PT Kids on: Selective Dorsal Rhizotomy
Our team of therapists have vast experience in assessing and treating children pre & post Selective Dorsal Rhizotomy (SDR). Our physiotherapist, Daniel Woods, has now treated over 25 children who have had the procedure in the past 6 years. Including providing regular intensive rehabilitation.
This includes children who have had the procedure at St. Louis, Leeds, Sheffield, Nottingham
A wide variety of ages:
– 3-16 years
As well as ranging presentations:
- Pure spasticity as well as some children with accompanying dystonia
What is SDR?
In brief, SDR is a major surgical procedure. Used to treat spasticity in children diagnosed with Cerebral Palsy (CP).
It involves dividing the lower spinal nerves. Cutting those identified as responsible for producing spasticity.
SDR is currently the only procedure that offers a long-term reduction, or elimination, of spasticity in the lower limbs.
The most common form of CP deemed appropriate for this type of operation are children diagnosed with Diplegic Cerebral Palsy who present with spasticity (as opposed to ataxia or dyskinesthesia). Diplegia more predominantly affects the legs. Spasticity is a restriction in the muscle to movement. It can present as tightness & it can prevent the affected muscles from actively moving through their full range of motion. Commonly seen as walk on tiptoes, being crouching/unable to fully straighten the knees and hips when standing and scissoring of the legs when walking.
What are the potential benefits?
By reducing or eliminating spasticity in the legs, it gives the child greater potential for movement. Which in turn could lead to greater function & increased independence. As well as improving posture, the ability to stretch & position the legs and reducing pain.
In turn, this means that you can ‘re-train’ the muscles how to work, such as teaching the child to walk with their heels down and it gives you greater potential to build strength in a muscle which is less tight & restricted.
The importance of post-SDR physiotherapy
By no means is SDR considered a ‘quick fix’ & post-operative physiotherapy is vitally important to the long-term success of the operation.
In fact, the National Institute of Clinical Excellence states ‘prolonged physiotherapy and aftercare will be needed’.
Children who have always learned to walk in a certain way will continue to do so unless taught how to do it differently & physiotherapists are ideally placed to do this as experts in movement and development. They teach something commonly referred to as, normal patterns of movement.
Progressive strength training
Progressive strength training also forms another vital part of the rehabilitation process as it is known that children with CP have underlying weakness. Particularly where some muscles become underused, under innervated and overstretched owing to the tightness and overuse of those muscles previously affected by spasticity. With spasticity eliminated, the ability to strengthen these muscles increases.
Of similar importance is to progress, where able, the amount of walking a child does as well as tailoring the support they use to do so. To maximise independence and function selecting the right orthotics and walking aids, at the right stage of a child’s rehabilitation is carefully considered. The aim might be for a child to progress from walking with a frame to walking with sticks, or even to learn to walk independently. Your physiotherapist can help with progressing you child at the right stage of their rehabilitation.
Your local authority may be limited in the amount of post-operative rehabilitation they can provide & it will depend whether your SDR surgery is self-funded, NHS funded or partially funded. It is important to understand this and have a plan prior to surgery.
SDR: A parent’s perspective
Parents of #TeamPTKids superstar Ethan, Lindsey and Nick, have kindly answered some questions regarding their SDR journey which is a great insight for those families considering the procedure.
Please tell us a little bit about your child & when they had their SDR procedure?
Ethan was diagnosed with Cerebral Palsy (spastic diplegia) at 18 months old although it had been suspected from around the age of 7 months. He’s now 5 years old and had SDR surgery in November 2016 (age 4) at Leeds General Infirmary. Prior to his SDR surgery Ethan was able to crawl and could walk for short distances with a walking frame but this had become increasingly difficult. The spasticity in his legs was severe and gave him a lot of discomfort at night.
What made you choose SDR?
Ethan had been under the care of an orthopaedic surgeon at Sheffield Children’s Hospital from a young age. He had already received 2 Botox procedures, which improved his mobility temporarily. However, his mobility was deteriorating due to excessive scissoring of his legs when he walked. He was on maximum doses of baclofen which made him very tired and the MDT at Sheffield couldn’t offer any procedures in the foreseeable future.
Our NHS physiotherapist had always been very supportive. They felt that Ethan had great potential if we could reduce his spasticity. The team at Sheffield were happy to refer Ethan for assessment at Leeds General Infirmary, who could offer alternatives such as SDR surgery or an intrathecal baclofen pump.
