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Bunion Surgery And Cp

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  • panther
    panther Community member Posts: 251 Courageous
    Hi

    Well what can I say I went to Oxford last week for physio. The physio was amazed that I'd had the surgery I have as she said they have done a surgical procedure on something that is mechanical. We now have to rehabilitate you and it's far easier to do that with a child than an adult. She also said that she couldn't give me any promises she believed the pain in my foot around my ankle would only be stopped by an insole in my shoe. She also agreed to bounce me back to community to save me having to travel to and from Oxford. She also wanted a refferal made to local hydro.

    A week later I have done my list of exercises every day for a week and the pain around the ankle has gone!!
    Community physio is still reluctant to be involved. So have just rang Oxford in frustration and said what do I do.
    They've now said if the pain has gone then I don't need hydro, and I probably don't need a gait analysis because if I'm getting from A to B without pain then it's best to leave well alone on if it's not broke don't fix it approach. I have to wait and see what the consultant says re the gait analysis as the physio had already written to him asking if she could or if he wanted one.

    So all in all 6 weeks of physio has come down to one 1hr session and then for me to ring them if I have anymore pain. Oh well will just have to see what happens on 3rd August when I go back for an outpatient appointment.

    Helen
  • panther
    panther Community member Posts: 251 Courageous
    Hiya Karen

    You read my message correctly what with physio and the hassle I'm having with social worker is all getting a bit much. The fact that my seizures started up again a few weeks ago (seizures are stress related) says it all really.

    Physio at Oxford is working on a if there's no pain then leave well alone if it aint broke don't fix it view.

    Social worker came out yesterday I'm trying to get direct payments to enable me to hire a PA company to take me out more. Social worker turns up says "Oh you're walking you don't need a pa if we get you a rollator with a seat then you can walk to the bus stop/ train station to get where you need and sit on the seat when you get tired!!!! She accepted that from my house to sainsburys was now too far for me to walk but didn't accept that the bus stop and train station were further away.
    She just keeps saying use your DLA. So am pretty fed up with all the constant battles at the moment.

    As for physio gp is saying the hospital physio knows best so will just have to wait till I see consultant. It saves me having to fund getting to the hospital I guess. They wouldn't agree the physio was an essential medical need to pay for me to keep going to physio at Oxford using hospital transport.
    Community physio is still saying I'm an adult woth cp and she doesn't know what to do!!!

    Take care love
    Helen xx
  • VILA
    VILA Community member Posts: 29 Listener
    so peter saying paul is in charge and paul is saying fred is in charge and if you go and see fred then you either got to walk and sit when you get tired, or walk further and get a train(!) and pay for it yourself cause we aint gonna transport you there! i think i got it now!

    You can get hydro at amersham if they ever agree to it but of course now you not in pain they wont go for that - hydro is an important part of your recovery process. these 'people' (wanted to say something rude but know it will get blocked), should try and walk a mile in your shoes (which actually you would probably like to do yourself!)

    Community pysio should find out what to do with an adult with CP - who do you see? i seen most of them now i think.

    chin up, you will get there you have come so far since being discharged and you know you have. boy your head must be sore with all the wall banging you have been doing!

    will come and see you soon hopefully - been saying that for a long time i know but have a lot on myself as liam back in oxford on 18th for ICP monitoring as his shunt may be over draining. ! :-D

    karen x
  • VILA
    VILA Community member Posts: 29 Listener
    Hiya helen, and apologies - not been on this site for a while.

    Well done on getting rid of the pain, you must be delighted although the tone of your message sounded quite down - i suppose this is due to the brick wall you keep hitting!

    I would say that physio in the community is better but i was told last week by liams physio (who was no longer working but called back in as they have NO ONE TO SEE THE MULTI-LEVEL SURGERY PATIENTS ! NHS makes you spit sometimes.

    Oxford have the power to enforce community physio, i would get the consultant involved and see what happens from there. Is there a physio attached to your GP surgery? We have one up here although you have to join the queue!!!!

    I hope you do get some hydro, failing that get your foot in the bath and do the exercises in there yourself!

    :-)

    karen x
  • panther
    panther Community member Posts: 251 Courageous
    Wall banging is about right along with ranting at the Scope response team just to help my sanity. I think I have one or two people from there banging their heads on brick walls with me now because they just can't believe it.

