Cerebral Palsy
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Surgical Options for Adults

bscottbscott Member Posts: 5 Listener
Hello Everyone,


I was diagnosed with spastic diplegia as a child; I'm now 25. I have an abnormal gait, with my feet rotating inward; this is more prominent in my right leg and foot. I'm fortunate that I'm not in constant pain, however, in the last few months, I have been experiencing more and more pain in my lower back and around the pelvic areas. I also now find walking itself to be more challenging, particularly walking up steep gradients or steps. In the last few years, I've developed body-image issues relating to my gait, resulting partly from bullying in secondary school, and years of constant 'looks' and comments from people as if there is something wrong with me. I'm finding it increasingly difficult to get out in public, both for mobility reasons and for mental health reasons.

I'm wondering if anyone knows of any surgical options (if there are any) that may correct my legs and feet. I have been looking at SDR, however, this option seems exclusive to children (at least on the NHS).

Any advice will be much appreciated. 

Replies

  • April2018momApril2018mom Member [under moderation] Posts: 2,882 Member - under moderation
    Hello @bscott

    I am tagging @Richard_Scope as he might be able to answer your question. 
  • chiariedschiarieds Community champion Posts: 7,476 Disability Gamechanger
    Hi @bscott & welcome to the community where I hope others may offer their opinion.

    I don't know if you've had physiotherapy in the past, but there's no reason why you couldn't ask your GP to refer you for an assessment due to the pain you've experienced lately. This would be my first thought.

    Secondly, the last reason to consider surgery, of any kind, is not because you feel others may be viewing how you may walk differently, but if it would benefit you, & your mobility & reduce your pain.

    I know this is a simplistic view, & I do appreciate why you're asking because of how insensitive people have been. Perhaps also discuss with your GP how this has impacted on your mental health, which matters just as much as your physical well-being as you obviously know.

    I did find one study on SDR in 64 adults with spastic diplegia, but this was done in the USA.
  • berhoadesberhoades Member Posts: 4 Listener
    Hi @bscott !
    I’m sorry to hear about your experience with bullying and stares from strangers. People can be so ignorant and I hate to hear when things like this happen. 
    I don’t have any advice on surgical procedures, but was wondering if you have ever had occupational therapy? I am an occupational therapy student myself and thought OT might be able to help you with some of the things you are experiencing. 
    I hope you are able to manage your pain and go out and do the things you enjoy without feeling like others are staring. 

  • Richard_ScopeRichard_Scope Scope community team Posts: 2,693 Scope community team
    edited October 2019
    Hi @bscott  
    It's great to meet you and welcome to the community.

    I live with quadriplegic cp and I have experienced all of what you have mentioned, I can understand where you are coming from completely. 
    The NHS performs SDR surgery only on children because that is the group where there are the most successful outcomes. SDR is not a 'miracle' cure, hence the rigorous testing for suitability. There are other options that you might want to explore, such as botox injections to manage the muscle tightness. This would need to be discussed in-depth with your G.P. Keeping as active as you can is also really beneficial for managing cp and mental wellbeing.

    How you feel about yourself and your mental wellbeing is just as important as your physical condition. I would really recommend having a chat with your G.P. about this too.  There is absolutely nothing to be embarrassed or ashamed of. I have had the help of mental health services on many occasions and whilst I have found some techniques more useful than others, I don't regret starting the conversation.
    You have taken that step here, which is the biggest one by far.

    I'm more than happy to chat further with you about my experiences. Let me know if I can support you.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • forgoodnesssakeforgoodnesssake Member Posts: 354 Pioneering
    Hi, my son (21) has athetoid CP so slightly different in effect, however he was having increasing problems with the inward rotation of one of his feet in his teenage years and whilst he was/is unable to walk unaided, he was able to take steps which are incredibly useful for transfers as well as hip stability.  However by the age of about 17 he was finding it harder and harder as he was basically stepping on the outside edge of his, already unstable, foot and so we embarked on about 3 rounds of botox into the posterior tibialis plus serial casting. This had some, very temporary benefit the first one or two times but in the end, after discussion with his orthopaedic consulatnt (that's who you need to get to speak to by the way) he decided (at age 19) to have bone fusion in his ankle plus achilles and under foot tendon lengthening.  (triple arthrodesis I think it's technically called!)  This was complex surgery with 2 surgeons and then a very long recovery...6 months til able to weight bear without cast or boot.  However it was incredibly successful and he now is able to place 2 flat feet on the ground for much more stable stepping, which has a lot of positive implications.  He is very glad he chose to do it
  • bscottbscott Member Posts: 5 Listener
    chiarieds said:
    Hi @bscott & welcome to the community where I hope others may offer their opinion.

