/cervical instability\

I met with the neurosurgeon today. Lots of thoughts and feelings but I’ll give the highlights.

The good news is, all my internal skull/brain measurements are stable. The MRI shows no instability other than an increased basion dens interval. I do however have C1-C2 instability and C5-C6 instability. My measurements are borderline surgical, but he says with my case, he’s hoping a few months in a cervical collar (as much as I can) will help stabilize the joints and vessels and relieve some symptoms. I currently can’t wear it at work or while driving, so I’ll wear it at home mostly for now.

He also said, given my autoimmune history and other symptoms, he wants me to see an immunologist, a gastroenterologist, and I need to follow up with a proper endocrinologist for my Hashimotos disease.

He was one of the kindest doctors I’ve met. He was thorough, took his time with me, and answered all my questions. He also ran out and got a box of tissues when I unexpectedly started crying (that’s for another post). I’m exhausted, especially at the thought of seeing more doctors. But overall, it’s movement in the right direction.

Also, fun fact, I have no gag reflex 🥳




#ehlersdanlossyndrome #EDS #zebrastrong #POTS #MCAS #mastcellactivationsyndrome #craniocervicalinstability #CCI #dysautonomia #hashimotos #chronicillness #spoonies #alopecia #alopeciauniversalis #thespooniesisterhood #kidsandchronicillness #chronicpainwarrior #chronicillnesswarrior #chronicfatiguesyndrome #CFS #ME #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpainawareness #chronicpain

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