Cerebral Palsy and Spasticity: 

Cerebral palsy occurs when a child sustains a brain injury very early on in life. Although the brain injury is static, its effects change continuously in the growing child. The commonest cause is premature birth. This causes damage to some of the bundles of nerve fibres in the brain, particularly the motor nerves that control leg movement. These nerve fibres run down from the brain to the spinal cord and control contraction of the limb muscles. If these fibres are damaged, the limb muscles contract too much and become stiff. This stiffness, or spasticity, interferes with children's ability to move and to learn to walk. Spasticity also causes pain, and, over time, shortening of muscles and tendons, joint contractures and severe deformities.

One of the patterns of muscle stiffness in cerebral palsy is spastic diplegia. This predominantly involves the muscles of the thighs, legs and feet. Nerve fibres running from the muscles back to the spinal cord play a major role in maintaining this excessive muscle stiffness.

There are a range of spasticity treatment options available at Bristol Children's Hospital. The multi-disciplinary team will assess your child and discuss the suitability of these options with you.
These include:

• Physiotherapy and Occupational Therapy
• Orthoses
• Oral drugs
• Botulinum Toxin
• Intrathecal Baclofen
• Selective Dorsal Rhizotomy
• Orthopaedic Surgery

For more information on spasticity management for children with Cerebral Palsy follow the link to the NICE guidelines:
https://www.nice.org.uk/guidance/cg145

(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.)

What is Selective Dorsal Rhizotomy (SDR)?

SDR was first performed in the early 1900's, when complete division of all the nerve roots to the lower limbs was performed. Although this did lead to improvement in spasticity, it also caused severe muscle weakness, as well as loss of skin sensation and joint-position sense. The current technique, in which only those nerve rootlets that contribute most to the spasticity are divided, was introduced in 1978.

The current technique involves surgery in the lower back. The procedure is performed under general anaesthesia and takes around 4 to 5 hours. The technique we use is the same as that developed in St Louis in the USA, which concentrates on the lower part of the spinal cord - increasing its effectiveness and reducing risk.

A skin incision is made in the upper lumbar spine. The spinal canal is opened at only one level. An ultrasound probe is used to identify the lower end of the spinal cord. The tough tissue covering the spinal cord is opened and the lower end of the cord, with the sensory roots attached, is identified. Each of the sensory nerve roots is then subdivided into four or five rootlets. The rootlets that contribute most to the spasticity are identified by sequential stimulation and are subsequently divided. Between 66% and 75% of these nerve roots are divided during the procedure. The procedure is performed under the operating microscope. At the end of the procedure, the cover of the spinal cord is closed again, the back muscles are re-approximated and the skin is closed with absorbable sutures.

(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.)

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.)

 

 

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.

Image shows leg gaiters

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.

Image shows foot splint

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.

Image shows child standing in parallel bars

(This photos is for equipment example purposes only, a patient was not used in this photo.)

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!

Image shows standing frame, functional electrical stimulation and trike

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.

(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.)

 

 

Funding of SDR

SDR surgery is now funded by NHS England for children who meet the following criteria:

• The child is aged 3 years to 9 years inclusive with a diagnosis of cerebral palsy with spasticity mainly affecting the legs;
• The child has dynamic spasticity in lower limbs affecting function and mobility and no dystonia;
• The MRI brain scan shows typical cerebral palsy changes and no damage to key areas of brain controlling posture and coordination; *
• The child functions at GMFCS level II or III; see below for more about GMFCS.
• There is no evidence of genetic or neurological progressive illness;
• The child has mild to moderate lower limb weakness with ability to maintain antigravity postures;
• The child has no significant scoliosis or hip dislocation (Reimer's index should be <40%)

* The typical MRI changes are those of white-matter damage of prematurity or periventricular leucomalacia (PVL).
* Lesions in basal ganglia or cerebellum are contra- indications to SDR, since they are associated with other cerebral palsy types (dystonia /ataxia).

The NHS England funding package includes a fixed amount for community NHS teams to provide a set level of post op rehabilitation for 2 years. The amount funded is based on GMFCS level. Please note this cannot be used to pay a private therapist. Please ask the Physiotherapy team for more details should you need them.

If your child is not eligible for NHS funding however the MDT considers that SDR is an appropriate treatment option for your child, then you will be told. In this circumstance, you have the option to self-fund the SDR assessment and treatment process. The care of your child will be the same as if they were NHS funded, including being on an NHS ward.  

