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Eagle Syndrome - Online Support Group

Colorado Doctor?

The ENT who diagnosed me here in Colorado was hesitant because 1) Eagle Syndrome ‘is so rare’ and 2) my styloids weren’t extremely elongated just 3.5 and 3.3 whereas he thought if they were, for example, 4.5 he could be really sure.
it showed up on scans, the radiologist noted it could be He can feel it with his fingers at the back of my mouth so he took that more seriously too.

When he looked at my temporal bone scan to diagnose, he had to pull out his phone and look at Wikipedia to see how to diagnose it. Yeah.
He knows what surgery to do, into my neck, cut the styloid down but guys I feel like I should talk to someone who really KNOWS about Eagle Syndrome, not someone who had to look it up on Wikipedia. If someone’s going to slice into my neck I’d like an experienced doctor.
Does anyone know a doctor in Colorado who’s familiar with Eagle’s Syndrome and has done the surgery?

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There are 2 others from CO who are fairly new on the forum who both have CO surgeons lined up to do their ES surgeries. I don’t know if they are both seeing the same doctor though. You can try privately messaging MountainDweller &/or jmecker to discuss this.

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So basically you’re an expert lol, thank you for the names, I just messaged them. :slight_smile:

I messaged you. Dr. Hepworth is amazing! He caught it and I had no idea it was there. I chalked all my symptoms up to the CSF leak. Good luck!

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I saw your message thank you!!! You and another member in Colorado see the same doctor which is awesome!

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Oh my gosh, I didn’t know that another person on here saw him. Who is it?

You can have complete confidence in him. He’s top notch!!

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Hi gamerchic,

I’m a moderator on here so I try to keep track of the comings & goings of our forum members. You never know how one person’s experience or doctor reference might be perfect for someone new coming onto the forum. :face_with_monocle:

So glad to read the posts following yours. Sounds like there’s a wonderful doctor in CO that we could add to our list if he’s willing & if you all are happy w/ your surgical outcomes.

:blush:

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Yes, I made an appointment to see him in May and I’ll definitely post after I meet him.

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AWESOME! Glad you’ve got your foot in the door!!

Great! I’m looking forward to the update. He is one of a kind.

Gamerchic,

Hi! Just wondering how things turned out for you? Hope you are doing well :sunflower:

Hi there,
I had to move the appt to June so I’m seeing him next week. I’m hoping for a good interaction, thanks so much for checking in!:grin:

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Hi,
I saw Dr. Hepworth today and he’s amazing! Very unique and incredibly intelligent. I’m a bit overwhelmed as I had more wrong with me than I realized but it’s better to know. So happy I found out about him.

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gamerchic ~

So glad you had a good appointment. Also glad things unknown to you were spotted! Much better to get everything taken care of than to have to keep going back for “patch ups” later.

Please keep us updated as your care w/ Dr. Hepworth progresses.

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Glad that the appt. was helpful, if not quite what you thought…hope you’re able to get treatment soon.

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Good morning! So happy to hear your appointment went well. I am not surprised, he is an anomoly in medicine today. It is never easy to hear more than you were expecting (been there myself) but rest assured you are in the best of hands. His network extends to all specialties (I have seen most of them so far) and they have all been spectacular. It helps so much when you don’t have to “convince” a new doctor about your problem which is very real :smirk: Know that you are not alone. Keep holding on, sending you all good!!

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Hi Gamerchic,

I’m glad you liked him. He’s very good at putting things together and understandably this can be overwhelming at first. Please know that he is aware of these extra problems because he’s familiar with them and that’s what makes him a great doctor,

Have a good day!

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I think I was more taken aback at the realization that if I hadn’t pursued a side note on an image I wouldn’t known anything was wrong at all.
According to Dr. Hepworth not only are my styloids much longer than the radiologist measured but I have a completely separate issue of my jugular veins being reduced on both sides by 2/3. He thinks that’s why I’ve been losing my hearing, having ringing in my ears and experiencing a carotid headache that I couldn’t get rid of for years.
He’s sending me to a couple of places to have my jugular looked at, my intracranial pressure checked and an MRV too. I wasn’t expecting any of that.

Gamerchic,

Thank God you had the insight to chase the side note! That is quite a list … but the good news is you have a definitive plan with Dr. H at the helm to direct and follow up on it all. That takes a great burden off of your shoulders. His neuro and vascular connections are excellent and completely in the loop. Breathe it in slowly one step at a time and all will fall into place. Hopefully this will lead to an end of the terribly long headaches, complete return of your hearing and is an answer to years of searching for you. Keeping you in prayer and sending all of the good that is out there your way!

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Thank you, everyone here has been great, super helpful and I hope adding my thumbs up to Dr. Hepworth can help someone else.

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