Selective Dorsal Rhizotomy (SDR)
SDR (Selective Dorsal Rhizotomy) Surgery is a procedure aimed at helping to reduce lower limb spasticity in children with certain types of Cerebral Palsy - it is not suitable for all cases, and it is not currently funded by the NHS.
The following articles have been provided by experts from Bridge McFarland Solicitors, who specialise in Cerebral Palsy cases on a day to day basis.
The following articles have been provided by experts from Bridge McFarland Solicitors, who specialise in Cerebral Palsy cases on a day to day basis.
Article 1
SDR SURGERY: EXPLAINED
by Shaun Rylands, October 2017
Selective Dorsal Rhizotomy (SDR) is a surgical procedure that may help children suffering from certain types of cerebral palsy and particularly those who have problems with leg movement.
Cerebral palsy arises from a brain injury sustained by a child, often before he or she is born although it may also occur during the newly-born (neo-natal) period. The injury may not be detected for some years and is usually noticeable when the child has delayed developmental milestones relating to matters such as posture, walking, balance, language and learning.
A common cause of cerebral palsy is premature birth and/or oxygen deprivation. Certain parts of the foetal brain may be damaged, particularly the parts which control leg movement and co-ordination. This can lead to stiffness in the muscles and can impair the child’s mobility and learning capacity.
The muscles in both the arms and legs may be compromised, although spastic diplegia, which affects the leg muscles more than the arms, is the most common type of cerebral palsy.
The National Institute for Health and Clinical Excellence (NICE) states in its Guidelines that:
“Lower limb spasticity affects 80% of people with cerebral palsy. This can impair walking and sitting, and can cause discomfort, cramps and spasms”
The NICE Guidelines explain that:
“The aim of selective dorsal rhizotomy is to ease muscle spasticity and improve mobility in people with cerebral palsy. It involves cutting nerves in the lower spine that are responsible for muscle rigidity”.
If the procedure succeeds it may reduce lower limb spasticity, reduce the number of subsequent orthopaedic procedures, improve gross motor function, improve gait and walking and improve the child's level of independence and his or her quality of life.
It is important to realise that SDR is not a cure for cerebral palsy, but if the procedure succeeds it may help a child’s physical state by reducing muscular stiffness and improving a child’s mobility.
SDR is carried out while your child is under a general anaesthetic and the Great Ormond Street Hospital reports that the procedure takes around four to five hours.
Physiotherapy will be needed following surgery to obtain the best results. At first, this takes place in hospital and then at your home, usually with parents helping and participating. The NICE Guidelines point out that there is a chance that further surgery will be required.
Is SDR Suitable For My Child?
It is generally accepted that SDR is most suitable for children with spastic diplegia aged between three and twelve years of age. If your child is older, he or she may still benefit from SDR but may also need orthopaedic surgery.
To determine if your child is suitable for the SDR operation, he or she will need multi-disciplinary medical assessment, including Paediatric and Neurosurgical assessment, an MRI scan of the brain and X-Rays of the hips to confirm the stability of the hips.
SDR is a procedure that cannot be reversed and before it is tried, intensive physiotherapy and other treatments may be trialled, including treatment with injections known as botulinum toxin injections.
What Can Be Expected From The Procedure?
Children whose cerebral palsy is related to premature birth may have a good response to SDR. This is not the case for all causes of cerebral palsy and SDR is not suitable for all types of cerebral palsy.
According to Great Ormond Street Hospital:
“There is now enough evidence to demonstrate that SDR is associated with substantial long-term benefits. These are not only related to reduction in spasticity, but also relate to improved movement and walking as well as improved quality of life for both the children and their families”.
The NICE Guidelines state that:
“The non-randomised comparative study of 142 patients treated by the procedure or ITBP (intrathecal baclofen pump) reported that 94% and 96% of parents respectively were satisfied at 1-year follow-up”
How is SDR funded?
SDR surgery is a hot topic for the UK cerebral palsy community as although the NHS appears to offer the treatment there are problems with funding. However, it is available on the NHS and a number of the procedures have been funded by the NHS.
You should ask your doctor if your child can be referred to a hospital when their procedure can be carried out on the NHS.
Many procedures take place on a self-funded basis. Dr Park at the St Louis Children's Hospital in the US is the leading authority on SDR surgery.
However, UK Hospitals where SDR is available include:
If you suffer from cerebral palsy or your child, a family member or a friend suffers from cerebral palsy then our team of experienced lawyers could provide support in obtaining information about the condition and about treatment by SDR. Click here for more information.
This article is based on the following sources and further information can be obtained from:
SDR SURGERY: EXPLAINED
by Shaun Rylands, October 2017
Selective Dorsal Rhizotomy (SDR) is a surgical procedure that may help children suffering from certain types of cerebral palsy and particularly those who have problems with leg movement.
Cerebral palsy arises from a brain injury sustained by a child, often before he or she is born although it may also occur during the newly-born (neo-natal) period. The injury may not be detected for some years and is usually noticeable when the child has delayed developmental milestones relating to matters such as posture, walking, balance, language and learning.
A common cause of cerebral palsy is premature birth and/or oxygen deprivation. Certain parts of the foetal brain may be damaged, particularly the parts which control leg movement and co-ordination. This can lead to stiffness in the muscles and can impair the child’s mobility and learning capacity.
The muscles in both the arms and legs may be compromised, although spastic diplegia, which affects the leg muscles more than the arms, is the most common type of cerebral palsy.
The National Institute for Health and Clinical Excellence (NICE) states in its Guidelines that:
“Lower limb spasticity affects 80% of people with cerebral palsy. This can impair walking and sitting, and can cause discomfort, cramps and spasms”
The NICE Guidelines explain that:
“The aim of selective dorsal rhizotomy is to ease muscle spasticity and improve mobility in people with cerebral palsy. It involves cutting nerves in the lower spine that are responsible for muscle rigidity”.
If the procedure succeeds it may reduce lower limb spasticity, reduce the number of subsequent orthopaedic procedures, improve gross motor function, improve gait and walking and improve the child's level of independence and his or her quality of life.
It is important to realise that SDR is not a cure for cerebral palsy, but if the procedure succeeds it may help a child’s physical state by reducing muscular stiffness and improving a child’s mobility.
SDR is carried out while your child is under a general anaesthetic and the Great Ormond Street Hospital reports that the procedure takes around four to five hours.
Physiotherapy will be needed following surgery to obtain the best results. At first, this takes place in hospital and then at your home, usually with parents helping and participating. The NICE Guidelines point out that there is a chance that further surgery will be required.
Is SDR Suitable For My Child?
It is generally accepted that SDR is most suitable for children with spastic diplegia aged between three and twelve years of age. If your child is older, he or she may still benefit from SDR but may also need orthopaedic surgery.
To determine if your child is suitable for the SDR operation, he or she will need multi-disciplinary medical assessment, including Paediatric and Neurosurgical assessment, an MRI scan of the brain and X-Rays of the hips to confirm the stability of the hips.
SDR is a procedure that cannot be reversed and before it is tried, intensive physiotherapy and other treatments may be trialled, including treatment with injections known as botulinum toxin injections.
What Can Be Expected From The Procedure?
Children whose cerebral palsy is related to premature birth may have a good response to SDR. This is not the case for all causes of cerebral palsy and SDR is not suitable for all types of cerebral palsy.
According to Great Ormond Street Hospital:
“There is now enough evidence to demonstrate that SDR is associated with substantial long-term benefits. These are not only related to reduction in spasticity, but also relate to improved movement and walking as well as improved quality of life for both the children and their families”.
The NICE Guidelines state that:
“The non-randomised comparative study of 142 patients treated by the procedure or ITBP (intrathecal baclofen pump) reported that 94% and 96% of parents respectively were satisfied at 1-year follow-up”
How is SDR funded?
SDR surgery is a hot topic for the UK cerebral palsy community as although the NHS appears to offer the treatment there are problems with funding. However, it is available on the NHS and a number of the procedures have been funded by the NHS.
You should ask your doctor if your child can be referred to a hospital when their procedure can be carried out on the NHS.
Many procedures take place on a self-funded basis. Dr Park at the St Louis Children's Hospital in the US is the leading authority on SDR surgery.