The above information is taken from the NHS England Guidelines:

https://www.england.nhs.uk/wp-content/uploads/2018/07/1769-selective-dorsal-rhizotomy.pdf 

For more information Gross Motor Function Classification Score (GMFCS) Levels, please visit the Can Child Cerebral Palsy website for more information.

(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.)

 

 

Suitability for Selective Dorsal Rhizotomy (SDR)

Children between 3 and 10 years of age, with a diagnosis of spastic diplegia, following premature birth, should be considered for Selective Dorsal Rhizotomy. Older children are also considered on a case by case basis.

Children with typical spastic diplegia, whether born prematurely or at term, should also be considered. There should be no significant damage to the areas of the brain involved in posture or coordination; this would be determined by a magnetic resonance scan of the brain.

Children suitable for SDR need to demonstrate adequate muscle strength in the legs and trunk. Their ability to support their full weight on their feet, to hold their posture against gravity, and to make appropriate movements to crawl or walk is evaluated. These children tend to have delayed motor development, and spasticity interferes with their progress.

Regular post-operative physiotherapy is necessary to obtain the best results after  SDR  and suitable children need to be motivated and show that they are able to cooperate with therapy. Although it is ideal that children undergo SDR prior to orthopaedic surgery, if the latter has already been performed, it is recommended to delay SDR by at least six months to allow muscle strength to recover.

Some causes of cerebral palsy are not suitable for SDR. Children who have a history of meningitis, congenital infection, hydrocephalus unrelated to prematurity or head trauma do not do well with  SDR. Similarly, children with severe muscle rigidity, poor muscle tone or dystonia do not benefit from SDR. SDR is also not very effective for children with severe cerebral palsy involving the whole body or when one side of the body is very weak. In children with severe scoliosis,  SDR  is not generally recommended as it may cause the existing spinal curvature to deteriorate.

How to find out if SDR is the best option for your child

The first step is to obtain a referral for your child from your GP, paediatrician, orthopaedic surgeon or neurologist. On receiving this, we will first organise an appointment to see you with your child at the neurosurgical spasticity clinic with a consultant neurosurgeon and specialist physiotherapist. At this clinic, the benefits and potential risks of SDR  are discussed. We would also aim to have a full and frank discussion about your expectations, the consideration of other options and the need for post-operative physiotherapy.

Following that appointment, your child may well be referred on for a formal physiotherapy evaluation. Part of the evaluation is video recorded. You will also be invited to attend the nearby 3D Gait Lab, and we will arrange for these appointments to take place on the same day. This information then forms the basis of a further multidisciplinary team (MDT) discussion, attended by a paediatric neurosurgeon, paediatric orthopaedic surgeon, paediatric neurologist and specialist physiotherapists. At this stage, the brain scans, as well as the spine and hip x-rays, are reviewed. The aim of this meeting is to decide whether a child is suitable for SDR or whether other options may be potentially better. The neurosurgeon on the panel will be in touch following the MDT to discuss the outcome of the meeting and the recommendations the group have made.

(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.)

 

 

What SDR Can Achieve

SDR unmasks the leg weakness inherent to cerebral palsy. Although reduction in spasticity is immediate after the procedure, it takes time for the strength in the lower extremities to return.

Through the physiotherapy programme, the child will learn to use his or her body in a new way. Many children develop hypersensitivity in the soles of their feet after surgery; this is transient and will improve on wearing thick socks. There may also be a transient bladder disturbance; this may cause a change in toilet habits and could be frustrating for both the child and the parents. It will become apparent with time that lower limb movement becomes easier and the level of control, dexterity, range and speed increases, although it may take up to two years for the full benefit of the procedure to become apparent.

There is now enough evidence to demonstrate that SDR is associated with long-term benefits. These are not only related to reduction in spasticity, but also relate to improved movement and gait and improved quality of life for both the children and their families.

Following a period of commissioning through evaluation where 120 children underwent SDR and were followed up for 2 years, NHS England decided to routinely commission SDR for certain children with Cerebral Palsy. Bristol Royal Hospital for Children are delighted to be one of the centres providing this service. For information please see the NHS England website: 

https://www.england.nhs.uk/publication/selective-dorsal-rhizotomy-for-treatment-of-spasticity-in-cerebral-palsy/

(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.)

 

 

Questions?

 

How likely is it that my child's operation is cancelled?

Unfortunately there are a few reasons why your child's surgery might be postponed, including at short notice. SDR is performed as a routine surgical admission. If an urgent neurosurgical case arises or a bed is not available, SDR cases may need to be cancelled. We appreciate how stressful this can be for the child and the whole family and will always do our best to reschedule as soon as possible. On the day of the surgery you need to call Bed Management to ensure a bed is available. This team can be contacted by calling switchboard on 0117 923 0000 and asking for them to bleep 3217.

