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Eagle Syndrome - Online Support Group

First Post: Salutations

Hello everyone! I’m Nancy. 42 yr old mom of 1, step-mom to another, live with husband near Boulder, CO though I grew up in Brooklyn, NY (Howyadoin @BrooklynGirl). I officiate roller derby and read a lot of books for fun.

I’ve been seeing Dr. Hepworth in Denver for the last year as he was waiting for me to get out of Kaiser and onto my husband’s health insurance so he could order more tests as my head CT, brain an c-spine MRIs looked normal. He sent me to Dr. Annest (vascular surgeon) for a neck ultrasound on 1/10 that showed reduced blood flow in the internal jugular vein at the SCM/OH and Cartoid Bulb levels. He just did a physical exam and review of symptoms on Monday (3/2) and said he’s going to tell Dr. H that he thinks it’s Eagle Syndrome. My follow-up visit with Dr. H is on Thurs (3/5) to go over everything. I’m thinking we should get a neck CT to look at the styloids before we schedule surgery, just to double check.

So that’s my ES story so far, but the complicating factor is that I have Ehlers Danlos Syndrome, a connective tissue disorder where the collagen isn’t as sticky as it should be to hold joints together, among other structures. It has taken FOREVER to figure out what symptoms belong to the EDS, and what was not EDS, and connect the dots to get to the right diagnosis! I’m a little concerned about wound healing, and impact of surgery on my body, but it sure would be nice to get rid of my base of the skull headache that wraps around my head as it likes to hang out for days or weeks at a time.

Nice to meet all of you, and thanks for all of the help so far! I’ve been browsing for the last couple of days and found a lot of helpful info. :slight_smile:

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Unfortunately we’re seeing quite a few members with EDS & ES- bad enough to have EDS to deal with without anything else on top, I feel for you…
It’s best to see someone with experience anyway with surgery for ES, but especially so with EDS . Has Dr Hepworth done many surgeries? I think he’s seen a couple of members. If not it might be worth travelling to see someone with experience.
Best wishes to you, let us know how you get on!

Hi AmbyNYC! Brooklyn is the greatest place. I lived in London, Tokyo and Florida (when I was in HS) but always came back to Brooklyn. Though I wouldn’t mind moving to someplace like Boulder so I can be out in the great outdoors more.

I had both removed externally - one at at time, the last one almost 3 months ago. Take all of the advice here on post-op recovery. These surgeries take time to heal from but we do heal.

All the best to you.
BG

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HI Amby,
I was recently diagnosed with ES and also have EDS. Ive had neck problems and instability for decades (have lots to say about that) and finally got a cat scan where I live in Seattle around Jan 1. I sent the CT to Dr. Samji in San Jose, CA and had him review it since he is one of the major experts in the country. I ended up flying to see him for consult as flights were dirt cheap. He charges $300 for a consult and will do it by phone. He confirmed I have ES, measured the elongated stylus much differently than radiologist. He has performed over 450 of these procedures. Im scheduled for surgery on April 5th. I also went to a ENT group at major medical center last week for 2nd opinion who agreed I had ES but tried to indicate the pain was from acid reflux.He claimed to have done about 40 of the procedures but did them differently from Dr. Samji. Issaih a moderator on this list will probably comment soon and confirm that its usually an ENT who has a cancer specialty including neck surgery that performs more of these kind of surgeries.
Stick on this list and you will learn alot. Welcome from Boulder. I used to live in Denver and Steamboat Springs before I headed west.
Snapple

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Update: Had follow-up visit with Dr. H today in Denver. He ordered a craniocervical MRI to evaluate nerves and styloids. Also wants me to consult with CCI specialist to double check if there is something else causing my symptoms. Getting on surgical schedule for Dr. H and Dr. A, follow up on 5/5 to review and see if we’re moving forward with surgery, if MRI and CCI Dr confirm Eagle Syndrome or find something else.

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Hi AmbyNYC -

Is the CCI doctor also near you? I didn’t know there is a CCI doctor specialty. I learned something new today! I’m glad Dr. H is being thorough & not just jumping into ES surgery. :+1:t3:

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My feelings exactly!

My PT said that she knows of a cervical instability specialist in Denver. Probably some type of neuro, spine or neck specialist who has a special interest in instability, so not technically a “CCI specialist”. Sent an email today to ask for the name. CCI was the next thing on my list to investigate after the CSF Leak diagnosis didn’t pan out.

Can’t schedule the MRI until Mon as I got home after 5pm and they’re not open on Fridays. It’s at a Chiari treatment center so they should have others who know about instability in that area.

I would be so happy if I didn’t have these base of the skull headaches that wrap around the sides, they last for weeks at a time and make me cranky.

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Good that all things are being considered, you want the full picture before you have surgery, hope it doesn’t all take too long.