Its been a while since I’ve been here. So i recently just found out besides chiari malformation type 1 I also have ehlers danlos syndrome yet to find out which type. The genetics doctor i seen, whom is amazing she spent 2 hours with me and didnt rush me at all, said chiari and ehlers goes hand in hand most of the time. Does anyone on here have these 2 syndromes together and what are your symptoms and how do you deal?
I’m not a patient myself. Of the seven or so people that I know with EDS, so far as I’m aware only one of them has a chiari malformation, but he’s not on here. And the one young person that I know who had the CM surgery, she didn’t have EDS. Obviously that’s a very limited selection, but it’s clear that while they MAY go hand in hand, they don’t always. I wonder what the stats are on a larger sampling.
I have both and also just met with a genetic counselor. I don’t know which type of EDS yet so I will be seeing a geneticist but can’t get an appointment until July 2023. My Chiari surgeon suspects I have the cardio EDS… Which I heard is the worst kind to have. I halso have heart disease, heart failure, POTS, dysautonomia and syncope… Not to mention a whole list of comorbidities. It’s also interfering with my emotional and mental health. I also have CPTSD from other traumas not related to my illnesses, or should I say in addition to. I feel you:purple_heart: