(This post in first in a series of knowledge translation posts that will be provided by our new guest author, Lily Collison). I’m Lily, mother of Tommy who is now aged 26. Tommy grew up in Ireland, studied journalism at New York University, and now lives in San Francisco where he works at Lambda School (an online coding school). Tommy has spastic diplegia, GMFCS level II. I recently published Spastic Diplegia–Bilateral Cerebral Palsy in conjunction with Gillette Children’s Healthcare Press. The book is a mixture of detailed medical information combined with a personal story, and all proceeds go to cerebral palsy (CP) research. I’m now going to be a guest author for the Cerebral Palsy Research Network (CPRN).
In February of this year Tommy had selective dorsal rhizotomy (SDR) at Gillette Children’s Specialty Healthcare, in Minnesota. SDR is a neurosurgical procedure that reduces spasticity by selectively cutting abnormal sensory nerve rootlets in the spinal cord. This procedure is mostly carried out in children and to a much smaller extent in adults. Recent research carried out by CPRN showed that 5% of those who have SDR were over 18 years. Tommy is therefore one of the minority of people who have SDR in adulthood. Over the next few weeks, I’ll write about SDR in adulthood and Tommy will also contribute (when he gets a break from working and rehabbing ?)
At this stage Tommy has a thick patient file at Gillette. At age nine he had single-event multilevel surgery (SEMLS) to address muscle and bone problems that had developed as he grew. At age sixteen he had orthopedic surgery to address knee pain, and at age eighteen a further minor orthopedic surgery. The possibility of SDR was first raised in Fall 2019, at a routine orthopedic appointment with Dr. Novacheck, Tommy’s orthopedic surgeon at Gillette for many years. A multi-disciplinary appointment was organized for December with consultants from neurosurgery, physical medicine and rehabilitation (PM&R), and orthopedics to evaluate Tommy’s suitability for SDR. The clinicians agreed that Tommy was a suitable candidate, and Tommy agreed to proceed with the surgery. SDR was carried out in February of this year, right before COVID caused widespread shutdown in March.
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