How many parents can stay by the bedside?

Please check latest guidance around Covid-19 and hospital visitor guidance. One parent/carer can sleep in a drop down bed next to their child on the ward. If 2 parents/carers will be present then you will need to arrange your own accommodation for the second parent/carer until your child is discharged and you move to your hospital booked accommodation as a family. Please contact the family information room if you would like to talk about accommodation options on 0117 342 8065. Hospital visiting hours are limited to 2pm- 8pm for extended family and friends, while open visiting is permitted for immediate family.

Will my child be in pain following the surgery?

Your child will be prescribed regular pain medication following surgery; ibuprofen, paracetamol and gabapentin which is for nerve pain. If you are concerned that they are in pain, please speak to your named nurse.

What is there to keep my child entertained in hospital?

Whilst an inpatient on the ward, there is a school room which your child will be able to access. There are also 2 play rooms; one on the ward and one just next to it on level 5. There are various computer consoles, games, DVD's and toys that your child can use whilst on the ward. We also have a range of different toys that we use during therapy to help make sessions more fun for your child. Wi-Fi is available free at the hospital. (Please note: some of this is information is subject to change due to Covid-19 infection control guidelines to keep everyone as safe as possible. Ask a member of staff for more information.)

Is there a hospital school?

The hospital school is based on level 5 next to our SDR rehab gym. They deliver daily lessons (on weekdays during term time) both in the school room and around the hospital. Siblings of children from outside of Bristol are also welcome to take part in lessons and activities in the school room. The aim is to enable the continuity of education for children whilst they are in Hospital. For more information please see our website. 

Will my child need to use a standing frame?

In addition to your therapy sessions, your child will need to use a standing frame for an hour each day. This gives them a prolonged stretch of their hips, knees and ankles. We will show you how to safely transfer your child in and out of the frame. Our standing frame come on wheels and therefore your child is free to explore the public areas of the hospitals when they are in it.   The school room and play rooms are only accessible whilst your child is an inpatient at the hospital.In between your therapy sessions you are welcome to remain in the hospital in the public areas e.g. the cafeterias, ground floor reception area. You are also free to return to your hotel if you wish to.

What should I bring with me?

• Wheelchair - your child will require a wheelchair even if they do not normally use one. Let us and your local Physio's know as soon as possible if your child does not currently have a wheelchair. If you do not have one available to you, we may be able to loan one for use during your inpatient and rehabilitation phase, however you will need one to help get your child home following their rehab.
• Gaiters - if you have your own pair then please bring them into hospital with you.
• The walking aids that your child normally uses e.g. walker, sticks or crutches.
• Favourite toys
• If you have a tablet or portable DVD player it is useful for keeping your child entertained during bed rest and in between therapy sessions/in the evenings. Lots of parents have found bringing a swan neck gadget holder useful for fixing the tablet to the bed in a good position for their child.
• Long socks to wear with splints.
• Loose fitting, cool and comfy clothes. It can be warm on the ward and during physio sessions so consider shorts and T-shirts.
• Your child's current footwear is unlikely to fit their new splints but is worth bringing with you in case it does. We recommend waiting till you get your new splints before buying any new footwear that they will fit in. There are lots of shops within walking distance of the hospital. There are plaster shoes that you can borrow to wear over splints until you have a chance to purchase your own
• Hot drinks are required to be in cups with a lid on the ward so remember to bring a reusable cup for tea/coffee for yourself!

What the hospital will provide?

• Gaiters (if you do not have them)
• Standing frame for use during rehabilitation at the hospital.
• AFO splints
• A walker for use during rehabilitation at the hospital (if your child doesn't have one).

Where can we eat meals?

There is a parent kitchen which you can use when your child is on the ward with a fridge for storing food and a microwave. Some parents choose to bring a travel fridge for use when staying at the hotel so that they can have basic meals in the room. Don't forget plates and cutlery! Sandwich spreads that don't need to be refrigerated are handy!

There is a café on the ground floor of the Children's Hospital. The Café in the BRI Hospital next to the Children's Hospital, has lovely views over the City and you can eat a picnic in there. Costa, WH Smith, M&S and Boots are all located in the BRI. Locally within walking distance of the hospital are a Tesco Local, Sainsburys and Greggs together with a wide range of cafés and restaurants. Bristol is a hilly city so it can be tiring when pushing a wheelchair. There are also a wide range of Deliveroo and Just Eat options available, and Domino's also deliver. Go on line to check for discount vouchers - Beefeater (connected to Premier Inn Lewins Mead) often have vouchers.

