Cerebral Palsy
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Baclofen pump

SystemSystem Posts: 470 Scope community team
edited May 2018 in Cerebral Palsy
This discussion was created from comments split from: Baclofen.

Replies

  • GlobsterGlobster Member Posts: 421 Pioneering
    edited May 2018
    Hello 
    I am a 30-year young man with CP, I use to have a baclofen pump four years, but it was taken out because got infected. 

    I am now 90g of oral baclofen tablets 3 times a day as well 100g gabapentin tablets 4 times a day, but this does not seem to be helping with back spasms and spasms in my legs. 

    I would like to know if anyone has had the baclofen pump put back in and it has improved your life. I really appreciate anyone advise. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,328 Scope community team
    Hi @Globster
    Welcome to the Community and thanks for your post. I'm sorry to read that you have had to have the Baclofen pump removed. Have you contacted your G.P. since the removal to explain that the oral medication is not providing you with the same benefit? It is also important that you discuss whether re-insertion is viable. 


    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Jean_OTJean_OT Member Posts: 532 Pioneering

    Hi @Globster

    Welcome to the community.

    Sorry to hear that finding a solution to manage your spasms is being problematic.

    Totally agree with Richard that talking to your GP is the starting point. GP will probably need to refer you back to the consultant to discuss if another pump is possible, or of other things (like botox for example) might be an option. In the meantime can your GP urgently refer you for physio, etc to help manage day-to-day?

    The pumps are made by Medtronic, they have an interesting website: http://www.medtronic.com/uk-en/patients/treatments-therapies/drug-pump-severe-spasticity/living-with/during-treatment-pump-replacement.html

    Most people that have been on IB for any length of time will have had several pumps as they have to be replaced every 4-7 years. So maybe the question is more to do with if another pump would be safe/suitable for you considering your individual clinical circumstances (including infection risk).

    Best Wishes

    Jean 

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • GlobsterGlobster Member Posts: 421 Pioneering
    Hello Richard and Jean 
    I really appreciate all your advice from you both.
    I have recently spoken to my consultant who gives botox injections in legs and right hand and hand, who has referred back to the consultant who deals with the baclofen pump, but I bit scared about having the pump put back in.  
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