Cerebral Palsy
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Knee surgery and Cp

DragoonaterDragoonater Member Posts: 2 Listener
edited April 2018 in Cerebral Palsy
Hello to everyone. I'm new to this site so thanks for reading this.  If anyone has questions I will do my best to answer.

I have had Knee surgery about nine times.  5 on the left knee and 4 on my right.  The reason behind these surgeries?  I kept falling down too much and not only that but my knee caps were not in the right place. Imagine a moutain.  Yeah....thats how my knees look right now. [moans]  The doctors had to reline my patella to the right place. [shaking my head] But no matter how many times they have done it, my knee caps would float back up. [glaring at my closet where my crutches are] For nearly 9 + years I've had those crutches. [groaned] The worst part?  I did all those surgeries when I was 11 years old and I was still growing at the time.  My parents were worried that my condition would worsen if they didn't do something which resulted to my surgeries.  It wasn't until 2 years ago that I found out that I have Cerbal Palsy Gait. [sighs deeply] All of those surgeries must have been because of the CP Gait.  That and bad genetics. [chuckle]
Right now I only use a cane whenever I feel unstable and when my knees are REALLY bad I would result to using the pain in the neck crutches.

I'm still new to CP Gait so there are things that I don't know.  But I have learned that I get tired easily, I suffer from back pain, muscle spasms and occasional drooling.  If anyone has any suggestions or advice on how to handle this, I would appreciate the advice. ^ ^

Replies

  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Hi Dragoonater and welcome

    Thank you for joining us and sharing your story

    I am sure that we have members that will understand an be able to offer assisstance

    In the meantime please have a look around and ask any questions

    CR
    Be all you can be, make  every day count. Namaste
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Welcome to the community @Dragoonater and thanks for sharing.

    @Richard_Scope can you help at all?

    We have lots of information about CP here that might be useful?
    Scope
    Senior online community officer
  • Richard_ScopeRichard_Scope Posts: 2,838

    Scope community team

    Hi @Dragoonater
    Knees! More trouble than they're worth sometimes. I have had very similar surgeries to you at the age of 12. I also had some of my abdominal muscles transferred to my knees, so as you will understand Knees are not my favourite body part! My parents also thought it was the best course of action to mitigate any further deterioration in my mobility.
    Tiredness is really common. People with CP use up to 5 times more energy moving about than people without. The aches and pains are also due to the way we move and the fact that stress is put on different joints to compensate.
    I would advise that you pace yourself, for example, I tend to get my physically arduous tasks done in the morning (if possible).
    We have a great discussion thread on tips for managing your CP. I include the link here:
    https://community.scope.org.uk/discussion/28690/things-that-you-have-found-helpful-for-managing-your-cp#latest  
    Has your consultant discussed orthotics for 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. 
  • DragoonaterDragoonater Member Posts: 2 Listener
    Orthotics?  Not familiar with that.  But my knee doctor has  suggested: 
    Knee Replacement-which I don't want. 
    Getting a new tendon from a cadaver....which sounds "a little" promising.
    Removing my knee cap....which will limit my mobility even more. 
    Or [shudder] shots to give me cushioning between my bones.  

    I was thinking of doing the shots but [shudder] I HATE shots.  I have no idea how well they work either.  

    I'm so glad to know that I'm not the only one who's had surgery at such a young age.   ^ ^  I have not met many who can relate to my problem so I'm really happy to hear that.

    I do pace myself the best that I can but it's not really easy.  I will have a look at the link you gave me when I have a chance.  Thank you. ^ ^

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