Selective Dorsal Rhizoplasty (SDR) is a much publicised operation pioneered by Dr TS Park in St Louis in the USA. It is done on people with cerebral palsy to help manage and reduce spastisity. It involves cutting nerves of the spinal cord in the lower back- the aim is to limit the flow of spastisity causing information reaching the legs. It allows the child to be taught to learn their ‘walking legs’ and relearn movement patterns without spasticity- it requires a tremendous amount of physio and therapy and a hard working, determined patient and family.
Most CP parents will have heard of it- often on the TV with children with CP and their family raising money for a trip to the States to have the op as it is not currently available on the NHS. It appears to have become a little bit of a media driven ‘miracle cure’.
Why? Why isn’t it available on the NHS? It is a good question and one answer is not something a parent of a child with CP wants to hear- simply there is no guarantee of its effectiveness.
There are many children who have experienced life-changing gains with an SDR. Without the overbearing high muscle tone a child could potentially relearn to sit walk and move more freely. Sounds a no brainer? Our physio thinks so- he has worked with a number of children similar to Charlie and has been involved in the fantastic achievement of unaided walking with them after SDR. However, our Paed Orthopaedic Consultant thinks not- he is not a keen proponent of SDR for the masses, only those select few that might be suitable for it- he doesn’t think Charlie is… Two people I have grown to trust and respect explicitly have opposite views- not an ideal position.
Now, this isn’t going to be a ranting post on why NHS consultants are not supporting potentially beneficial treatments as I actually understand and support his view. NICE, the evidential body supporting medicines, treatments and operations in the UK does not yet see SDR as an effective or wholly beneficial treatment- why? It’s down to risk. Cutting the spinal cord is an extreme and permanent treatment- there is no going back. A slight mis-cut may result in completely altered sensation in the legs or loss of bladder control. It also relies on spasticity being the major limiting factor in walking- what about the legs representation in the brain? Does the brain recognise the childs’ legs as their own? Is the brain able to recognise sensation from the feet; heat, pain or pressure? Are the balance centres of the brain working? As such ABM would not recommend SDR due to its intrusive interventional approach.
Mr Davies feels that Charlie’s response to other treatments has been super and he continues to make gains- can he achieve WITHOUT cutting his spinal cord? He feels that Charlie’s high tone also hides areas in his body that suffer low tone and weakness like his trunk and his shoulders- also vital components in walking and balance. To perform such an operation may reveal weaknesses that cannot be therapeutically aided and as such may leave Charlie worse off.
The literature is also conflicting- many case reviews show fantastic improvements and happily functioning children. Others suggest that SDR offers short-term improvements in function and others suggest 50% or less of children are functionally better off over a period of 10 years (link)! This is a big reason for the deliberations of NICE in the UK and why only trials have been offered for a ‘lucky’ few.
The big question is an emotional one… Do we put our child through a painful operation with risk of side effects or do we avoid and miss out on potentially life changing function?
Right now, I agree with the Consultant. Maybe it comes down to the numbers game- less than 50% of children having SDR are better off in 10 years time. I guess the ‘Risk vs Reward’ debate is the real issue. I can’t help but feel that if I can avoid risk it must be better but will we look back and wish we had pushed?