Cerebral Palsy
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Questions about SDR

nancybeaunancybeau Member Posts: 4 Listener
edited January 2020 in Cerebral Palsy
Hi my little girl is nearly 5 and has diplegic cerebral palsy gmfc 3 can someone help me with questions I have about selective dorsal rhizotomy (SDR) please thank you :) 

Replies

  • Ami2301Ami2301 Community Co-Production Group Posts: 7,760 Disability Gamechanger
    Welcome to the community @nancybeau please forgive me, I don't know much about Cerebral Palsy, apart from a few symptoms. Is SDR related to the condition?
    Disability Gamechanger - 2019
  • nancybeaunancybeau Member Posts: 4 Listener
    I’m sorry no it’s a type of surgery cerebral palsy children can have and I’m thinking about getting it for my daughter but I’m extremely worried and have a few questions about the procedure xx
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,760 Disability Gamechanger
    No need to apologise, I was just checking as I wasn't sure :) I will tag our lovely Cerebral Palsy Specialist Information Officier @Richard_Scope and our fabulous community officier @Chloe_Scope as they both have Cerebral Palsy and may or may not have some knowledge with regards to the procedure.

    I can imagine this must be a stressful decision for you, in the meantime, we are here to listen and do what we can to support you :)
    Disability Gamechanger - 2019
  • nancybeaunancybeau Member Posts: 4 Listener
    @Ami2301 thank you so much 😊 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,760 Disability Gamechanger
    You're very welcome :) 
    Disability Gamechanger - 2019
  • chiariedschiarieds Community Co-Production Group Posts: 9,258 Disability Gamechanger
    Hi @nancybeau - Welcome to the community from me too. There's some information on SDR here on Scope's website. Please see: https://www.scope.org.uk/advice-and-support/selective-dorsal-rhizotomy/ However, the members of the Scope team whom Ami mentioned may be better able to advise. :)

  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @nancybeau and a warm welcome to the community! I have not had SDR but I do know a few people that have. I will move your question into the cerebral palsy category and I hope that will help.

    What kind of questions were you wanting to be answered? :) 
    Scope

  • Richard_ScopeRichard_Scope Posts: 2,840

    Scope community team

    edited January 2020
    Hi @nancybeau
    It's really good to meet you.

    SDR is a surgical procedure that aims to reduce muscle tightness and stiffness in the legs by cutting and separating nerves in the back.
    It is mostly carried out on children with Spastic Diplegia (2 limbs affected) between the ages of 4 to 10 years after assessments for suitability have been carried out.

    Really happy to answer any of your questions :smile:

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • nancybeaunancybeau Member Posts: 4 Listener
    Hi @Richard_Scope thank you for getting back to me, I don’t think my daughter will pass for the nhs Treatment treatment but we may go private as beau can’t walk and I want to do anything I can to give her that opportunity but I was just wondering is it dangerous? Does she get put out or what risk are there of loosing her I’m so panicked and worried I don’t want to go ahead with it without knowing everything 
  • Richard_ScopeRichard_Scope Posts: 2,840

    Scope community team

    edited January 2020
    Hi @nancybeau

    Your daughter will still need to be assessed for suitability. Like any medical procedure, SDR can carry risks. It will not suit all children with Cerebral Palsy. Some will benefit and some may see no benefit or their condition may even deteriorate. You should always discuss potential risks and side-effects with your child's surgeon. 

    Permanent Risks are rare but include:

    Temporary altered sensation although permanent numbness is rare 

    Constipation and urinary retention 

    Back pain 

    Weakness in the legs 

    Discouragement in the patient due to the length of therapy 

    SDR can highlight weaknesses elsewhere. For example, where muscles working alongside the spastic muscles have adapted to compensate for the increase in muscle tone. 

    It is vital that seek the opinions of medical professionals when considering the benefit/risk for your daughter and I would always get more than one opinion.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Richard_ScopeRichard_Scope Posts: 2,840

    Scope community team

    Hi @nancybeau
    How are you? 
    Did you decide to go forward with the SDR assessments?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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