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CP and treatment

Jon Killeen
Jon Killeen Member Posts: 4 Listener
I have diplegia. I have had a two operations when I was younger and botox injections. My specialists confirm with my 2.5 ops done and due to my foot angle it will only ever get worse - they have mentioned an Ankle Fusion. I have AFO and footwear but it is already getting unbearable. Then pain is one thing, it's the lack of the sleep I cannot really deal with. I am on co codamol and baclofen but it's not working - for me. Has anyone had experience of an Ankle fusion - what is involved and how did you find recovery from the op, what orthotics do you now use, how to you move around? I have a follow up in the first week of September 2015 so would like some idea of what could be in store for me.


  • helpathand
    helpathand Member Posts: 17 Connected
    Hi JK. Sorry I have only just joined the discussions and as you will see have similar dilemma. I have appointment at the end of Jan to discuss the option of fusion. I am so sorry that you are getting pain at nights. That must be exhausting for you. My option would be fusion of one foot and then at some unspecified date double re lengthening of tendons which I had as a child twice one side and once the other.

    My worry is that as I drive, and it is my right ankle, I do not know if that would be still possible without a bit of movement. Also my other leg is not strong and they have said it involves 8 weeks not weight bearing on the operated foot. I cannot hop and will need to see if there is some kind of convalescent option as I live alone with no family. Even if I had masses of people I still do not see how they could get me to the toilet!!!!

    I'd be happy to ask any questions you forgot as if they were mine on my appointment!!!!
  • helpathand
    helpathand Member Posts: 17 Connected
    Please can you help my ignorance. What is AFO? I personally was using volterol gel on the place of the pain but then had a flare up and got given strong paracetamol and strong ibuprofen. (with stuff that stops the stomach side effects of the latter, because I was in agony yesterday and could not walk from disabled space to doctors door at surgery.
  • Jon Killeen
    Jon Killeen Member Posts: 4 Listener
    Thank you Helpathand. An AFO is an ankle foot orthosis - I will have to use for the rest of my life. Some have been good, some bad - thankfully at the moment things are looking up. With the fusion idea - that was ruled out by my surgeon immediately - last resort etc. Hope you're doing well.


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