Questions about SDR
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nancybeau
Community member Posts: 4 Listener
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
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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
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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
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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 youDisability Gamechanger - 2019 -
@Ami2301 thank you so much ?
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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.
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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 -
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
Scope
Specialist Information Officer and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
Want to tell us about your experience in the community? Talk to our chatbot and let us know. -
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
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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 and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
Want to tell us about your experience in the community? Talk to our chatbot and let us know. -
Scope
Specialist Information Officer and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
Want to tell us about your experience in the community? Talk to our chatbot and let us know.
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