SDR at GOSH anyone?

ShowPony
ShowPony Community member Posts: 1 Listener
edited January 2018 in Cerebral Palsy Network
Hi there!
Is there anyone who has had SDR surgery in GOSH, and could share some experiences? We are just looking for options for our 2.5yo. 

Comments

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    Hi @ShowPony, and welcome to the community! 

    I wonder if @SarahJones, EvanJosMam or @jake2008 could offer any advice from their own experiences?
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,604 Championing
    Hi @ShowPony
    Im sorry there hasnt been more of a response to this, you can find more information about SDR surgery here though.
  • p_parmar2018
    p_parmar2018 Community member Posts: 2 Listener
    Hi Our daughter had SDR procedure back in September 2014 at GOSH. Dr Aquilina performed the surgery. Our daughter Ganaya pre SDR walked using a kaye walker and is diagnosed diplegic CP. She was initially assessed back in December 2013 and told she would be eligible for surgery in January 2014. We had to raise the money for the procedure and given the date of surgery on Friday 5 September 2014. We went in for pre-assessment the day before and Dr Aquilina and the team were very reassuring and gave us lots of information.  Ganaya was aged 5 at time of procedure and following the surgery was seen by the physiotherapy team on the following Monday ready to start physiotherapy for the next two weeks each day. She continued her rehabilitation and she took her first initial three independent steps on the day she was discharged from GOSH. We continued her physiotherapy at the Cerebral Palsy Physiotherapy Centre in Flitwick, Bedfordshire and assessment with the GOSH team every fortnight. Although the team were very engaged with the treatment but was still new at the time and we as parents had to be pro-active and explain to them how we wanted progression and advise them on some specifics. We found that the aftercare and treatment available in St Louis by Mr Park was excellent as we had to take Ganaya to St Louis in April 2015 for procedure for her heel chords and left hamstring. The team and overall procedure they have in place is second to none compared to GOSH, but this always comes down to funding and budget. Overall, GOSH were good at the time however we have been discharged from the care as Ganaya is independently walking. I hope this helps and all the best

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