Questions about SDR

nancybeau

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  

Ami2301

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?

nancybeau

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

Ami2301

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

nancybeau

@Ami2301 thank you so much ? 

Ami2301

You're very welcome  

chiarieds

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_Alumni

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?  

Richard_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

nancybeau

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_Scope

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.

Richard_Scope

Hi @nancybeau
How are you? 
Did you decide to go forward with the SDR assessments?