KEY POINTS (1/3)
~ Subset of individuals with ME have anatomic abnormalities such as Chiari malformation, cranio-cervical instability (CCI), Atlanto axial instability (AAI), spinal stenosis & tethered cord syndromes
#myalgicencephalomyelitis
#Chiari #CCI #Tetheredcord #spinalstenosis
Free the cord custom tshirt with giraffe and green awareness ribbon. Me with a painful look. Filter over the phone of broken glass.
Hard to believe it’s been six years since my neurosurgery for a rare disease. I often think about how differently things could have turned out — and I’m endlessly grateful to still be able to walk, even when it’s difficult, and to work in DC doing what I love. #TetheredCord #RareDisease #ChronicPain
Dr. Clair Francomano explains 3 lesser-known neurological complications linked to #EhlersDanlosSyndrome (EDS): #Craniocervicalsyndrome, #tetheredcord, and #smallfiberneuropathy. youtu.be/K11wNtPn128?...
One child through spinal surgery for #tetheredcord. Second one March 14th. Thank God I no longer work for the government. I don’t think I could go into the office with this…
It’s been a rough few days. After my #hEDS diagnosis, I knew there were associated syndromes, but I wasn’t expecting to fill the entire #EDS bingo card. Even harder being a medical provider with #heds. I know too much. #disability #NEISvoid #CCI #AAI #tetheredcord #POTS #MCAS
I feel like I spend my life with icepacks wrapped around my head, and walking on tiptoes to relieve the 'squashed brain' feeling. Urg. #MEcfs #MEspine #TetheredCord #CCI
Welcome new followers!
We look forward to sharing #EhlersDanlosSyndrome #EDS #Hypermobility #hEDS #HSD and related info with you. Including:
#MCAS #MCD #Mastocytosis #Masto #POTS #Dysautonomia #CCI #TetheredCord #Fibro #Zebras #NEISvoid #MedEd #MedSky #Genetics #Doctors and more.
#Tetheredcord syndrome is a type of #SpinaBifida
The canadian medical system is very frustrating, my daughter has this diagnosis. She has been a guest at children's hospital on and off since she was 4 weeks old. Yet we do not qualify for the disability child tax, because she is doing well.
^ the author is my tethered cord surgeon btw, if you’re looking for an expert I highly recommend Petra Klinge at Rhode Island Hospital
#TetheredCord #EDS #MECFS #MEspine #LongCovid #POTS #MCAS
