SDR: the who what and why…

We arrived in the world of Cerebral Palsy with a pretty rough landing. Unanswered questions, lack of professional medical guidance, delays in appointments…unfortunately we were to discover this pattern was the norm. We elected, as many parents do, to channel the tumult of emotions into finding out about the condition and if anything could be done to help our wee daughter through her life with it.

Gradually we narrowed down treatment and intervention choices based on our daughter’s particular needs, her character, mobility issues. SDR, something we had not heard of prior, was being performed on children as young as Caitlin was then (2 years) by a Dr TS Park with astounding, semi-miraculous results. Over 2000 ops successful, no fatalities, minimal scarring, two had complications that had been resolved. Wheelchair-bound children and teenagers were leaving their wheelchairs behind, were learning to run and jump. Most important to us was the lack of need for further operations such as orthopedic lengthening of tendons/muscles as the body grows within confines of over-tone. This appeared to be just what we were looking for to help Caitlin who was not walking or standing, could not sit up well due to the tone in her hips and legs.

Later that year we discovered that, in May 2011, Consultant neurosurgeon Kristian Aquilina was about to perform the 1st SDR operation in the UK at the Frenchay Hospital, Bristol, another minor miracle.

The biggest miracle was yet to come however as Caitlin – quite possibly the most determined, single-minded child this side of the sun – had started to take her first upright unaided steps. This amazed us, just watching her will herself to stumble between the living room furniture. She soon progressed this but the limitations of her toned legs is still very apparent. We have a way to go…

Below is an amalgamation of snippets that we hope will provide an idea of the operation and the considerations that ought to be undertaken.

Spasticity
Many patients with Cerebral Palsy (C.P.) have tightness/spasticity in the muscles of their arms, legs, and trunk. Spasticity can decrease the speed of movement, limit flexibility, and interfere with the development of walking. Over time, contractures (fixed tightness) of the joints and deformities of the bones can develop from continuing spasticity. Selective Dorsal Rhizotomy can reduce this spasticity.

Causes of Spasticity
The tightness of a muscle is called muscle tone in CP. The brain tells the spinal cord how much tone or tightness each muscle should have. This message is sent by the sensory nerve fibers. The feedback from these sensory fibers to reduce muscle tone must be well coordinated in the spinal cord for muscles to work smoothly and easily while keeping their strength. The brain of a patient with C.P. is unable to clearly send the command because of injury/damage at an early age or before birth.

Selective Dorsal Rhizotomy
An operation called Selective Dorsal Rhizotomy reduces the muscle tone in patients who have Cerebral Palsy. Lasting 4-5 hours, each sensory nerve rootlet is stimulated electrically to identify those roots involved in spastic tone, after which the abnormal roots are cut. The remaining roots which send correct messages are left whole and remain functional. Simple! Here is some more on it from the source.

Who Can Benefit
A small percentage of patients with Cerebral Palsy can benefit from this operation. The following may be used as guidelines to determine who may be a candidate for surgery.

Age:Usually two years and older

Type of C.P.:Spastic Diplegia or Quadriplegia

Past History:Often have a history of premature birth

Cost:

US £50-£60k (including a month’s worth of post op rehab but this must be continued by physiotherapists at home)
UK £24-£30k (not including the necessary aftercare and intense therapy)

Locations in UK:

  • Frenchay Hospital, Bristol
  • Leeds General Infirmary
  • Alder Hey Hospital, Liverpool
  • Nottingham University Hospital

Condition:

  • Difficulty walking because of spasticity;
  • Adequate muscle strength;
  • Had no previous orthopaedic surgery or who may need repeated orthopaedic surgery due to continued spasticity

Therapy:Can actively participate in physical therapy and respond to requests of the physical therapist

Family:Families can provide follow-up physical therapy two to five times a week for one year post-operatively.

Where and how is SDR available?

Since 1988, SDR has been available through the orthopaedic team at the Robert Jones and Agnes Hunt Hospital in Oswestry. The technique practised here is via a multi-level approach, different from the single level approach being practised by Mr K Aquilina in Bristol, or the other UK centres. These centres have based their technique on that of Dr TS Park at ST Louis Hospital in Missouri.

Since 2011, a number of British paediatric neurosurgery centres have started offering SDR surgery through the single-level approach. Some cases have been NHS-funded, others self-funded through the NHS hospital treatment top-up scheme.

If your child is attending a UK hospital, the hospital will usually make an application for funding to the Primary Care Trust. NHS funding may be granted in full or part or declined in which case the procedure may still go ahead but parents will be asked to find the funds. However, the costs will still be less than accessing SDR in the USA and follow up physiotherapy and monitoring of your child can be more easily accessed.

The centres in the UK offering SDR via a minimal access single-level approach in the UK are:

  • Frenchay Hospital, Bristol
  • Leeds General Infirmary
  • Alder Hey Hospital, Liverpool
  • Nottingham University Hospital

Over the past few years a number of UK children have also undergone SDR surgery in America at the St Louis Children’s Hospital under the care of Dr TS Park and his team. This treatment is provided on a private-patient basis and can have substantial costs associated with it.

“SDR is not a miracle cure by any means but is a huge step on the road towards some form of independence.” Parent

Who May Not Benefit
Certain conditions may prevent a child from a being suitable candidate, including:

  • Multiple orthopaedic surgeries on hips, knees and ankles
  • Fixed contractures
  • Diagnosis of mixed C.P. or athetosis, ataxia, or dystonia
  • Severe Scoliosis

Pre-Operative Evaluations
First, a written referral from a GP should be submitted on behalf of the PCT to the Neurosurgeon team.

Each child is evaluated to help determine appropriateness for Rhizotomy surgery.

Clinical Evaluation/Assessment
Each child patient and family will meet with the neurosurgeon, neurologist, orthopaedist, and physical and occupational therapists. You have to bring all equipment such as braces, crutches, and walkers used for mobility.

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