Useful Websites:

• Leeds Teaching Hospitals NHS Trust
• Neurosciences Intranet Page (Internal Use Only)
• Get Health Advice -
  NHS Direct
• The Society of British Neurological Surgeons
• eBrain

Medical Students:

Click here to visit the Leeds Neurosurgery Medical Student Pages, including handouts from previous teaching sessions.

Selective Dorsal Rhizotomy (SDR):

 

Welcome to our SDR page...

This page contains the basic information about Selective Dorsal Rhizotomy in Leeds, together with information sheets for patients & families, physiotherapists and medical professionals.

SDR has been performed with great success in Leeds since October 2012. We have performed >100 operations so far.

In 2014-16, the Leeds team was delighted to be Commissioned as an official SDR provider for the NHS Commissioning through Evaluation programme. This ended in March 2016.

On 5 July 2018 NHS England announced routine commissioning of SDR, with an initial decision that it would be delivered in the 5 centres involved in the CtE process, including Leeds. A formal procurement process is being planned.

The team in Leeds continue to accept new patient referrals. These are seen in a multidisciplinary spasticity assessment clinic. We assess patients for the full range of applicable spasticity treatments, so we are happy to accept referrals for NHS review.

If the clinic review suggests that SDR is a suitable treatment to offer, this is now provided as an NHS-funded treatment for children aged 3-9 years old.

Unfortunately the current NHS England pathway means that children aged 10 and over will not be routinely funded. However, for these children we offer a “self-funding” programme to UK NHS patients. These patients receive the SDR surgery and 3-weeks of post-operative physiotherapy at cost. We do not charge additional private-patient fees for this group of UK families.

For families outside the UK, full private patient fees are payable. Details of cost are available on application.

 

The Spasticity Team in Leeds

• Mr John Goodden - Consultant Paediatric Neurosurgeon
• Dr Raj Lodh - Consultant in Paediatric Neurorehabilitation
• Kate McCune - Highly Specialised Paediatric Physiotherapist
• Katie Davis - Highly Specialised Paediatric Physiotherapist
• Catherine Wilsmore - Highly Specialised Paediatric Physiotherapist
• Mrs Helen Bryant - Consultant Paediatric Orthopaedic Surgeon
• Ms Laura Deriu - Consultant Paediatric Orthopaedic Surgeon
• Ms Nicola Shackleton - SDR Coordinator
• Mrs Andie Mulkeen - Clinical Nurse Specialist for Spasticity
• Mrs Sharron Peacock - Clinical Nurse Specialist for Spasticity

Pre-Referral Guidance

Children over the age of two years with spastic diplegic cerebral palsy may be potential candidates for the selective dorsal rhizotomy (SDR) procedure. Care must be taken to ensure candidates will potentially benefit from the procedure due to its irreversible nature.  Please see Referral Assessment section below.

Referral Process

Referrals for consideration of the SDR procedure are accepted from Consultant Paediatricians, Consultant Paediatric Neurologists, Consultant Orthopaedic Surgeons, and GPs.  These referrals are discussed in the MDT Spasticity meeting before patients are listed for an outpatient appointment.  If further information is required this will be requested before the referral is finally accepted.

An initial patient assessment will be undertaken in an MDT clinic by a paediatric neurosurgery consultant, paediatric neurorehabilitation consultant and paediatric physiotherapist.  If SDR is deemed to be the most appropriate treatment, funding and costs can then be discussed. 

Please ensure your physiotherapist is aware and in agreement with the referral as long-term rehabilitation is essential.They will also need to completean assessment document and send it to us (see downloadable forms below).

Referral Criteria

1. Cerebral Palsy with spasticity mainly affecting the legs (aka Spastic Diplegic Cerebral Palsy)
2. Age 2 years and upwards*
   *Although NHS funding is only available for surgery for children aged 3-9
3. MRI shows typical cerebral palsy changes with no evidence of damage to key areas of brain controlling posture and coordination (cerebellum)
4. GMFCS Levels II-III - please see below RE: GMFCS IV-V
5. Definite dynamic spasticity in lower limbs affecting function and mobility
6. No dystonia
7. No evidence of genetic or progressive neurological illness
8. Mild to moderate lower limb weakness with the ability to maintain antigravity postures. The stronger the better pre op.
9. No significant scoliosis or hip dislocation

Please note these are referral criteria and not criteria that define definite suitability for SDR surgery.  Suitability for SDR surgery will be judged when the child is reviewed in the multidisciplinary spasticity clinic.