We had researched different treatment options which were available to children with spastic diplegia and had heard of SDR surgery but were apprehensive. Due to the permanent nature of the surgery.
What was your experience of having SDR?
Ethan was referred to the spasticity clinic at Leeds General Infirmary where he was assessed in June 2016. At this appointment, he was seen by the physiotherapist and Mr Goodden’s (consultant neurosurgeon) team. They put us at ease and spent time talking to us about what we hoped from SDR surgery. They explained the procedure and what the expected outcomes for Ethan could be. For Ethan, fully independent walking was unlikely. But they felt he could be free from his discomfort and baclofen medication which was having negative side effects.
In order to ensure that Ethan was not using his spasticity to stand/walk in his frame, they carried out an intrathecal baclofen infusion in September 2016. This removed almost all of his spasticity for around 8 hours. During which time the physiotherapist assessed him. This confirmed that he was appropriate for the SDR procedure.
How did the surgery go?
His SDR surgery was carried out in November 2016. After the surgery, he stayed on HDU for 48 hours where he was kept pain free and still. He was then transferred to the neuro ward where he was allowed to start to get out of bed and did his first physiotherapy sessions. We cannot praise the hospital staff and physiotherapy team enough for their help and care while we were there. They were very supportive and dealt with Ethan’s anxieties with great care and compassion.
On day 4 they discharged Ethan. We then stayed in Leeds for 3 weeks. This was while he had twice daily physiotherapy and checks back in the neuro ward. As expected he became very weak post op but worked incredibly hard. He was already using the treadmill and parallel bars after just a week. His care then handed back to our local physiotherapist 4 weeks after his surgery. Ethan then returned to school full time just 5 weeks post-surgery.
What fundraising have you done to support your child’s SDR input?
Leeds advised us that we would require the cost of surgery plus £20,000 to cover the cost of additional equipment and therapy for 2 years post-SDR. We started to fundraise in June 2016 with the charity Just4Children. Who’ve been absolutely amazing at supporting us and managing his funds.
We have had massive support from friends and family. Many of who have taken on sponsored challenges e.g. marathons, walks, tough mudder etc. We have also had support from the Lions who helped us to run a race night. As well as this family and friends have organised quizzes and comedy nights/raffles.
Our fundraising will need to continue in order for Ethan to continue his therapies long term.
What is your child’s exercise & physiotherapy routine post-SDR?
Ethan received physiotherapy 3 times per week for the first 6 months (NHS and Private physiotherapy.) He now has 2 private physiotherapy sessions per week in addition to blocks of NHS physiotherapy. Ethan is at mainstream school and his 1 to 1 assistant carries out exercises when physiotherapy is not taking place.
He also has a swimming lesson each Monday, weekly horse riding with Rossington Hall RDA and attends a SEN dance class, Leapz and Beats, locally.
Every 3 months we travel for Ethan to have an intensive 2-3 day strength and confidence course.
How have PT Kids helped with your child’s SDR rehab?
PT Kids started their input 4 months after Ethan’s SDR. He has 2 sessions of physiotherapy a week with Daniel Woods and Martin Goodlet. We deliver one of the sessions at school and the other is at home. Ethan has a great relationship with both Dan and Martin and they always make the sessions fun and engaging.
Through PT Kids, NHS physiotherapy and other therapies Ethan has made fantastic progress in the past year. He is now able to sit cross-legged, high kneel, climb stairs, walk in his frame for much longer periods and has started to walk with tripod sticks. In recent weeks he has even managed a few seconds of independent standing!
Thanks to Lindsey & Nick for this tremendous insight and well done to Ethan for the amazing progress he is making!
Why choose PT Kids for your child’s Post-SDR rehabilitation?
We are vastly experienced in providing rehabilitation to children who have undergone SDR. We provide SDR physiotherapy in Leeds and the surrounding area and we are able to work alongside your NHS therapist. As well as any specialist centres that you may visit with your child. On request, we provide update reports for your consultant when you visit clinic for your SDR review
We offer input in the home or school and deliver regular sessions 1-3 times per week, as indicated. Similarly, we act as a consultation service to families who decide to complete the rehab themselves. Reviewing children at regular intervals to update treatment plans and teach new appropriate exercises….we can be flexible to meet your child’s level of need.
For those families fundraising, we already work with charities including; Tree of Hope, Just4Children & Caudwell Children, which makes invoicing easy.
We consider ourselves as advocates for the surgery & have seen children achieve remarkable results over the past 6 years.