    I don't know if you've had physiotherapy in the past, but there's no reason why you couldn't ask your GP to refer you for an assessment due to the pain you've experienced lately. This would be my first thought.

    Secondly, the last reason to consider surgery, of any kind, is not because you feel others may be viewing how you may walk differently, but if it would benefit you, & your mobility & reduce your pain.

    I know this is a simplistic view, & I do appreciate why you're asking because of how insensitive people have been. Perhaps also discuss with your GP how this has impacted on your mental health, which matters just as much as your physical well-being as you obviously know.

    I did find one study on SDR in 64 adults with spastic diplegia, but this was done in the USA.
    Thank you Chiarieds,

    I've had physio on and off since I was very young. I didn't find the sessions very helpful, but I'm open to the idea of mentioning it to my GP. I agree about your points re: considering surgery in the first place. I am considering the surgery on the basis of improving mobility/reducing pain, but I probably need to address the psychological issues stemming from the condition first.


  • bscottbscott Member Posts: 5 Listener
    berhoades said:
    Hi @bscott !
    I’m sorry to hear about your experience with bullying and stares from strangers. People can be so ignorant and I hate to hear when things like this happen. 
    I don’t have any advice on surgical procedures, but was wondering if you have ever had occupational therapy? I am an occupational therapy student myself and thought OT might be able to help you with some of the things you are experiencing. 
    I hope you are able to manage your pain and go out and do the things you enjoy without feeling like others are staring. 

    Hello Berhoades,

    I've had Occupational Therapy before, but didn't find it very helpful in the sense of dealing with the condition itself. There were some good points however.
  • bscottbscott Member Posts: 5 Listener
    Hi @bscott  
    It's great to meet you and welcome to the community.

    I live with quadriplegic cp and I have experienced all of what you have mentioned, I can understand where you are coming from completely. 
    The NHS performs SDR surgery only on children because that is the group where there are the most successful outcomes. SDR is not a 'miracle' cure, hence the rigorous testing for suitability. There are other options that you might want to explore, such as botox injections to manage the muscle tightness. This would need to be discussed in-depth with your G.P. Keeping as active as you can is also really beneficial for managing cp and mental wellbeing.

    How you feel about yourself and your mental wellbeing is just as important as your physical condition. I would really recommend having a chat with your G.P. about this too.  There is absolutely nothing to be embarrassed or ashamed of. I have had the help of mental health services on many occasions and whilst I have found some techniques more useful than others, I don't regret starting the conversation.
    You have taken that step here, which is the biggest one by far.

    I'm more than happy to chat further with you about my experiences. Let me know if I can support you.
    Hello Richard,

    Thank you, I appreciate the support.
    I have briefly looked into botox injections, but, as you say, I need to discuss this with my GP to see if they would have any benefit.

    I have been engaged with mental-health services on and off for unrelated factors, but haven't really brought the CP up in conversation. It's only very recently that I suspected the condition was factoring into my mental wellbeing. Hopefully, I can start to bring it up and explore it further.


  • bscottbscott Member Posts: 5 Listener
    Hi, my son (21) has athetoid CP so slightly different in effect, however he was having increasing problems with the inward rotation of one of his feet in his teenage years and whilst he was/is unable to walk unaided, he was able to take steps which are incredibly useful for transfers as well as hip stability.  However by the age of about 17 he was finding it harder and harder as he was basically stepping on the outside edge of his, already unstable, foot and so we embarked on about 3 rounds of botox into the posterior tibialis plus serial casting. This had some, very temporary benefit the first one or two times but in the end, after discussion with his orthopaedic consulatnt (that's who you need to get to speak to by the way) he decided (at age 19) to have bone fusion in his ankle plus achilles and under foot tendon lengthening.  (triple arthrodesis I think it's technically called!)  This was complex surgery with 2 surgeons and then a very long recovery...6 months til able to weight bear without cast or boot.  However it was incredibly successful and he now is able to place 2 flat feet on the ground for much more stable stepping, which has a lot of positive implications.  He is very glad he chose to do it
    Hi Forgoodnesssake,

    I'm glad the surgery has helped your son. Unfortunately, I don't currently have a consultant, and haven't had one for about 13 years, since I was discharged. I am hoping to be referred by my GP, though expect a long waiting list.

    In terms of the triple arthrodesis itself, did it have any effect on the rotation of the foot?
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