LisaT has joined the site, & posted below:
Hi my name is Lisa I was diagnosed what is Eagle syndrome in February I knew something was wrong when I have my teeth removed but it took many years for them to figure it out about 5 years it goes from my throat into my tongue it wraps around my ears and pulls down on my face excruciating pain you tell the doctors they look at you like you’re stupid they’ve never heard of it for for before I literally had to throw a temper tantrum before anybody would recognize anything I come from Des Moines Iowa nobody knows anything about this and never heard about it and our lives I’m also a recovering drug addict so it makes it more difficult for me to get anything for the pain because I am a recovering drug addict but I’m also human I’m not asking them anything for a narcotic I’m asking them to help me relieve the pain nobody can understand this because they’re not going through and I’m going through and I’m not able to relate to anybody because nobody knows what it’s like so that’s why I’m reaching out and I hope somebody understand so that’s why I hooked up with you guys thanks and have a blessed day sincerely Lisa
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Hi Lisa,
You’ve posted this as a reply to my private message, so it’s not on the main forum. Did you want this to be posted as a discussion for everyone to see? (To start a new discussion, on the home page there’s a +new topic tab, you click on that, then do a title & the post you want, then click on the create tab at the bottom) I can make this a public post if you like though to save you typing it again?
I’m sorry that you’re having such a hard time with ES symptoms and the pain. There are some medications which can help other than opiods, like nerve pain ones, they’re not addictive. There’s info about that in the Newbies Guide section, maybe if you specifically ask for one of those a doctor would be more helpful? Otherwise lidocaine patches have helped some members, maybe that’s something you could try? Otherwise some members have had injections of lidocaine/& or steroids into the area which can help, you might be able to have that done to tide you over until you can find a surgeon?
Looking at the latest doctors list in the Doctors Info Section, there is one doctor in
Iowa; Dr Douglas van Dele, an ENT in University of Iowa hospitals and clinics, Iowa City. I think one member had surgery with him in the last couple of years. Otherwise Otolaryngologists/ skull base surgeons are a good bet to try as they operate in the area of the styloids.
I hope that you’re able to get pain relief soon,
Best wishes, Jules
Yes could you please make this public I would greatly appreciate it thank you so much for your kindness and God bless you because this Eagle syndrome is no joke and nobody knows what it’s like and I’m glad that I’m hooking up with people who know what I’m going through because I feel alone God bless you Jules and thank you very much
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On Tue, Apr 30, 2019, 1:29 AM Jules via Eagle Syndrome - Online Support Group ben_eagle@discoursemail.com wrote:
April 30Hi Lisa,
You’ve posted this as a reply to my private message, so it’s not on the main forum. Did you want this to be posted as a discussion for everyone to see? (To start a new discussion, on the home page there’s a +new topic tab, you click on that, then do a title & the post you want, then click on the create tab at the bottom) I can make this a public post if you like though to save you typing it again?
I’m sorry that you’re having such a hard time with ES symptoms and the pain. There are some medications which can help other than opiods, like nerve pain ones, they’re not addictive. There’s info about that in the Newbies Guide section, maybe if you specifically ask for one of those a doctor would be more helpful? Otherwise lidocaine patches have helped some members, maybe that’s something you could try? Otherwise some members have had injections of lidocaine/& or steroids into the area which can help, you might be able to have that done to tide you over until you can find a surgeon?
Looking at the latest doctors list in the Doctors Info Section, there is one doctor in
Iowa; Dr Douglas van Dele, an ENT in University of Iowa hospitals and clinics, Iowa City. I think one member had surgery with him in the last couple of years. Otherwise Otolaryngologists/ skull base surgeons are a good bet to try as they operate in the area of the styloids.
I hope that you’re able to get pain relief soon,
Best wishes, Jules
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In Reply To
April 30Hi my name is Lisa I was diagnosed what is Eagle syndrome in February I knew something was wrong when I have my teeth removed but it took many years for them to figure it out about 5 years it goes from my throat into my tongue it wraps around my ears and pulls down on my face excruciating pain you t…
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Hi LisaT -
So glad you found this wonderful forum! We’re all here for you & hope we can give you the support you need. We’ve all either been down the ES road or are traveling it now so can fully appreciate how you’re feeling.
Jules has given you some great advice. Try to get an appointment w/ the doctor she mentioned ASAP. Hopefully he will be supportive & willing to do the surgery you need to recover from ES.
I’ll be praying for you as you work at your rehab & that you will find the best possible doctor to help you now.