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Eagle Syndrome - Online Support Group

Some Good

#1

I think with any complicated problem, you can’t help but ask, “Why?? What good will come from this??”
I clearly remember when we approached my functional neurologist with literature about Eagle’s Syndrome and my imaging showing the elongated styloid. Dr. Samji removed it and the scariest signs and symptoms are gone; I’m still dealing with some issues from Thoracic Outlet Syndrome from my first ribs being too puny to reach my sternum, so the same functional neurologist is helping navigate all that.
At my appointment the other day, he said, “Guess what? I diagnosed someone else with Eagle’s Syndrome! Who was that surgeon you went to?”
So maybe there was someone out there that, if I never had Eagle’s Syndrome, never would have known why she had these weird one sided symptoms in her head. Now she has a diagnosis and a path to healing. The doctor looks like a rock star, and it made me feel good, too.

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#2

Well that’s good news then, & that’s just one that you know of…who knows how many others might get helped like ripples in a pond! I’m sure that sharing your story on here has helped many who’ve read it, not everyone posts on here but there’s lots of people who have a look! So thank you for your updates, & I hope that you can get some answers / treatment for the TOS. :+1:

#3

Hi julianeagle,

I have a similar story, someone being diagnosed because their physician whom I know, recognized similar symptoms as myself and referring them on for treatment…It just made me smile and say “that makes it all worth it”, my pain and suffering is all worth it knowing someone else I don’t even know is on their way to getting help. A very wise friend once told me to look for the surprises…well - no better example than these :purple_heart::sparkles: Hope you are very well

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#4

Hi julianeagle,

So good to see your post! I’m very thankful for the symptoms that are gone & that you have hope of resolution for the worst that remain.

How awesome that your ES experience has educated your neurologist & enabled him to help someone else!! That’s the kind of stories we love to read!!

:heart:

#5

Hi Julian,

I have a similar story, but with my CSF leak. I was in horrible pain, but all my tests with the specialists were negative. My AMAZING PCP has a relative with a CSF leak and because of that she knew what it was and referred me to her doctor.

He diagnosed the leak and the ES. My daughters and granddaughter were all diagnosed with EDS, which would have never happened either. I think of this unknown person often and thank her every day. Had it not been for her suffering my daughters and granddaughter would not have been able to seek preventative treatment for the EDS and I would have suffered much longer.

It truly is a small world!

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