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Pathway at Bristol

Our Pathway at Bristol

 

Referral:
We can accept a referral for consideration of SDR from your Paediatrician, GP, Physiotherapist, Neurologist, Orthopaedic Surgeon.


Spasticity Clinic:
You will see one of the Consultant Neurosurgeons and Specialist Physiotherapists in clinic at your initial appointment where they will discuss your child's areas of strength and difficulty and the different treatment options available for your child.  This can either be free on the NHS at Bristol Children's Hospital or a self-paying consultation at Litfield House, Bristol.
If SDR is felt to be a potential treatment option for your child; the consultant will go through the SDR procedure in more detail including the risk and benefits of the surgery. If this is a treatment that you would like to consider for your child, they will be invited back to the Hospital for a full SDR assessment to see if this surgery might be beneficial for them. Prior to this happening, Mr Edwards will need to review your child's brain MRI scan to ensure that they are a possible candidate. 


Full initial assessment:
The assessment process involves two separate appointments organised to occur on the same day. Please be aware you will need to travel across two sites in Bristol for the assessment and need to organise your own transport for this.

  • 3D gait lab at the University of West of England, Glenside Campus
  • Physiotherapy assessment at Bristol Royal Hospital for Children
  • Hip and spine x-ray if required


3D Gait Lab analysis:
3D gait analysis is a process by which information is collected about how your child walks. If walking is very difficult or not something that your child is able to do, they may not have had one of these done e.g. if they are GMFCS IV or V. 
At the lab your child will have little markers placed on their legs and will be asked to walk up and down whilst specialists cameras video their movements.  It is used to see how their body and joints move, whether their muscles are working at the right time and how much power they produce. Please ensure you bring any splints and mobility aids that your child uses to this appointment.
This provides valuable information for the doctors to ensure SDR is the right treatment. 


Physiotherapy initial assessment:
This assessment takes between an hour and a half and two hours at Bristol Royal Hospital for Children.  You will be seen by two members of the Therapy Team. They will ask you about your child's areas of strength and difficulty and what you hope they may achieve following SDR. Your child will need to lie on a bed while they assess the joint range, muscle tone and strength in their legs and trunk.
They will ask your child to do a few different activities on a floor mat.  They will video parts of the assessment to show at the MDT (multidisciplinary team) meeting.  They may ask your child to do some walking with and without shoes and splints on and video that too.  Your child will need to be wearing some comfortable shorts so that their knees can be seen. 
Your child will have a hip and spine x-ray on the day of assessment unless otherwise stated.
You may wish to bring a drink or snack for your child to have during this session to keep them going.


Multidisciplinary Team Discussion:
All the information gathered at the assessment will be discussed and the video footage viewed by the SDR Multidisciplinary Team (MDT) in a meeting.  There will be a Neurosurgeon, an Orthopaedic Surgeon, a Neurologist or Paediatrician with neuro-disability interest, a Specialist Physiotherapist at the MDT. 
The team will discuss the treatment options which could benefit your child. Bristol is privileged to be able to offer a range of treatment options including Botulinum toxin injections, Intrathecal Baclofen, orthopaedic surgery and SDR. A consensus will be reached on the next steps in treatment for your child.
After the MDT discussion a member of the team will call you to discuss the recommendations of the group and answer any of your questions. This will be followed by a letter detailing the assessment findings and MDT discussion, a program of pre-op exercises and information on what happens next. Please be aware there may be a short delay between your child's assessment and the next MDT meeting which are usually held monthly.
If SDR is an appropriate treatment option for your child and you decide to go ahead please contact the coordinator and we will add your child's name to the waiting list.


While on the Waiting List:
There are things you can be doing to prepare for surgery and rehabilitation:

  • Discuss with your local Physiotherapy team your post-op rehabilitation plan and consider private therapy to supplement this if required.  
  • Continue with your current physiotherapy programme. Supplementary exercises will be provided by the SDR Team via a leaflet with your MDT letter.
  • Keep using the splints/gaiters if your child uses them so that the muscles do not get tighter before surgery. 
  • Your child will require use of a wheelchair following surgery. If they already use one bring it with you to hospital. Please make sure this has been reviewed by your local team before admission. If your child doesn't have a wheelchair; we advise that you get in contact with your local wheelchair service to arrange this as soon as possible as there can be long waiting times. If timescales cause difficulty with this, you may need to organise hire of a wheelchair form an organisation such as the Red Cross.


Pre-operative assessment:

  • Prior to your child coming in for SDR surgery, you will be invited to a pre-op Physiotherapy assessment; the appointment lasts about an hour.
  • You will have the opportunity to ask any further questions that you may have about the procedure and rehabilitation process.
  • We will check we have the most up to date contact details (address, phone number, email) for your local NHS Physiotherapist and any private therapists working with your child; please bring these with you.
  • We will repeat some areas of the GMFM (previously completed at the initial assessment) and ask you to complete a quality of life questionnaire (CPQOL) to get an accurate baseline of your child's abilities just prior to surgery.
  • Your child will be cast for splints unless they are having a calf lengthening procedure as well as SDR.
  • You will be told when your child needs to fast prior to surgery and what they are allowed to drink.
     

SDR surgery admission:
Your child will be asked to have nothing to eat and not to drink milk from 02.30 am on the day of surgery. They may have clear fluids until 06.30 am.  Your child will be admitted to Bluebell ward at 7am on the day of the surgery and prepared for their operation. This is the ward you will return to after 2 nights on HDU following the surgery. Mr Edwards, Consultant Neurosurgeon, and the anaesthetist will meet with you to go through the consent process and answer any questions that you may have. Your child will be given pre-operative medications. They will be called to Theatre either in the morning or the afternoon, dependent on where they are on the theatre list. The surgery will last approximately 4-5 hours.  