However, UK Hospitals where SDR is available include:
- Robert Jones and Agnes Hunt Hospital in Oswestry
- Leeds General Infirmary
- Nottingham University Hospital
- Alder Hey Hospital, Liverpool
- Frenchay Hospital, Bristol
- Great Ormond Street Hospital, London
- The Portland Hospital For Women and Children
If you suffer from cerebral palsy or your child, a family member or a friend suffers from cerebral palsy then our team of experienced lawyers could provide support in obtaining information about the condition and about treatment by SDR. Click here for more information.
This article is based on the following sources and further information can be obtained from:
Article 2
SDR SURGERY: FROM THE PERSPECTIVE OF A FAMILY
by Staci Liversedge, October 2017
As set out in the first article, Selective Dorsal Rhizotomy (SDR) is a surgical procedure that may help children suffering from certain types of cerebral palsy and particularly those who have problems with leg movement. My colleagues and myself have been closely involved with a family whose little girl has recently undergone the SDR surgery. While the family wishes to remain anonymous, we have their kind permission to provide an outline of their story.
As with many families who have a child with cerebral palsy, for many years the family were not even aware of the existence of SDR surgery. They first became aware of it when, by chance, they saw a daytime television show which referred to the procedure. It is a sad fact that treating doctors do not always bring the SDR procedure to the attention of parents and their children who have cerebral palsy.
The television programme prompted the parents to carry out their own research. Their daughter suffers from a type of cerebral palsy involving bilateral spastic diplegia. As explained in the first article this type of cerebral palsy includes a loss of control in the leg muscles. This gave their daughter serious problems with mobility.
The parents soon discovered that their daughter seemed to be a candidate for the SDR procedure. However, before being considered for the surgery she had to undergo a trial of “botox” injections. The technical term for this is botulinum toxin injection therapy. It is used to treat dystonia, the condition that produces involuntary muscle contractions, especially of the leg muscles.
After the botox injections the parents were told that their daughter would be an ideal candidate for the surgery. The little girl in question was aged three at the time. She was unable to walk unaided or unsupported. Needless to say this was affecting her quality of life significantly. Her parents wanted to do all they could to improve her mobility and see her begin to walk.
Sadly, they were told that the SDR procedure could not be funded by their treating NHS Trust. They took it upon themselves to start a fundraising mission to pay for the surgery.
To start with, the possibility of raising enough money seemed unachievable. They were told that the cost of the SDR procedure would be £12,500. This had to be paid upfront. They were told that the rehabilitation in the first month following the surgery would cost £3,000. Following this there would then be extensive physiotherapy sessions a number of times a week. There would be frequent stays in residential physiotherapy clinics. They were told there was no guarantee of success and there were risks involved in the surgery.
They came to realise that they needed to raise funds in the region of £20,000 to £25,000. The prospect was daunting. They had their work cut out but were determined that they would raise the money required to give their daughter a chance at being able to walk. Family and friends rallied round. Raffles, quizzes and open days were organised. Through generous donations they eventually raised the money needed and the procedure went ahead.
When the surgery was being arranged, the little girl found it difficult to understand what was happening and why – however, she did not complain once!
It is now six months since the operation and it has been a tough six months. The family has been backwards and forwards to physiotherapy at least three times a week and has had frequent three day stays in a residential physiotherapy clinic. Most of the physiotherapy sessions are carried out by a physiotherapist specialising in Paediatric Neurology. This level of input needs to continue for at least twelve months after the operation, if not longer. Without this crucial follow up therapy, the full benefits of the operation will not be achieved.
The little girl has recently had her six month review. Her prognosis is positive. Even at this early stage, the results are noticeable. Her legs are less stiff. She can walk with a frame. The pain and discomfort which she used to experience have reduced. She still has a long road ahead of her but everyone involved in her care believes she will recover to the point where she can walk unaided.
Of course, the strain on the family has been considerable. There has been the stress of the fundraising, the risks involved in the surgery, the operation itself, the continuous care required after the surgery, and the residential and home based physiotherapy. However, this family feels that, even from the results seen so far, it has all been worth it. They are now waiting for the day when their daughter takes her first steps on her own.
