Hello everyone, I am a new member here! I thought this was interesting and wanted to share, I’ll update on my story later hopefully.
I am a triplet with an identical twin sister. We split in the womb and have developed differently. When I was diagnosed with Eagles Syndrome, everyone wondered if my twin had the same condition. Today we found out she does not, in fact, have it. I think it’s fascinating that despite being identical, she doesn’t have it. I thought people might like this because if looked further into, I feel it could answer some questions about the origins of ES.
That is interesting; did you have any neck trauma which your twin didn’t have, that’s quite a common cause?
I am also an identical twin & my sister doesn’t have ES either…I had a whiplash injury 25+ years ago and have had neck trouble ever since which I believe caused my ES, she hasn’t had an injury like that.
We have had some members with a family history, so there can be a hereditary link though…
Not that I know of! I was a pretty active kid despite my migraines so I know I’ve fallen and hurt my neck before, but more likely so has she. We haven’t had any major trauma to our necks that I know of! We had tonsillectomies which I heard can be a cause but my doctor told me mine had probably been there since birth.
@EMB2004 - Interesting that your doctor thinks you’ve had symptoms from your styloids since birth. The possibility does exist because it’s not just styloid length that is the cause of all ES related symptoms. If your styloids are very angled, curved, twisted, pointed or thick, but normal length, they could cause problems, too.
We usually associate migraine level headaches w/ vascular ES i.e. either compression of the internal jugular vein(s) (IJVs) or the internal carotid artery(ies) ICAs. Getting a CT scan w/ contrast w/ your head in the position or positions (looking left/right, up/down, or on the diagonals) that make your symptoms worse, will provide more accurate results if you do have compression than if you have the CT w/ your head in neutral position (face facing the ceiling).
If you get a CT that shows IJV compression, in particular, you would do best to see one of the vascular ES specialists on our Doctors List, but I’m sorry to say, none of them are near where you live.
Thank you for the information. This would make a lot of sense as my “GERD” does not seem the same as my parents, though anti-acid medicine has helped. If you don’t mind me asking, in your opinion, which doctors on the list are the most experienced with vES? I am lucky to have a very supportive mother who would most likely travel if we cannot find any good doctors near us. She is worried about letting it be since I am young (surgery will hopefully be easier) and it can have complications later on/problems. I am going to explore my options and maybe even reach out and ask some doctors if they do/know of anyone who does scans or treatment. I appreciate you guys!
Dr. Hepworth in Denver & Dr. Nakaji in Phoenix are the two doctors closest to you who do IJV decompression surgeries. Dr. Hepworth’s ofc is a bit more disorganized & challenging to work with but we are hoping that will change over the next few months. Both are on our Doctors List which you can find under the Symptoms category on the home page.
