blood flow… man is that an acquired taste…no one has ever said.
Also one question for you to the group that has had surgery. I am worried when I come out of anesthesia I will vomit and mess up the whole neck. I had an ovary out in November and I refunded for a good 15 minutes…when I woke up then I was fine.
I’m worried about that…plus 90000000 other things but that’s a big one today.
Thank you for being such blessings to so many scared and hurting people. I really appreciate the time you all give to help others.

Hi there,

I threw up after coming out of anesthesia with a colonoscopy 10 years ago so as a precaution I got a nausea patch behind my ear for both surgeries. Took it off a day later at home and had no problems.

If you’re prone to that after anesthesia I would mention it to the anesthetist pre-op (in the UK you have a chat with them pre-op, don’t know if that happens in the US?) so that you can have an anti-emetic ready. The idea of vomiting after that surgery would make me worried too!