Which hotel will we stay at?

Following discharge from hospital after the first week, we are able to provide hotel accommodation, should you require it, for the remainder of your child's rehabilitation while they are attending the hospital as an outpatient for physiotherapy.  Where possible you will be provided with a family room, which will contain sleeping accommodation for two adults and your child.  This is accommodation only and does not include meals or additional services such as laundry or Wi-Fi. 

Paula, our SDR Coordinator (contact details can be found at the bottom of this page), will book you into the nearest Premier Inn to the hospital that has availability. Lewins Mead is the preferred option. If they do not have availability during the dates required, you may find that your accommodation is further afield.  We will always try and book the closest hotels in the first instance but this is not always possible and families are required to provide their own transport to and from the Hospital. Paula will discuss this with you once the reservation is confirmed. Try asking for a late check out on your last day to make packing the car easier.

Where can I park my car?

A disabled badge allows you to park for free in any hospital space whether a designated disabled bay or not however Hospital parking is limited. A weekly car parking pass costs £3.40. This is available from the ward whilst your child is an inpatient and from the Main Reception desk or LIAISE office in the ground floor reception area when you are staying at the hotel. If you have a blue badge, Lower Maudlin Street which runs down past the Eye hospital to Lewins Mead Hotel has a number of bays where you can park using a blue badge; check carefully as it's not the whole street. Some Premier Inns have drop off facilities for when you leave and arrive, however please check this dependent on which hotel you are booked into.

When can my child shower/bath?

You will need to limit bathing to sponge baths and keep the scar site completely dry for the first 2 weeks. The nurse practitioner will then check your child's wound. If it is healing well you can get it wet from this point. Resuming swimming and hydrotherapy is from 3-4 weeks post surgery date.

What equipment should we buy for rehab at home?

The most important thing is to make Physio as fun and interesting for your child as possible to help keep them motivated. Buying games that they will enjoy and you can incorporate into therapy sessions is often a better use of money than more expensive rehab equipment. Depending on your child's age, sticker reward charts or 'earning' point towards a reward each week can be motivating. For older children having a 'pass' card which they can use once a week when they choose to have an evening off   a therapy session at home can help give your child some control and help improve overall compliance of exercises with you.

Rehab equipment ideas, check with your local therapy team what they might be able to loan you. Lots of families sell items second hand on Facebook etc:

• Therapy mat
• Therapy bench - adjustable height
• Wheelie stool for parents/therapist
• Gym ball
• Wobble cushion
• Target games
• Balloons/balls/beanbags/skittles
• Treadmills - these take up a lot of space and are very useful for some, but not all children; talk to your Physio if you are considering buying one.
• Ijoy - an electronic seat that simulates horse riding and is aimed at increasing core strength. These also take up quite a bit of space and similar activities can be done on a gym ball. 

How much physiotherapy delivered by a Physiotherapist is recommended in the community following SDR?

In addition to the home exercise program that your child will perform daily with you, the following frequency of sessions with a Physiotherapist are recommended.

GMFCS Level II

• Hospital discharge to 4 months post-op: 2 times per week
• 4 to 6 months post-op: once per fortnight
• 6 to 12 months: once every 3-4 weeks
• 12-24 months post-op: monthly or as required

GMFCS Level III

• Hospital discharge to 4 months post-op: 3 times per week
• 4 to 6 months post-op: once per week
• 6 to 12 months: once per fortnight
• 12-24 months post-op: once per 2-4 weeks or as required

What is it like getting back to normal life?

The time in Bristol following SDR surgery can be a bit of a bubble. Getting back to normal life can be emotional for both children and parents. Often there is a natural dip in rehab progress and motivation as you get back into a new routine. Don't worry, this is completely normal. Returning to school after SDR is entirely individual.  Due to tiredness and initial loss of mobility children often start going back on reduced hours.  It may be worth talking to your school and local physiotherapist and planning for this. 

Lots of children have temper tantrums or fluctuating mood. Rehab schedules can be exhausting; talk to your local team about your schedule and make sure to have plenty of rest time where they can 'be a child'. Consider reducing therapy sessions in line with normal school holidays for half terms, Christmas and Easter breaks. Continuing with stretching and therapeutic activities such as swimming and horse riding, but taking a break from Physio led sessions during these weeks will allow for essential rest time for your child. 

Contact us

If you need to speak to a  Selective Dorsal Rhizotomy coordinator please email Paula Wilkins using the following address: Paula.Wilkins@UHBW.nhs.uk or call: 0117 342 8585

(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.)