Selective Dorsal Rhizotomy: The Right Treatment for Spastic CP?

By Lee Vander Loop
CP Family Network Editor
View similar stories.
The surgical procedure known as Selective Dorsal Rhizotomy (SDR) has gained considerable public attention within the cerebral palsy community. It is a neurosurgical procedure performed with the goal of improving motor function by decreasing spasticity in children with spastic cerebral palsy. Numerous news articles have published stories of children who have experienced life-altering benefits from SDR surgery, such as regaining the ability to walk after being confined to a wheelchair since birth.

What is Involved?

Spastic cerebral palsy, left untreated, can have a severe impact on a child’s development and can lead to serious musculoskeletal deformities. Spasticity is caused by abnormal nerve impulses traveling down the spinal cord. Selective Dorsal Rhizotomy aims to correct this through neurosurgery at the spinal cord level.
During an SDR procedure, surgeons identify and cut selected dorsal nerve roots in the spinal cord that are responsible for abnormal movement in the lower extremities. These nerve roots are identified using electrical stimulation. Identifying the correct nerve roots is vital. If nerve roots coming into the spinal cord from the skin, bladder or bowel are cut, then the patient may develop numbness or bladder or bowel incontinence.
Just as every child’s level and severity of spasticity is unique, every child’s surgery is also unique. Some children may only need 10% of the designated nerves cut where another may require a higher percentage for positive results.

Eligibility

There are strict criteria used to determine a child’s eligibility for Selective Dorsal Rhizotomy. A multi-team assessment is made which typically includes a physiotherapist, a pediatrician and surgeons. The procedure is usually recommended for young children with CP spastic diplegia without dyskinesia or ataxia. Additionally, children who are without significant cognitive disability and those with a walking capacity within reach are considered candidates. This is an extremely complex surgery, and like all surgeries, presents risks. Parents need to be made aware of all the factors involved in this potentially life-altering procedure.

Benefits of SDR

• Reduces or eliminates the need for long term pharmacological intervention, such as muscle relaxants and antispasmodic medications.
• May offer immediate reduction in muscle tone in adductors, hamstrings and dorsiflexors with no recurrence of spasticity.
• Reduced need for other orthopedic surgeries to correct joint contractures.

Risks of SDR

• The procedure is irreversible.
• Post operative weakness and loss of some motor ability have been noted.  Intense physical therapy is required to regain strength and mobility.
• May lead to deterioration in walking ability or bladder function, or later complications including spinal deformity.
• Commonly reported post-op side effect includes abnormal sensitivity of the skin on the feet and legs lasting up to 6 weeks.
• Prolonged physical therapy (specifically physiotherapy) and aftercare is required.
• Additional surgery may be required.
• The full benefits of SDR may not be realized until up to a year after the surgery.
• Possibility of excessive weight gain. (I found this weight gain side effect to be true with my own daughter. As a result of significantly reducing her spasticity with ITB therapy (Intrathecal Baclofen Pump) she gained 40 lbs in the first year after the pump placement!)

Is SDR Right for Your Child?

If you believe your child may be a candidate for SDR surgery, speak with your child’s pediatrician, therapists, orthopedic specialist and neurologist.  Be prepared for the long haul.  Gather all the information you can.  Make lists of every question that comes to mind.
As with any major surgery, there are risks and threat of complication. Do the research to ask the right questions!As you research, write down questions and concerns that you encounter in your reviews. Think of all the details of pre-op, the initial surgery, post-op, long term rehab, therapies, pain management, educational needs and adaptations, mobility, assistive technology needs post-op, and other issues of importance that may come to mind. Remember the only “dumb question” is the one you don’t ask!
Further Reading:
Long-term Outcomes Five Years After Selective Dorsal Rhizotomy
Selective Dorsal Rhizotomy
Growth in Children with Cerebral Palsy during Five Years After Selective Dorsal Rhizotomy: A Practice-based Study
About Selective Dorsal Rhizotomy

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Boy With Cerebral Palsy To Get Tendon Surgery

Have you heard of the tendon lengthening surgery for children with cerebral palsy? One young boy from England is on his way back to the states to have his second surgery.
http://www.cpfamilynetwork.org/in-the-news/boy-with-cerebral-palsy-to-get-tendon-surgery

Dorsal Rhizotomy Operation Helps Young Man Achieve Dreams

Have you considered a dorsal rhizotomy operation? Here is one family that did and is seeing amazing benefits. Tell us your experiences and any questions you may have in the comments.

http://www.cpfamilynetwork.org/in-the-news/dorsal-rhizotomy-operation-helps-young-man-achieve-dreams

Girl, 6, with cerebral palsy, to fulfill ballet dream after having life-changing surgery in U.S.

Here is some very encouraging news for those suffering with Spastic Cerebral Palsy.  Doctors in St.Louis Missouri have successfully performed a life changing surgery on a 6 year old girl with CP.  I can't wait to track her progress and hopefully watch her as she fulfills her dream of being a ballet dancer.

http://bit.ly/cerebralpalsysurgery

My Four-Year-Old Had Tendon Surgery

By Kelly Jo Stidham

Kelly Jo, Blake and Kevin Stidham

In 2010, when my son Blake was four, it started getting harder to put on his braces (DAFOs).  As I would try, his right leg was so tight that it would scissor over the top of his left leg. It was so painful to bend his legs just to put on his pants. It was so painful to do his daily stretching.

Blake and I both felt the pain – he in his legs and me in my heart.  His physical therapist kept telling me nothing was wrong, but I knew better.

