1/This care partner's tale in 9 tweets.
Son 35 yrs. Undetected spondylolysthesis and other musculoskeletal issues uncovered at 13 yrs due primarily to onset of pain during a period of rapid growth.
2/ First emergency spine fusion at 15 yrs after 2 yrs of medical profession denying that kids have pain. Teens are an invisible health care population.
Columbine happened in this period.
Every teenage boy in America had a target on their forehead.
Pain became 'kid wants drugs"
3/ Fusion failed. #FailedBackSurgerySyndrome
Blame the kid for failure to heal. Medical message: Shift the blame. Teach the kid that cure is his fault.
Teenage cutting, self-harm distracts from daily pain.
Back into surgical revision2 @ 16.
4/ 12 yrs coping w/out care. No fusion. Failure to cure marks him as a bad patient.
Anger and depression mark him as unsociable.
Mental health says we don't know how to do pain.
Pain says its a MH problem
5/ Fusion revision #3 when hardware again fails with no fusion. 12 hrs
Genetics testing - looks like connective tissue issues.
CYP450 Fast metabolizer
Mental health says we don't know how to do pain.
Pain says its a mental health problem
6/ 32 YRS. Fusion revision #4 pending. Hardware fails with no fusion
No care to be found anywhere. #RED_FLAGS #MEDICALLY_COMPLEX
Worn the fuck out.
7/ Move the kid to a different state #medical_cannabis to get access to a fully staffed neurosurgical center. Intake takes 9 mos.
Primary care abandons because #MCC, #DEA
Hanging on by a thread for a decision
Loss of function, independence,
To live or not is a daily decision.
8/ I don't know if we're going to make it to or through another huge surgery.
It requires a cache of mental, spiritual, physical wellness that this system of care has squandered.
Continuing to live in this state of #STIGMA adds no quality to his day.
#STIGMA may kill him.
9/ To healthcare providers, care givers, patients -
The only asset we bring to the table is a cache of hope for an outcome that moves us past the influence of unrelenting #STIGMA
The war on drugs in all its forms is a war on people.
STOP being a party to this.
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