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Parenting The Chronically Ill: Spinal Cord Surgery
The spinal cord edition
At the end of May Bit was diagnosed with a tethered spinal cord. This had been a diagnosis long coming and long overlooked.
Back when Bit was 2 she started having balance and motor issues. She has always had left sided weakness. She fidgets all the time. She complains of numbness and tingling in her extremetities. She has 0 reflexes in her lower extremeties.
Bit is now 8, for the past 6 years we have gone to every doctor imaginable and been given many incorrect diagnoses. Her team of doctors struggled to find out what was causing these falling spells. She underwent every test. They did a brain and thorasic spine MRI, CT scan, cardiac testing, EMG, EEGs of varying lengths (1 hour to 96 hours) everything was normal. Everyone agreed something was wrong though.
Then in April she had a full spine MRI, head, thorasic spine and lumbar spine. The neuro was looking for Chiari Malformation, which goes hand in hand with her other diagnoses. When we got a call from the neuro it was, “No it isn’t Chiari, but you need to see the neurosurgeon. Call them” No results, but call neurosurgery. So, we did.
When we got the the surgeon they explained her spinal cord was tethered. It is supposed to float freely in cerebral spinal fluid. Hers was stuck to…