The physiotherapists will take measurements of your child's joint ranges when they are under anaesthetic to check again for any limitations to movement (contractures).   The assessment findings are shared with the Orthopaedic Surgeons. If any contractures present will limit rehabilitation, further treatment options will be discussed with you. This may involve surgery or serial casting. If your child does need an Orthopaedic procedure with SDR, they will have an extra 2 weeks of outpatient therapy (totalling 5 weeks of rehab).
Following surgery your child will spend two nights on Daisy, the High Dependency Unit (HDU) before transferring to Bluebell, the neurosciences ward. Both of these wards are on level 5.


The Selective Dorsal Rhizotomy Procedure:
At Bristol we adopt a microneurosurgical approach to SDR.  This technique was developed by Dr T. S. Park in St Louis USA and Mr Edwards operates using exactly the same technique.
The neurosurgoen cuts 66 % of the sensory nerve roots in levels L1 to L4 and 75 % in L5 and S1 in the spinal canal, all the time using neurophysiological monitoring to identify which rootlets to divide and cut.  This ensures nerves to the bladder and bowel are always preserved.  The aim is to relieve spasticity from the lower limbs. The scar will be discreet at only about 1 inch long on the lower back. 

Complications following SDR are uncommon but include:

  • Infection
  • Leak of cerebrospinal fluid
  • Development of a fluid collection under the skin (pseudomeningocele)
  • Severe leg weakness
  • Incontinence

There are risks involved with general anaesthesia but these are also rare.  These will be discussed with you before the operation and you will be asked to sign consent forms to enable the procedure to go ahead.

What to expect after the operation:

  • Your child will have little pin-prick needle marks on their legs from where the EMG machine was used to test activity in the muscles in their legs during surgery.
  • They will have a small scar (approximately 3cm) in the middle of their back that will be covered with a plaster.
  • Your child is likely to complain of a headache and pain in their back.
  • Your child will feel tired and may feel a little anxious and frustrated as their legs will feel different to before the operation.
  • They will have some altered sensation of their legs and particularly their feet can feel more sensitive. This is common post SDR surgery and will improve initially with medication and then gradually reduce over time. To help you can hold their feet firmly, wear socks and try firm massage of the feet.
  • Your child may have a urinary catheter in place and a cannula.
  • On HDU (Daisy Ward) the nurse will perform observations on your child every hour including checking their hands and feet. As your child becomes more stable this is reduced to 2hourly checks, and then 4hourly checks. These 4hourly observations will continue until you are discharged from the hospital to the hotel.
  • Your child will have to remain completely flat; either on their front, back or side for 48hrs.
  • The morning ward round is done before 8am.
  • Lights out on the ward is 9pm, with quiet hours between 9pm and 6am.


What to expect from Physiotherapy:

Day 1 after surgery:
Your child will remain in bed resting for the first 48hours after their surgery. The physios will measure your child and provide gaiters if they don't already have their own. From Day 1 we ask for gaiters to be worn twice daily for 1hour to maintain length of hamstrings (and calf if worn together with AFO's). They won't do any other physiotherapy exercises this day.

 

Day 2:
The first session will be at the bedside. The Physio's will assist your child in sitting up over the edge of the bed for the first time. They will assess their core and leg strength in this position. Your child is likely to feel some dizziness following the bed rest and they may also feel anxious due to their body feeling different. A bed exercise programme will also be provided. We ask for these exercises to be completed twice daily in addition to the physiotherapy sessions.


Day 3:
The Physio's will help your child transfer from bed to chair and they will sit in their chair for minimum 45 minutes depending on fatigue. Your child will have an orthotics appointment to fit their splints; this is usually on Day 3. These splints will need to be worn when your child is sitting out, along with their shoes. The urinary catheter will be removed on day 3 or 4.


From Day 4:
Your child will have 2 scheduled Physiotherapy sessions on each weekday. They will do their first stand in a physiotherapy session. Ask the Physio's how much standing and stepping your child should be doing with you on the ward and then at the hotel as this usually progresses quite quickly.  The cannula is usually removed on day 4 or 5. If your child is unwell this may be delayed.


From Day 5:Outpatient rehabilitation:
Paula, our SDR co-ordinator, will book for you to stay in a local hotel for your outpatient rehabilitation phase once discharged from the ward. This discharge usually happens around a week after surgery, unless they have also had orthopaedic treatment. For example, those who have surgery on a Monday will be discharged from the ward on the Friday, providing that they are safe for you to transfer in/out of their wheelchair. Most children undergo a further 2 weeks of twice daily Physiotherapy.


Day 6-15 Outpatient rehabilitation:
Your child will usually have 2 Physio sessions each weekday for up to an hour at a time; one in the morning, and one in the afternoon. You will be given a therapy timetable each week of when your child's Physio sessions will be. Please note that therapy sessions are only on weekdays and not on bank holidays. These sessions depend on the other children undergoing rehabilitation at the same time, other clinical activity and staffing levels. Session times are subject to change but wherever possible will stay as timetabled. If there are any special considerations that you would like us to know about when scheduling therapy; please do tell us!


Discharge to community team:
Your last therapy session is on the Thursday afternoon of your second week of outpatient rehab. This day will comprise of a rehabilitation session and a discharge summary session. We will provide a detailed discharge report, an exercise programme and a therapy protocol for you to take away with you to give to your local therapy team.