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Eagle Syndrome - Online Support Group

Happy New Year

I am wishing everyone who reads this a blessed 2020 and may you find health and peace. Big Hugs to everyone dealing with this crushing, painful disability. Thanks to everyone who tried to help me.

dharmadel

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We wish you the same too, praying that you’ll get answers & treatment for your infection & Eagles. Hoping you weren’t in too much pain to be able to enjoy Christmas with your family? Hugs to you…

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Thank you, Jules!

Happy New Year from me, too, dharmadel! I am also hoping & praying that 2020 will be a “new” year for you, too - a year of recovery & renewal.

:hugs:

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I am still having trouble using your website. My surgery is feb 5 and I would like to know what to expect. Dr says it’s only an hour outpatient but under general anesthesia. Kind of scared. Any wisdom for me out there

If you use the magnifying glass icon, top right of the page, & put in what to expect after surgery, it’ll come up with discussions so you’ll get some info. Is your surgery external or intraoral?
But briefly, you’ll need to sleep propped up after surgery to help with swelling, so a wedge pillow is a good idea. Lots of members find ice packs help too. You might not be able to open your mouth wide & chewing can be uncomfortable, so it’s a good idea to get soft foods in & stuff for smoothies.
The surgery is usually a bit longer than an hour, but having it done as an out patient is common in the US. Make sure you keep taking the painkillers you’re given regularly; if you wait until the pain gets bad it can take a while for them to work. They can be constipating so it’s a good idea to get something ready in case!
Doctors quite often underestimate how long recovery can be- you’ll need to take it easy for a couple of weeks, often longer than that. Turning your head can be uncomfortable, so driving might be difficult. ES symptoms may not go straight away; nerves can take a while to heal, so it can be months before some pain improves. And expect ups & downs, you may well have good days & bad days.
It’s a good idea to massage the scar once it’s healed with oil to help avoid scar tissue builld up - you can buy ones for that.
Hope that it goes well!

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I have been hearing a lot of problems people have had with their surgeries. Has anyone been successful?

Yes, lots! I felt loads better after mine! Unfortunately quite a few members don’t come back on after they’ve had a successful surgery, they don’t need support afterwards, whereas those whose surgery hasn’t gone well still need info & support, so they stay on the site. That can make the discussions skewed towards those not so good results; if you search for sucessful surgery, you’ll find some good stories.
Unfortunately there are some doctors doing surgery who don’t understand how important it is to remove the styloids back as far as possible, smooth off what’s left & remove any calcified ligaments, so to minimise the risks of surgery it’s best to see an experienced doctor, & to ask plenty of questions.

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Thank you. I do appreciate your response as I am more afraid now than when I first booked the surgery. I will ask dr about the things you mentioned. As you can see by my middle of the night posts I’m in too much pain to sleep. During the day I just take Advil and pretend to be functioning

Thank you. I do appreciate your response as I am more afraid now than when I first booked the surgery. I will ask dr about the things you mentioned. As you can see by my middle of the night posts I’m in too much pain to sleep. During the day I just take Advil and pretend to be functioning

Jules

    January 6

Yes, lots! I felt loads better after mine! Unfortunately quite a few members don’t come back on after they’ve had a successful surgery, they don’t need support afterwards, whereas those whose surgery hasn’t gone well still need info & support, so they stay on the site. That can make the discussions skewed towards those not so good results; if you search for sucessful surgery, you’ll find some good stories.

Unfortunately there are some doctors doing surgery who don’t understand how important it is to remove the styloids back as far as possible, smooth off what’s left & remove any calcified ligaments, so to minimise the risks of surgery it’s best to see an experienced doctor, & to ask plenty of questions.


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In Reply To

Jodi

    January 6

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Thank you. I do appreciate your response as I am more afraid now than when I first booked the surgery. I will ask dr about the things you mentioned. As you can see by my middle of the night posts I’m in too much pain to sleep. During the day I just take Advil and pretend to be functioning

Jules

    January 6

Yes, lots! I felt loads better after mine! Unfortunately quite a few members don’t come back on after they’ve had a successful surgery, they don’t need support afterwards, whereas those whose surgery hasn’t gone well still need info & support, so they stay on the site. That can make the discussions skewed towards those not so good results; if you search for sucessful surgery, you’ll find some good stories.

Unfortunately there are some doctors doing surgery who don’t understand how important it is to remove the styloids back as far as possible, smooth off what’s left & remove any calcified ligaments, so to minimise the risks of surgery it’s best to see an experienced doctor, & to ask plenty of questions.


Visit Topic eply to this email to respond.


In Reply To

Jodi

    January 6

I have beenunsubscribe from these emails, click here.

Hi Jodi,

I’m sorry you’re having such pain. We have other members who are also “in your boat”. As Jules mentioned, if you see an experienced ES surgeon it will make all the difference in the outcome of your surgery. I also had two successful ES surgeries (one for each side) & had my styloids removed to the skull base & stylohyoid ligaments removed at the hyoid bone. My surgeries were 5 years ago & have restored my health & my life. I have a very few “reminders” left from surgery but nothing that impacts my life the way ES did. I can live w/ the leftovers with no problem.

Happy new year
I had two surgeries one year apart so my recovery has been dragged out
I do believe it’s worth it as it helped a lot but I was one patient who was told there is nothing wrong so just go to physical therapy
I went 15 years without help but I found out from an oral surgeon I had eagle syndrome
I then went to Cleveland clinic and it is now almost 5 years and it is much better
The damage done to my nerves is rough but I believe as long as I keep moving and not letting it get me down I am better all the time
Just hang in there and make sure you have the right doctor

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Today I did find something to ease my pain a little. It’s going to sound crazy but I got a foot massage. The stretch your shoulders and back just a little but concentrated on the feet. While the pain only went away temporarily I was more relaxed after that I almost felt altered. Regular massage only irritates my neck. Another thing is I got an old fashion microwaveable bean bag neck wrap. It doesn’t ease the pain but it’s very soothing. Alas though it’s two thirty in the morning and the pain has awakened me.

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Thank you for saying this. It makes sense that people with successful outcomes might leave the forum.

I was thinking it is a bit similar to how people only tend to review items/services/restaurants/whatever when they have a bad experience, it is human nature.

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