    Hydro is definately out now as I have no pain so possibly is the gait analysis they are waiting to see what my consultant says and also I don't think the insole is needed now.
    Community physio wise I've seen Ann Rose once!!! And she said she has tried to phone around all sorts of places to ask for advice on what to do with an adult with cp and no one knows. One for Scope there I think.

    How are things going with Liam and all your trips backwards and forwards? Will be thinking of you both on the 18th. And yes we will get together for that coffee one day lol!!

    Take care

    Helen
  • panther
    panther Community member Posts: 251 Courageous
    Hi All

    Just to add to this on going post and my tale of woe since going ahead with this surgery. I now think there is a possiblity that the screw in my left foot may of moved again!!!!

    The other week I turned over in my sleep and woke myself up as it really hurt it felt like I'd caught the edge of the screw as I moved. Now that foot really hurts or aches when I walk on it and I can put my finger on exactly where the screw is and feel it. I can even feel it through socks.

    I really hope it hasn't moved again not sure how much more of this I can take before I go mad. Have got an outpatients appointment next Friday so will see what they say then. In the meantime grit my teeth and moan lol!!

    Will keep you posted.

    Helen
  • panther
    panther Community member Posts: 251 Courageous
    Well just back from outpatient appointment and I have to have more surgery done!!! I didn't think 3 years ago when I started down this route of bunion surgery that I would end up having to have so much surgery when if you are able bodied it is straight forwrd surgery.

    I now need to have one of the tendons lenghten not the achillies tendon as this is too dangerous surgery to do on an adult. But one of the tendons just behind my ankle to stop my other toes from curling under.
    Apparently they are curling because of the cp and the tight achillies tendons.

    The tendon lengthing is going to be done on both feet and at the same time they are going to take out one of the screws in my left foot as it is causing problems.

    Consultant did suggest I wait until I'm more recovered from this surgery and walking more but I pointed out that I'm in too much pain to try and walk more. So they've said 3 or 4 months time for surgery but we all know what hospital waiting lists are like. So that probably translates to sometime next year. What fun that will be the 3rd year running spent having and recovering from surgery.

    Helen
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous
    Hi Helen,

    I have just read your 'blog' from start to finish, my eyes are very tired now, but I couldnt stop as it facinated me.

    I was born with CP and over the years bunions have developed on both my feet, now at the age of 45 yrs nobody seems to want to know about my increasing difficulties in getting around. About 3 years ago my bunions started to cause real concern, and as you said - my big toes are crossing over and are painful, my other toes are squashed and my little toes had a constant corn and hard skin and sometimes got ulcers between my little toes.

    For about 10 years I have been having surgical shoes made, and the orthotist had been making them wider and wider and my feet were getting worse. My chiropodist told me to tell him he was making things worse by allowing my toes more room to move around in the shoe and rub. He said he didnt agree and was trying to relieve the pressure.

    I was going round in circles, and the orthotist eventually brought an orthopaedic consultant into the room to see me one day. He suggested surgery which would involve removing some toes. I said I would think about it.

    I came home very upset and not knowing what to think or who to get advice from, I have only discovered this forum today, this was a couple of years ago.

    The next time I went to see the chiropodist, I told her and she looked in dismay. I think you have enough problems as it is, she said, without anyone adding to them. She tried making molded things to seperate my toes and suggested I spray them EVERY day with surgical spirit. The surgical spirit works wonders, it really is fantastic, but the toe seperators made things worse. One day my mum said - you may think this stupid, but what about ear plugs? She had been on a Virgin Atlantic flight and they gave her ear plugs which are a very soft foam which squashes to nothing. For the last 2 years I have sprayed my feet and put earplugs between my little toes, much to the amusement of the Chiropodist and the orthotist, BUT IT IS WORKING.

    At last my feet are getting stronger and I am not in my chair quite so much. Which is just in the nick of time as I am starting to have hip and back problems due to the lack of walking. My GP has this week referred me to a physio but there is a 20 week waiting list here.

    My question to you Helen is - do you think it ws all worth it? If in time my problems come back, should I consider surgery?

    Good luck with your recovery, and I look forward to reading the next episode.

    Kind Regards

  • panther
    panther Community member Posts: 251 Courageous
    Hi Hymerkar

    Sorry to of made your eyes so tired I started this thread going as when I was looking for information on bunion surgery and cp and the effects cp had on the surgery or vice versa I couldn't find any information. Hence this post in the hope that it may help others.

    Like you it was suggested that I had toes removed but luckily I was bounced to a 3rd consultant for another opinion and this consultant told me he could do surgery. Was it worth it honest answer I don't know at the moment. It was a very hard decision to make to go ahead with it and I didn't expect all what has happened to of happened.

    If I'm honest I thought I would have one foot operated on one year the other foot the following year and that would of been it. Now it looks like next year will be my third year of surgery as although the consultant said yesterday he would get me in in 3 months time his secretary laughed and said you are looking at next year!! And I hadn't expected that so am a bit fed up with it all at the moment but time will tell.

    I suppose after my left foot was operated on (first surgery) for the first time as my mum said my foot looked "normal". But how my walking etc changed was hard to cope with. So I don't feel at the moment I can give you an honest answer on has it been worth it. I will keep this post going over the next lot of surgery and recovery and maybe I will be able to answer better then.

    Glad you have found something that works for you. Take care Helen
  • panther
    panther Community member Posts: 251 Courageous
    Hi Karen

    No I haven't updated this post for awhile as I'm playing the waiting game. I'm currently on the hospital waiting list for more surgery.

    I saw the consultant in August and he says that they can now see that the cp has caused complications in the bunion surgery because on both feet my other toes are starting to curl under. To attempt to correct this I need more surgery. Apparently this time they will lenghten tendons they go in at the side of my ankle and lengthen the tendons there. Though it is not the achillies tendon which I originally thought he was talking about.

    The consultant said I would have the surgery in 2 or 3 months but his secretary told me I was looking at next year, so I'm assuming it will be early part of next year. I'm being a glutton for punishment again and going for both feet being operated on at the same time as I'm fed up with keep going into hospital.

    Oh I nearly forgot he is also going to take the screw out of my left foot as well as it is causing me pain. Makes you wonder why he opened that up last time and put it back in place, if he is now going to open it up again and throw it away.

    Will keep this post updated when the hospital merry go round starts again.
    Take care

    Helen
  • bloggergirl
    bloggergirl Community member Posts: 6 Listener
    Think I would be asking for a second opinion first .
    Louise
  • panther
    panther Community member Posts: 251 Courageous
    Hi Louise

    The consultant who has been doing my bunion surgery from the start was already my 3rd opinion and the only one I could find that had expierence of cp. The other consultants I saw right at the begining of this both talked about amputating toes because my big toes on both feet were going over on to the other toes so much.
    I felt amputation sounded rather scary and couldn't see how it would solve the problem.
    The consultant at the Nuffield orthopediac hospital in Oxford has been honest with me from the start telling me yes they could correct the bunions but they wouldn't know until after if the cp would present any problems.
    I was in a difficult position as I was told there was a 50% chance you won't be walking after the bunion surgery. But if you don't have it done within about 5 years you will be in a wheelchair full time just because you can't put shoes on. To me to be in a wheelchair full time just because I can't put shoes on seemed a really silly reason, and I felt I'd then always wonder would having the surgery of made things better.

    At the moment I am still walking indoors but use my chair outside as I'm still getting tired quickly when walking. Hopefully this third lot of surgery will solve the problems once and for all and I can back to walking more. If it still goes wrong at least I will know I tried all I could.

    Like everything it is very hard to find anyone that has expierence of adults and cp even the physios both at the hospital and in the community haven't known what to do with an adult with cp and it's even more frightening for them to come across an adult with cp that can still walk some of the time!
    Hopefully my expierences will help others in the future if they every face the same decision as me.

    Take care

    Helen
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous
    Hi Helen, You havent brought us up to date on your surgery for ages. Hope all is well. Look forward to reading your next update.

