James' mum

Hello, just wondering if anyone could help me. My son James had flat feet and had surgery to correct this. The surgery involved breaking both feet, inserting a piece of cow bone and metal plates and screws. Horrific.. Unfortunately surgery did not work and he had to have the metal work removed, unfortunately some of the screws where broken in the foot and there are 6 or more half screws left in the feet. This is causing intense pain. James has been diagnosed with CRPS and is currently in transition from Alder Hey to the Walton Centre in Liverpool, in the meantime he is on crutches, cannot walk far and is on a cocktail of pain killers. What should I do, appointment at Walton Centre is not until August, is he just supposed to carry on with the pain. Alder Hey wont help as he has been discharged. Thinking of taking him upto A and E. Any help would be much appreciated. Thank you. X

5 Replies

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  • Maybe speak with your GP about moving the appointment nearer so that he can get there faster, GPS do have a bit more sway when it comes to appointments. Just a thought

    Philip

  • I am so sorry to hear about Jamez. It's bad enough being in pain yourself but watching your child suffer must be awful. I do think requesting that as he is a child and in such pain he needs to be seen more quickly. What medication is he taking and has there been other suggestions made about how to help him ?

    Dee

  • I'm shocked, this sounds horrific, how can a hospital leave broken screws in anyone's foot....is this normal practice....it shouldn't be!!!

    I'd go see your gp, then get in touch with the patient services at both hospitals. Maybe mention the word negligence in communications, this might scare them a little into sorting this out quicker

    If no one seams willing to help I'd definitely take him to a&e....possibly at the new hospital if this doesn't look to suspicious! Maybe you were visiting someone in the area, when things suddenly got worse. ūüėČ

    Good luck, August is definitely to long to wait

    Jo

  • A&E probably isn't the right place for this. It is for emergencies and this is chronic, although for him it probably feels like an emergency.

    I agree, see if you can do something to get the appointment sooner. Sometimes they run a cancellation list so it is worth ringing the secretary of the consultant that you are booked to see.

    There are other things that can help lift the spirits perhaps. Have you thought of using a wheelchair for outings? We started doing that with my son (he has fat pad atrophy) and it really turned his life around. He loved that he could go out without pain in his feet but still had the freedom to get out of the chair and walk if he needed to.

    Has he tried non-pharmalogical pain relief? This is from a Dr in America: "Dr. Francomono‚Äôs 75% Plan for Pain Relief. "Take, for instance that your medications take care of 20% of your pain relief. Then you use your TENS unit for another 10% reduction. Some Tiger Balm on your painful joints brings another 5% of pain relief. Maybe you could pull out your heating pad too for another 5% of pain relief. Then you decide upon a warm soak with Epsom Salts for another 10% pain relief. Deep breathing and some PT exercises combine for another 10% of relief. And then you watch a great movie for another 15% of pain relief. So now you have 75% of your pain managed effectively. How would your days be different if 75% of your pain was gone? Dr. Francomono‚Äôs plan demonstrates the importance of using multiple strategies‚Ķeven if each one only makes a tiny difference, the difference made when they all are added together is significant.‚ÄĚ

    "

    Clearly not all of them work for all people, for instance when I had pain from nerve damage heat and TENS made it a lot more painful, but watching comedy box sets with the people I loved so there was lots of laugher really helped me a lot. It lifted my spirits but also helped me to stop dwelling on the pain and to forget about it for a while.

    I hope you and your son find something that works for you to keep you going until you get the appointment.

  • Hi, sorry to hear about your son , it must be so traumatic or you both. I too have been diagnoses with CRPS, following failed ankle surgery. The most important thing with CRPS, is to have treatment as soon as possible. the earlier the start of treatment, the better the outcome. I think the GPwould be the first person to go and see, to get referred to a pain clinic. Some people recover completely, others are left with some some of pain/stiffness etc (like myself). It depends on which type it is. Type 2 (which I have) is as a result of nerve damage during surgery.. I can tell you though that the first year was awful, pain, weird sensations, sensitivity to heat and cold. Hair and nail growth was increased, plus the fact that I could not walk properly. I am now 6 years down the line and am on crutches, but the pain is not what it was. Once it settles down then you are in a better position to understand the long term effects of CRPS. Like I said above, starting treatment early is very important. Physio, pain relief ( for nerve pain), as well as other treatments available depending on where you live, e.g mirror therapy. Also there is a CRPS clinic at the Bath United Hospital. As I live in wales, my consultant has had to apply for funding for me to attend, but if you live in England then its a lot easier. Just keep on asking questions and getting support, it is a condition that is now getting a bit more air time. It remains a very debilitating condition , but is different for everyone, depending on type 1 or 2. Hope your son starts the treatment soon, and remember to keep positive!

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