The Cerebral Palsy Research Network (CPRN) announced that the Weinberg Family Cerebral Palsy Center (WFCPC) from Columbia University’s Irving Medical Center has joined the network. The WFCPC is CPRN’s first site in New York City and provides a large and diverse patient population, including children and adults, for the studies conducted by CPRN. The participation in CPRN, led by Jason Carmel, MD, PhD, includes an interdisciplinary team from orthopedic surgery, rehabilitation medicine, neurology and other clinical disciplines contributing patient and intervention data to the CPRN Cerebral Palsy (CP) Registry.
The Weinberg Family Cerebral Palsy Center is dedicated to improving the quality of life for people of all ages living with CP by providing comprehensive care, conducting groundbreaking research, and educating medical professionals, patients, and caregivers about the latest advances in cerebral palsy care. Members of the Weinberg CP Center team conducted over 3,700 patient encounters in 2019. Pediatric and adult services include orthopedics, physical medicine and rehabilitation, neurology, genetics, and mental health, along with social work and care coordination services. In conjunction with its clinical care mission, the Center’s academic efforts strive to bridge basic science and clinical research to directly impact the lives of patients living with cerebral palsy.
“The goals and values of the CPRN are perfectly aligned with those of the Weinberg CP Center, and the CPRN is an incredible resource for multidisciplinary research and collaboration,” said Dr. Jason Carmel. “Our team is excited to begin contributing to the CPRN’s efforts, as well as participate in projects and initiatives that will undoubtably lead to a better understanding of how we can improve the lives of our patients.”
This is the second in a series of blog posts on selective dorsal rhizotomy (SDR) in adulthood by guest author, Lily Collison.
Selection criteria for SDR differs between institutions. Characteristics of the “ideal” candidate for SDR at Gillette include:
Aged 4 to 7 years.
GMFCS level I–III.
Primarily spasticity (as opposed to dystonia) that interferes with function.
Preterm birth history or injury in the late second or early third trimester of pregnancy.
Periventricular leukomalacia (PVL) confirmed by neuroimaging. (PVL is the brain injury that commonly results in the motor problems seen in spastic diplegia.)
Satisfactory muscle strength, generally defined as antigravity muscle strength at the hips and knees.
Fair or good selective motor control at the hips and knees. This means being able to partially isolate joint movement (not moving the joint in a complete pattern). This requires sufficient strength and motor control, i.e., not being reliant on increased spasticity for stability or movement.
Good ability to cooperate with rehabilitation.
Other than specific brain injury and age, Tommy met the selection criteria above. Tommy’s primary tone problem is spasticity (minimal dystonia) and the degree of spasticity was problematic for him. Though he does not have the classic brain injury (PVL), it was felt that his brain injury would behave similar to one, in causing spasticity. It would have been far more ideal had Tommy undergone SDR as a child. Tommy missed the opportunity to have it then, as we lived in Ireland and by the time I learned of SDR, he was already aged nine and needed orthopedic surgery to address the muscle and bone problems that had already developed. (Today, Irish children who meet defined selection criteria are able to access SDR in the United Kingdom.) SDR in childhood is better than in adulthood because the older the person, the longer they have been experiencing the negative effects of spasticity on their muscles. SDR in childhood is also better because rehabilitation after surgery (of any type) is more prolonged in adults than in children–adults heal more slowly than children.
Despite the above SDR in adulthood is still beneficial–it reduces the negative effects of spasticity on muscles over a person’s lifetime. Tommy is only 26 with a normal life expectancy. Apart from preserving his muscles, Tommy’s walking will hopefully become more energy efficient, which should translate into greater endurance in walking. Before SDR, his energy consumption in walking was 2.4 times normal. By one year post-op, it is hoped that this will have improved somewhat–it still won’t be normal (nor near normal) but any improvement is valuable. Although SDR is adulthood is beneficial, it is a big consideration. The most difficult short term challenges (i.e., following the surgery and during early rehabilitation) for independent adults following this type of surgery include loss of independence, loss of ability to care for others, and loss of income.
In the next post I’ll address surgical decision-making.
(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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Do you have questions for me about this post? I’m available on the MyCP.org forum (you will need to join MyCP if you are not a member) to discuss it.