The Assessment & Clinic

We see children in a “multi-disciplinary spasticity clinic” – held on a Monday.  The clinic is run as an all-day clinic, with assessments in the morning and afternoon, so please come prepared for this.

Three separate appointments are given over the course of the day, so that detailed reviews can be undertaken by the Physiotherapy Team, the Paediatric Neurorehabilitation Consultant and the Consultant Paediatric Neurosurgeon.

We recommend you bring a pair of shorts for your child to wear during the Clinic Assessment.  Please also ensure that you bring your child’s splints, walking aids and wheelchair with you to Clinic as they will be required during the assessment.

Clinic Format:

The clinic format is that an appointment will be given in the morning for a detailed physiotherapy assessment. An MDT is then held during the middle of the day, when the patients assessed that morning are reviewed by the full team. Consensus MDT recommendations about treatment options are agreed during this meeting. The children & families are then seen in clinic in the afternoon by members of the team (usually Dr Lodh or Mr Goodden) to discuss the MDT outcome and treatment recommendations.

Where necessary, appointments are also made to see a specialist Paediatric Orthopaedic Surgeon, but this appointment may be at a later date.

Clinic Outcome:

Our current MDT clinic structure allows us to usually give each family an answer as to whether or not SDR is recommended by the end of the clinic assessment day.

The assessment may also find a need for orthopaedic surgery operations to be done after the SDR operation – for example, tendon lengthening surgery.  If this is felt to be necessary, arrangements will be made for a review by a specialist children’s orthopaedic surgeon before SDR surgery can be planned.

It is also sometimes necessary to recommend a period of muscle strengthening before SDR can be considered.  If this is the case, you will be given a repeat appointment and your physiotherapy team will be contacted to arrange the required physiotherapy.

If the clinic review suggests that SDR is a suitable treatment to offer, we will be able to confirm whether this will be covered by NHS England funding pathways at the time of the clinic appointment.

For those outside the NHS England funding criteria we can discuss our “self-funding” programme which is available for UK-based patients.

For families outside the UK, full private patient fees are payable. Details of cost are available on application.

SDR for GMFCS Level IV and V patients:

Selective dorsal rhizotomy for children functioning at GMFCS level IV or V is a difficult question, because the goals are very different than for GMFCS level II or III children.  Where GMFCS level II or III children are usually looking to improve their functional mobility, for children at GMFCS levels IV or V the goals are more centred around comfort and pain relief rather than mobility - as explained below.

One of the important things for children in this GMFCS IV category is that they often rely on their quadriceps tone to help them stand, and to allow them to undertake standing transfers.  SDR carries with it the likelihood of reducing the quadriceps tone, and therefore preventing standing transfers from being possible. This makes consideration of selective dorsal rhizotomy surgery much harder for this group, with a much greater likelihood that it would not be of benefit due to the loss of standing transfers. For these reasons, in general we tend to find ourselves recommending intrathecal baclofen therapy because it can be tailored to the child’s needs and can also be reversible if it is reducing their functionality.

These challenges are less with the GMFCS level V children as they tend to rely more upon hoist transfers, however they have other complex needs that again make an SDR decision challenging.

It is also our experience that children functioning at GMFCS level IV or V often have a more complex brain injury than simply PVL - one which involves the thalami or basal ganglia. This in turn means that they more frequently have other movement disorders such as dystonia. This is considered to be a contra-indication to proceeding with SDR.

Hopefully this helps in your understanding of the role of SDR for children functioning at GMFCS level IV or V. In principle we can review information in a formal referral but in general have found that it has not been the best treatment choice for these children.

Videos

Below are links to YouTube videos concerning SDR:

Further Information

For further information please contact:

Downloads: