SDR How It Will Help Johnny

Selective Dorsal Rhizotomy (SDR) is a neurosurgical procedure which involves sectioning and cutting of some of the sensory nerve fibres that cause spasticity. The abnormal nerve rootlets are identified and then cut, leaving the normal rootlets intact. 

The results are permanent (spasticity or muscle tightness is irrevocably reduced) and when combined with an intensive physiotherapy post-op programme (and for some children additional orthopaedic surgery to lengthen muscles), can result in life-changing mobility improvements. 

For children who can already walk, this can result in independent walking without an assistive device. For children like Johnny, who are wheelchair-bound, this will mean the difference between a wheelchair all day vs. the freedom of being able to take his own steps with a walker. 

Although this surgery has started to become available in the UK, the acknowledged expert is the surgeon in the US, Dr Park (St. Louis hospital) , who has performed this operation over 2,500 times over the last 20 years – including over 100 children from the UK. We took Johnny to Bristol, one of the few UK hospitals offering this operation, earlier this year but unfortunately he doesn’t meet their narrower selection criteria. 

However, help is at hand. We have sent Johnny’s details and x-rays over to St. Louis and he has been accepted for surgery there. According to Dr. Park and his team, Johnny is a very good candidate for the rhizotomy surgery and we can expect the following improvements. 

  • His spasticity will be permanently reduced
  • His sitting and standing postures will improve
  • His transitions between postures will be easier and faster
  • His balance and level of comfort will improve
  • They feel that Johnny will be able to walk with a walker 

Due to these benefits: they strongly recommend that he has the surgery.

If Johnny doesn’t have the operation, he will undoubtedly face a lot of pain and discomfort. Without weight-bearing through his hips, his hips will undoubtedly dislocate further, he runs the risk of developing muscle contractures, ankle and foot deformities and back problems. Without SDR his muscles will continue getting tighter, more painful and uncomfortable and the constant tightness and lack of walking will cause him other problems with his bones and joints that will require considerable surgery in the future. 

The Costs

The surgery (SDR and Orthopaedic Surgery) costs c. £35k. However, we have set our target as £70k to cover the costs of the surgery in America but also 2 years of intensive physio afterwards.

It’s a scary amount of money to have to raise but we’re trying to think about it as not just a couple of people trying to raise £70k but 70 people trying to raise £1k each.

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