    Karen
  • akkanaeda
    akkanaeda Community member Posts: 4 Listener
    Helen, is the "no pain, no physio" standard for Oxford?
    The CP isn't as bad as yours by the sound of it, I've had spasms in my left hip for as long as I can remember and they have started going up my spine so I do spontaneous backbends when I am asleep and constantly feel the contraction during the day. Years ago I was told "no physio until you are in a wheelchair", but since the spasms have got worse in the past couple of years the GP has said he'll see about finding someone to do something, although as I don't look like there's anything wrong until the spasm happens he isn't very confidant anything will be done.
    At present I'm getting good results with yoga as long as I do it twice a day to counteract the effects of the CP, but the benefits people will require me to be coming off Income Support soon and getting a job. Explaining to them that I can't do this or that because it will exacerbate the spasms is going to be a problem - occasional spasms don't let me be classified as disabled.
  • panther
    panther Community member Posts: 251 Courageous
    It's not the no pain no physio approach more the you're an adult with cp and we don't know what to do with you. The hospital said they'd get me weight bearing then leave it to the community physios to actually get me walking later on. As they didn't want me putting too much weight through my toes and the area that had been operated on. I could understand that so wasn't too worried.

    But then the community physios for Bucks got involved once I was home. When they came out for the first visit their response was what are we supposed to do with you? We don't normally put physio in for someone that has had bunion surgery it's left to the individual to get walking again.

    I explained that I wasn't asking for physio input because of the surgery but because I had cp and hadn't been mobile for about 6-8 weeks. Their response was still well what am I suppose to do with you. You're an adult with cp and no physio works with adults with cp. We work with you up until about 16 or 18 if you are lucky but then after that I don't know where we think you all go but there is no physio input so I don't know what to do with you. It's almost as if we think you disappear off the face of the earth!!

    She asked me to attend a session with a physio that had expierence of working with children with cp but even she didn't know what to suggest. The two physios sat and brain stormed together places that may of been able to give advice on what to do, but even after contacting these various places they still couldn't find anyone that knew what to do with an adult with cp.
    They had hoped that the neuro physio at one of the local hospital may of been able to help but her response was no way I'm not touching that with a barge pole!!!
  • panther
    panther Community member Posts: 251 Courageous
    Hi All

    Well it looks like the surgery could be sooner than I thought. I was expecting to go back in Jan or Feb next year, but have spoke to admissions today and they have told me that I'm down to be scheduled in at the beginning or mid December.

    Still a bit shocked by the thought it could be so soon and am apprehensive about the surgery generally anyway but not much I can do I guess as walking is too uncomfortable at times at the moment.
    Will keep you posted on how things go this time. Wasn't exactly what I'd planned for Christmas but never mind.

    Helen
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous

    Hi Helen,

    First of all, good luck with the surgery, I think you are very brave going through it all again, but as you say, you cant carry on as you are, you got to try somthing.

    I am having a problem at the moment with the physio side of things. I have had a problem with my back which has hampered my walking and going round in circles it has got worse. I couldnt walk because of my back and because I havent been able to walk I am now very stiff and having to use a rollator. Last week I went into so much spasm that I have trapped a nerve in my back and its caused my left leg to go numb. I couldnt stand at all for 7 days, which has made my back and legs even worse. The community physio is just lost. She knows what to do with a weak back and with the trapped nerve but not combined with CP in adulthood!

    At the moment the doc has got me on 20mg of Baclofen a day and Co Codamol 3 times a day. I am now able to walk a little and sit up for about 30 mins at a time but I am like a zombie.

    The physio is calling in the morning to see about my going for Hydrotherapy but I dont know how I will get there because I cant sit in the car never mind drive.

    Its so frustrating they just dont know what to do with me and I have been in agony. I had a miscarriage 5 years ago and that wasnt half as painful as this has been. I have been rolling around the floor in floods of tears because the spasms have been unbearable. Thankfully the Baclofen have calmed it down a little.

    Has anyone got any suggestions?
  • panther
    panther Community member Posts: 251 Courageous
    Hi Hymerkar

    Sorry to hear you are having so many problems. When the community physio team didn't know what to do with me after my surgery this year. The consultant reffered me back to the hospital physio dept. When I went for an assessment with her she did some exercises and things but said I'm actually treating you in the same way as I'd treat anyone else. I know you've got cp but I'm not doing anything special or different because of it.
    So if your physio knows what to do for a weak back and trapped nerves could she not try and treat you as she would an able bodied person. Is it worth asking her why she won't?

    Will keep this post more up to date in a few weeks I go for pre op assessment on Friday then in for surgery on the 13th Dec.

