Maddy Hatchett

Yesterday I celebrated my second birthday confined to bed. I’ve been too ill to give a proper health update so I will do my best while also trying to celebrate the little pieces of beauty and love woven into each day. Most of these photos represent when I could still move upright, uncollared, without crippling symptoms.

My spinal cord is confirmed retethered for a third time and has been so since 3-4 weeks after my second tethered cord release which in the words of my world-class neurosurgeon is “unprecedented”. This means once again my brain is being pulled to the base of my skull and I’m accruing a progressive multi-level spinal cord injury along with Intracranial Hypertension. In practice, I am again stuck in bed 22+ hours/day with severe CNS pain and neurological deficits. Rapid muscle wasting in my limbs, loosing the ability to walk, inability to sit up meaningful periods of time or without debilitating pain/feeling like fainting, vertebrae in my spine dislocating, and 80+ other constant symptoms. My nerve roots have clumped together and the surgeons I’ve consulted are wary of the possibility of adhesive arachnoiditis which rivals conditions like CRPS on the McGill Pain Scale and can lead to paralysis in severe cases.

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#ehlersdanlossyndrome #tetheredcord #craniocervicalinstability #chronicillness #austinmusicians