CP & surgery

MilliganHermione

Hello,

I'm new to the forum. My husband (37) has Spastic Diplegic CP and is independent. He's been talking to surgeons about possible ankle surgery (fusion etc) to straighten up his ankle.

Does anyone have any experience/advice around this? Can anyone recommend any good surgeons in the South East of England who have experience with CP?

Thanks,

MilliganHermione

SaraC_Scope

Hi @MilliganHermione

Welcome to the community. This is a great space for advice and support.

I'm part of the CP Network with Scope and the team have an important role supporting the cerebral palsy community. @Richard_Scope who is the Cerebral Palsy lead has a wealth of knowledge and it might be a good idea to connect with him.

We also run the Cerebral Palsy (CP) Network | Disability charity Scope UK

You can join monthly meetings where network members get together.

These meetings are hosting on online using Zoom, and take place on Wednesday evenings for 1 hour.

With regard to surgery, please book an appointment with your partner's GP or specialist care provider, if he has one. They can talk him through his options and signpost to appropriate services.

For some additional information, I've included the link to

Cerebral Palsy : University College London Hospitals NHS Foundation Trust (uclh.nhs.uk)

The service offers comprehensive multidisciplinary assessment and care to adults with cerebral palsy and neuro-disability. They accept referrals of patients over 16 years of age.

I hope this information helps. Please contact our team if you require additional information.

@SaraC_Scope

Richard_Scope

Hi @MilliganHermione

I have not had that particular surgery but I have had plenty of others. Pre-hab (getting as fit and strong before surgery) is as important as post-surgery rehab. The post-surgery rehab needs to be discussed in detail so everybody is clear on what your husband might need and what they can realistically provide. It might be an idea to look at the layout of your home, i.e. sleeping down stairs during the recovery period.

forgoodnesssake

My son has athetoid CP and had ankle fusion and tendon lengthening on left foot when he was about 18 (now 26) and it was the best thing he could have done to keep him able to do standing transfers. He'd tried botox, serial casting, splints etc but not helping and his foot was getting so rolled round that he was almost unable to stand on it. it was done in Lancaster (sorry, a bit too north!) by a specialist ortho surgeon who had done this surgery on someone with CP before and a paed. orthopaedic surgeon and took about 2 hours.

Recovery time is long though..6 months before all cast off and allowed to weight bear on it. 3 Months in plaster and then 3 months in boot (which could be removed at night) Luckily son though unbalanced can take weight on legs do the right leg worked hard. Used a standing turntable for transfers and he was able to rest the plastered leg on a cross bar, and so on.

On anti-coagulant for the whole 6 months (rivaroxaban tablets).

MilliganHermione

Thank you guys. It's really helpful and insightful to hear about your experiences.

Thank you for taking the time to respond, I really appreciate it.