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Eagle Syndrome - Online Support Group

Anyone have success with a neurosurgeon

Hi guys I am praying for you all to have a great surgery and to be healed soon. Blessings

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Cali,

I’m praying you find the right doctor soon. It will be good to know how Ilovemaui’s surgery turns out. If she has good results, I think you’ve found your Kaiser doctor(s). There aren’t any good ones that we know of in the SF Bay Area. Not sure where you’re located.

Hi Isaiah,

Thanks for your message . I am actually in the same area Ilovemaui is. Praying for her and all of us. I have been officially diagnosed this past Tuesday after a scan and kaiser has not reached out to me yet. My symptoms are at its worst. Patience and faith
in the Lord

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Hi Cali,

Sometimes that’s all we can do is trust God’s plan & ask for His guidance. It would be worthwhile making an appointment w/ Ilovemaui’s doctor for a second opinion. He seems knowledgeable about ES.

Hi guys has anyone experience worst symptoms after surgery?

Sometimes surgery can flare up & upset the other side, so that can be worse afterwards. Also some members have felt worse initially after surgery, because of all the irritation to nerves & inflammation, plus the initial swelling can make things more painful, but this usually settles with time. It can take months for nerves to heal, even up to a year, so patience is needed.

Has anyone experienced speech problems after surgery?

Yes, several of us have. The glossopharyngeal nerve is one of the nerves that can be irritated both by ES & by surgery. SewMomma, gbr, some others I don’t currently remember & myself all had struggles w/ a partially paralyzed tongue for a few months post op. Full use gradually returned in every case, I believe.

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For me - two months was ALOT better and four months was undetectable. I then went and had the second side done so I’m still recovering from that but no more crooked tongue and no more difficulty pronouncing things!

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Glad to hear that. It is sure a long journey and it seems that we are all in the same boat. Praying for all of us and especially for those who are having surgery this week.

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Hi Lien,

Praying that your surgery went well and you are recovering well!

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Hi Lien,

You have also been on my mind. Please post an update when you feel up to it! I’m still praying for you!

:rose:

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Hi everyone
My surgery was on 27 aug and the surgery went well said the neurosurgeon.
Resection of the base from the styloideus processus on the right side. The N VII was stimulated from beginning to the end during the surgery. The part that was elongated and calcified has been broken off from the base but is 't out of throat. So the conflict and the tension at the height of perifere N VII should be gone. I can 't tell yet if it is. Surgeon said to have patience at least 4 weeks because of swollen throat and everything. My ear feels like it is not a part of me. Weird. Day 1 after surgery i had a attack (clusterheadache) and on the other days also typical shootingpains in my head, eye and ear. Though it seemes like the tension in my throat/neck is a little bit less. Neckpain and limited rotation. Can’t stick out my tongue or open my mouth all the way. Now i have to rest (oh my) and hope that the result will be good and a real release. Keep you all posted. On 18th of september i will see the surgeon again. Thanks you all for praying for and thinking about me.

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Hi Kay
How was your surgery?

Not sure if it’s a mis-type; did you say the styloid has been left in still, just broken off?

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Hi Lien,

So glad your surgery went well! It will take awhile for you to feel the difference from having your styloid removed. I’m guessing you meant that your stylohyoid ligament wasn’t removed but that your styloid process was.

Your tongue may take some time to heal - sometimes several months. You should start being able to open your mouth more by the second week after surgery. Much of the pain & symptoms you still have are from post op swelling. As that goes down, you should feel those symptoms go away. If you have bilateral ES, some symptoms might stay until you have the other side removed.

Patience and waiting are the name of the post op game w/ ES. Irritated nerves can take several months to a year to heal. Take care of yourself! Listen to your body & try to stay as quiet as possible for at least 2 weeks after surgery. By a month after surgery, you should notice some more significant improvement.

:rose:

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Hi Lien,

So glad to hear from you…I have been praying that your surgery went well! Take baby steps each day. I am finding that each day brings a new healing adventure. I have a little problem with my tongue and back of the throat but it is seems better each day. My numb jaw line seems to be waking up some…look at the gains you have made in the short time since our surgery date and hope for a pain free future! Enjoy your day!

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Hi Isaiah_40_31 and Jules
I’m sorry… sometimes i can’t express well in English. Yes that’s what i mean: my styloid processus is out but the calcified ligament has been broken off. The part that grows at/under the styloid proccesus. I’m now 2 weeks post op and every day is different. And we all here have stomach flu for the moment :confused:
I’ m curieus to discover all the differences in the coming next weeks. So like you tell: patience :smirk:

Stomach flu, nasty, hope that you all get over that soon! Thinking of you & will keep praying for you…

Hi Lien,

Sorry you have the stomach flu at your house…take care of yourself and hopefully it resolves quickly! I hope your recovery journey finds you with less symptoms each day and hope for a brighter pain and symptom free future! Each day of recovery is different, but I notice more improvement each day as I hope you do too!

Kay

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