    Take care

    Helen
  • panther
    panther Community member Posts: 251 Courageous
    Hi Everyone

    Well been to 3rd pre op appointment today. Good job I insisted with admissions a few weeks ago for a pre op appointment because when they sent me through surgery dates for the 13th Dec they said I was doing day surgery and didn't need pre op!!

    After pre op today have discovered exactly what I'm having done and that I will be in for 3 or 4 days. For those of you that have followed this post they are now taking the scew out of my left foot which they put back in place in Feb. They are also lengthing some tendons somewhere near my ankle which will straighten my toes. But to then prevent my toes from curling back under they are going to put pins in the tops of my toes to pin them straight.

    On my right foot they are going to break my toes and move them all along and put pins at the bottom, like they did on theleft foot last year, and then do the same tendon lengthing and pins at the top of my toes the same as the left foot.

    I have been told it will be a long recovery, I was offered the option of one foot done now then the other done in about four weeks time but being the glutton for punishment I am I've opted for both together as I'm fed up with being in hospital. Apparently I will be able to weight bear but only a little bit because it will hurt so much.

    I don't know if I will be in plasters or dressings I forgot to ask that question. I did discover that my consultant has found this post and been following it!! So Mr Cooke if you are reading this prehapes you could let me know! Plasters or dressings when I come home?

    Will keep you all posted on how it all goes and if I'm going insane with boredom during recovery.

    Helen
  • panther
    panther Community member Posts: 251 Courageous
    Hi All

    Just a quick update. I'm home from hospital I had the surgery in the afternoon on the 13th and was sent home on the 14th!!

    Nursing care was a lot to be desired. While I was waiting to go down for surgery I talked to a nurse on the holding ward about my concerns of coping alone when home. She arranged with the bed manager for me to be in for 4-7 days instead of 3-4 To give me a rest and get my confidence.
    I ended up being in less than 24hrs!!

    I had the surgery about 1pm and was back on a ward by about 6pm I'd had morphine though in recovery so was very sick. But even then at 7pm I was transferring to my wheelchair to go to the bathroom.

    I had to laugh one of the night staff told me at hand over they were told I was non weight bearing and had to be hoisted. She said she spoke up and said she can transfer herself I remember her from earlier this year and if you wanted her hoisted you've put her the wrong side of the ward for the hoist!!

    Nurses just didn't answer buzzers another patient got me a bowl when I was feeling sick as no one came to answer my bell.
    The consultant came round Friday morning and said it was up to me and the physio when I went home.
    Because the consultant doesn't want me walking and only weight bearing for transfers for 8 weeks. I just had to show I could transfer safely.

    The physio came back later watched me transfer from the bed to my wheelchair said it was perfect asked if I'd used the bathroom and if there were any problems. Then said well you can go there's no reason for you to be here as we can't do anymore.

    I had an argument with one of the nurses as they wouldn't bleep my consultant to find out when dressings had to be changed. She told me to leave them 2 weeks then have no dressings. Eventually she bleeped the consultant and found out that he wants dressings changed every 3 days and dressings on for up to 8 weeks when I do outpatient appointment.
    As she had taken so long before she found this out the nurse was unable to set up the district nurse for me. I have got to do it on Monday, so although dressings should of been changed at the weekend they weren't.

    Also my tablets weren't ready from pharmacy when I was ready to go home and we had to go over to another hospital and collect them or wait another 2-3 hours.

    As expected I've come home with no care in place I'm allowed to weight bear to transfer from wheelchair but that is all. I'm not allowed to walk until after my outpatient appointment in about 8 weeks time. Then supposedly I'm being referred back to the hospital for intensive physio but we wait and see what that means.

    I did speak to the duty team of social services before I went in but she basically said to me it was down to the hospital to asses my need for care. If they felt I didn't need it but I felt I was struggling when I was home I could contact social services myself. But she couldn't guarantee I'd get help as at this time of year they are struggling to cover their existing clients.
    It is hard and tiring but I think if I contact social services they would say I was managing ok.
    So as I expected a long recovery ahead of me with no support from social services. The problem is the things I really can't do like change my bed I know they don't do now as it is considered domestic and they just tell you to use the care component of your DLA to pay someone to come in and do it.

    Will try keep you posted but until I get my computer moved it is hard to get online but will try

    Helen

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