Pathway at Bristol
Our Pathway:
Referral:
We can accept a referral for consideration of Selective Dorsal
Rhizotomy (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 SDR 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.
(This information can also be found within the paediatric neurosurgery
webpages.) (Please note some photos taken prior to
facemask policies being in place in hosptials.)