The family sympathises with those families who may not be able to fundraise as successfully as they did. If successful, the surgery can significantly improve the quality of the child’s life. We agree with the family in question feel the SDR procedure should be available to all children who would benefit from it.
SDR SURGERY: FROM THE PERSPECTIVE OF A FAMILY
by Staci Liversedge, October 2017
As set out in the first article, Selective Dorsal Rhizotomy (SDR) is a surgical procedure that may help children suffering from certain types of cerebral palsy and particularly those who have problems with leg movement. My colleagues and myself have been closely involved with a family whose little girl has recently undergone the SDR surgery. While the family wishes to remain anonymous, we have their kind permission to provide an outline of their story.
As with many families who have a child with cerebral palsy, for many years the family were not even aware of the existence of SDR surgery. They first became aware of it when, by chance, they saw a daytime television show which referred to the procedure. It is a sad fact that treating doctors do not always bring the SDR procedure to the attention of parents and their children who have cerebral palsy.
The television programme prompted the parents to carry out their own research. Their daughter suffers from a type of cerebral palsy involving bilateral spastic diplegia. As explained in the first article this type of cerebral palsy includes a loss of control in the leg muscles. This gave their daughter serious problems with mobility.
The parents soon discovered that their daughter seemed to be a candidate for the SDR procedure. However, before being considered for the surgery she had to undergo a trial of “botox” injections. The technical term for this is botulinum toxin injection therapy. It is used to treat dystonia, the condition that produces involuntary muscle contractions, especially of the leg muscles.
After the botox injections the parents were told that their daughter would be an ideal candidate for the surgery. The little girl in question was aged three at the time. She was unable to walk unaided or unsupported. Needless to say this was affecting her quality of life significantly. Her parents wanted to do all they could to improve her mobility and see her begin to walk.
Sadly, they were told that the SDR procedure could not be funded by their treating NHS Trust. They took it upon themselves to start a fundraising mission to pay for the surgery.
To start with, the possibility of raising enough money seemed unachievable. They were told that the cost of the SDR procedure would be £12,500. This had to be paid upfront. They were told that the rehabilitation in the first month following the surgery would cost £3,000. Following this there would then be extensive physiotherapy sessions a number of times a week. There would be frequent stays in residential physiotherapy clinics. They were told there was no guarantee of success and there were risks involved in the surgery.
They came to realise that they needed to raise funds in the region of £20,000 to £25,000. The prospect was daunting. They had their work cut out but were determined that they would raise the money required to give their daughter a chance at being able to walk. Family and friends rallied round. Raffles, quizzes and open days were organised. Through generous donations they eventually raised the money needed and the procedure went ahead.
When the surgery was being arranged, the little girl found it difficult to understand what was happening and why – however, she did not complain once!
It is now six months since the operation and it has been a tough six months. The family has been backwards and forwards to physiotherapy at least three times a week and has had frequent three day stays in a residential physiotherapy clinic. Most of the physiotherapy sessions are carried out by a physiotherapist specialising in Paediatric Neurology. This level of input needs to continue for at least twelve months after the operation, if not longer. Without this crucial follow up therapy, the full benefits of the operation will not be achieved.
The little girl has recently had her six month review. Her prognosis is positive. Even at this early stage, the results are noticeable. Her legs are less stiff. She can walk with a frame. The pain and discomfort which she used to experience have reduced. She still has a long road ahead of her but everyone involved in her care believes she will recover to the point where she can walk unaided.
Of course, the strain on the family has been considerable. There has been the stress of the fundraising, the risks involved in the surgery, the operation itself, the continuous care required after the surgery, and the residential and home based physiotherapy. However, this family feels that, even from the results seen so far, it has all been worth it. They are now waiting for the day when their daughter takes her first steps on her own.
The family sympathises with those families who may not be able to fundraise as successfully as they did. If successful, the surgery can significantly improve the quality of the child’s life. We agree with the family in question feel the SDR procedure should be available to all children who would benefit from it.
We would welcome your views regarding SDR surgery generally, any experiences you have had from this and the availability of the procedure through the NHS. Email info@cerebralpalsy.org.uk