I called his orthopedic specialist. An exam and a few x-rays later we were told that Blake needed surgery. He was growing so fast and his spasticity was so great that his leg bone was pulling out of his hip socket. The doctor said Blake needed to have his tendon lengthened before any more damage occurred.

The thought of having my sweet little guy undergo surgery killed me, but I knew it was something he needed. The surgery took about 2-and-a-half hours. The doctor made three incisions on each leg: at the very top of his leg near his groin, in the back of his thigh, and on his calf. He then cut a Z shape in each tendon, which loosened the tendon and allowed Blake’s bones to grow freely.

After surgery, Blake was in casts from his toes to his knees and used knee immobilizers and a wedge. Physical therapy started the day after surgery and I had to continue the therapy three times a week for the next month. After that, the casts came, off but we had to keep using the immobilizers and wedge so that the tendons could heal properly.

It was amazing after the casts came off to see how loose Blake’s legs were. Stretching became easier and pain free. His assisted walking improved remarkably.  He didn’t scissor anymore, and his steps were taken with a purpose. He was able to walk longer. His shoes even fit better.

The surgery has given Blake such relief from the severe spasticity he suffered from.  His body has reacted well and he has grown tall. He’s much more confident about walking. We are looking forward to him being able to do it on his own.

My advice to parents? Follow your first instincts: if something doesn’t seem right it probably isn’t.  Find a doctor you trust. Establish a good relationship with your doctor. Be prepared for your appointment, and write down all questions and concerns. Don’t let anyone tell you your child has to live in pain.

There’s a good article on Leg Pain Treatments for Children with Cerebral Palsy on the CP Family Network website.  CP Families also has a good Facebook page where you can share information and hope.

Shriners help teen with Cerebral Palsy achieve dreams

August 1st, 2012

From http://www.dailyrepublic.com/

Isac Huddleston, 18, accomplished something recently that he and his family never thought possible: He walked to receive his high school diploma.

Huddleston has lived with spastic cerebral palsy his whole life. As long as he can remember, he’s walked with crutches and worn casts. Doctors told him he probably would never walk on his own, he said.

But with physical therapy, surgery and support, he handed his crutches to his friends, bound and determined to walk without them for such a monumental occasion.

“My friends told me to do my pimp walk and get my diploma,” he said, laughing.

His mother, Barbara Huddleston, cried while watching him from the stands at Rodriguez High School.

“It wasn’t the fact that he got his diploma,” she said. “It was the fact that he was walking.”

The Huddlestons said he would never have made such progress without the help and support of the local Montezuma Shriners and the Sacramento Shriners Hospital for Children.

Isac Huddleston was born prematurely, and at 3 pounds, 6 ounces, fit in the palm of his mother’s hand. As he grew up, Barbara Huddleston noticed he wasn’t developing normally.

“He didn’t sit up. . . . He’d cruise along the wall,” she said. “We really became concerned.”

His mother took him to the doctor to get diagnosed, but initially, they were left with few answers. When she finally received the news he had cerebral palsy, she was devastated.

“It was almost better not knowing,” she said.

Barbara Huddleston and her husband both had jobs and health insurance, but faced looming health care costs and struggled transporting their son to and from Sacramento for surgery.

That’s when Isac Huddleston’s grandfather, James Huddleston, directed them to the local Montezuma Shriners and the Shriners Hospital in Sacramento.

James Huddleston, a Shriner master himself, suggested they seek help through sponsors at the Montezuma Shriners.

Barbara Huddleston never thought that the group would sponsor her son because they had health insurance. To her surprise, they not only sponsored her son with free transportation to and from the hospital, but they significantly helped with the medical costs as well.

Ken Wright, ambassador and past president of the Montezuma Shriners, said that their organization is made up of dedicated volunteers. The Shriners, he said, don’t turn any child away, whether they have health insurance or not.

“Shriner loves taking care of kids,” he said. “We don’t want to see kids in wheelchairs and crutches if they can be helped.”

The enormous financial support from the Shriners was matched at the Shriner Children’s Hospital with personal and thorough treatment by its medical staff, Barbara Huddleston said.

Growing with cerebral palsy was difficult for Isac Huddleston, but he said he had some great experiences through the care he received at the Shriners hospital.

“There’s an uplifting spirit there,” Barbara Huddleston said. “They’re focused on making a good experience.”

One of Isac Huddleston’s favorite memories at the hospital was the East-West Shrine football game, where he hung out and played wheelchair sports with NFL players such as Jerry Rice.

Isac Huddleston proudly displays his Shrine Game memorabilia, including a football signed by former 49ers quarterback Ken Dorsey, in a case in his room.

His family has seen his condition improve by leaps and bounds over the years. Part of that improvement is thanks to the Shriners hospital, Barbara Huddleston said, and the other came from her son’s attitude.

“When I was younger kids asked ‘What’s wrong with you?,’ ” he said. “I said ‘There’s nothing wrong with me, I have cerebral palsy.’ ”

His mother said, “Rather than hide it, it’s been an educational experience for him.”

Isac Huddleston will head to University of Reno Nevada in the fall, where he will study environmental science. He said he would like to work with people with prosthetics and believes his experiences will allow him to help others.

As he heads to college, his mother said she is in of awe how far he’s come.

“Doctors had not expected his improvement to be as succesful as it was,” she said.

Without the support from the Montezuma Shriners, she said, she doesn’t believe it would have been possible.

“The Shriner support has come full circle,” she said. “We never know where he’ll go in life. That’s why we want to say thank you.”

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