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.