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Jennifer Brea @jenbrea
, 11 tweets, 5 min read Read on Twitter
👋🏼 just wanted to share with you a new diagnosis. As suspected, I have craniocervical instability. My skull is compressing my brainstem causing my breathing + other problems. I’m having surgery later this month to stabilize my skull + neck. Learn more:…
Craniocervical instability and atlantoaxial instability are a common complication of Ehlers-Danlos Syndrome, especially #hEDS. I don’t meet the criteria but it’s clear hypermobility is an important part of my clinical picture. #Nightingales
A handful of other #pwme have also been diagnosed with CCI/AAI in the past year including @jeff_says_that who, at one year post-surgery, considers himself in remission from both #POTS and PEM:
@jeff_says_that shares resources on his website to learn more about how CCI/AAI is diagnosed and treated surgically. Milder cases are often treated conservatively (meaning cervical collars + physical therapy).
Jenny, who has #vEDS and #MyalgicE, also has CCI/AAI and is fighting to get treatment in the UK, where there are huge barriers to diagnosis and treatment (the top neurosurgeons for CCI/AAI are in the US and Spain).
These are the symptoms of CCI/AAI:…
@jeff_says_that has offered to answer any questions #pwme might have. #mecfs #Nightingales
I have probably had a mild case of this for years but it wasn’t until my thyroidectomy—which dramatically worsened my symptoms—that it was clear that something was wrong with my neck. Or more precisely, how my skull sits on my neck.
Ironically, had things not gotten this bad, I probably would never have been diagnosed. Even as it stands, I probably had a <5% chance of diagnosis given that this is treated by a handful of doctors around the world, considered a complication of a rare disease I don’t even have.
I thought I’d get a pass on this one but the number of people offering me alternative therapies, including mind-body medicine, for this diagnosis is incredible. (Not on Twitter, FB.) I suppose you can also mind-body a broken arm (?)
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