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Bunion Surgery And Cp

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  • panther
    panther Community member Posts: 251 Courageous
    Hi Karen

    It's good fun isn't it not!! I don't know whether to laugh or cry for the most of the last few days there's been more tears than laughter!!

    The GP is not happy she says she's never known anyone have this happen, but my old physio has said they've got to stop treating me as if I'm able bodied because I'm not and as soon as they got me up walking I didn't stand a chance of the toe healing becuase of how I walk and weight bear etc. GP also says she will get no where with admissions.

    Scope response said to try and complain but I went to PALS last year when they kept moving the dates every few months and they talked to admissions once and then came back to me and said they couldn't take it any further so am reluctant to try that root again as it just got up admissions nose and they advised me to stop ringing every few weeks and got me nowhere.

    Think I'm just really down at the moment it seems to of been one hell of a year what with the surgery well the surgery thing has been on going for the last 2 years and then with the DFG and the builders which still isn't finished. I think finding out on Friday that my toe is still broken and recovery after surgery to put it right could be anything from a couple of weeks to back to square one (which took 4 months) it just about finished me off!! Then to know I've got to do it all again next year for the other foot...... AARGGHH let's hope they learn from this one.

    Good news all being well I get my new front door with low level access threshold done today then I just need the ramps done which unfortunately are weather permitting so not sure when they will be, then just the re decorating to the hallway where it all leaked then I can get rid of builders and start to sort my house out properly!!

    Take care will keep you posted all this having to put my feet up is all very nice but is getting very boring!! (just no pleasing some people I guess!! lol!!!)

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

    Thanks for the support I think at the moment I'm struggling just to stay sane I think.
    I'm a bit reluctant to take a complaint too high in case that just gets up their nose even more. You can come and visit but from what they said on Friday it will be a visit to me at home as what they need to do they've said they will do as day surgery so I get to go home the same day.
    Will try and ring admissions tomorrow as I'm aware that Friday is a really hectic day for them so thought I'd try tomorrow and see what they say.

    How are things with you and the family anyway? Hope all is well. Take care
    love Helen xx
  • panther
    panther Community member Posts: 251 Courageous
    Hi Karen

    Well spoke to admissions today and they've found me a date but not until the 18th January. Pre op assesment on the 5th surgery on the 18th.
    So about 6 or 7 weeks time not bad for something the consultant wanted within the next 2 weeks lol!!!

    Take care love
    Helen xx
  • Guest
    Guest Community member Posts: 1,968 Listener

    Hi there Helen ..I'm Naj and had surgery about 2 yrs ago. I do hope you know and you prepared for what will happen after your opp. Pease make sure you have good support , because you are going to need it , I was unable to walk for at least 2 months after and felt very down and quite depressed, Things like bathing , going t the loo....were very hard..as you are on crutches. If you have any questions at all please feel free to ask me.
    Good Luck
    Naj.
  • VILA
    VILA Community member Posts: 29 Listener
    hmmmmm, pretty good i suppose. Of course, as you know, most staff will be off over xmas and i not sure when they close theatres down for non-emergency surgery! (usual time of year to give it a good clean)!

    Can never rush these things.............................! at least you got a date so something to work to!

    karen x
  • panther
    panther Community member Posts: 251 Courageous
    Hi Naj

    Thanks for the reply. I've coped with one lot of surgery and although I was on crutches I was not considered bad enough to need help as the hospital social worker said I could wash and dress I could cook because I could use my wheelchair in the kitchen and I could shop because I could shop on line. My local social services agreed I didn't need support because I had my wheelchair that I could use and as I don't normally have any social care input they felt it wasn't needed after surgery.

    i'm expecting this next lot of surgery to correct what has gone wrong to get the same response as since first lot of surgery earlier this year my bungalow has been made wheelchair accessible by a disabled facilities grant.

    I'm aware it maybe hard but to be honest you just get used to coping with everything on your own one way or another. My mum is talking about coming over from abroad for a few days though not sure the house is big enough for both of us think we will start to get on each others nerves!!

    Take care

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

    Yes I have a date and it's a date that no one is impressed with my gp is going to ring the consultants secretary next week she wasn't in on Friday and say she is not happy and see if they are happy with it.
    Think she is taking the view that admissions have not considered it urgent although the registrar I saw last week did say he wanted it done urgently and told admissions it needed to be done within the next 2 weeks.
    So I will wait and see not expecting anything to change but who knows the date on the 18th is as usual subject to there being a bed!!

    Take care love
    Helen x
  • panther
    panther Community member Posts: 251 Courageous
    Hi Everyone

    Yet another update!! I spent the day yesterday having another pre op assesment at Oxford ready for the surgery to correct the mistakes in the surgery from last year.

    It has now been realised that this surgery will not be day surgery as I was told in November, as for me it is actually major foot surgery. I hadn't expected that they would leave it as day surgery somehow.

    They are now going to correct the position of the screws in the left foot and possible put a metal plate across to hold them in place. They also plan to do some tests to make sure there isn't an infection there which has stopped it from healing. But they realised yesterday at last that they were probably at fault for getting me up walking the day after surgery and not taking the cp into account.

    It's surprising how they choose not to listen to me they said they would put me into this velcro shoe which would roll me onto my heels afterwards. I pointed out they tried that last time and I was still able to toe walk in it and the only part of the shoe that wore out was the toes. They just said well that's what you're be put into again.
    My friend who was with me had to intervine and say you're not listening to Helen she walks on her toes even in that shoe if you put her back into that you will have exactly the same situation a few months down the line because of her cp and her gait. Surprise surprise they listened to him and said oh well in that case we are going to need to do something different!!!

    They are now going to put me in removeable plaster casts and also going to operate on the right leg at the same time. I'm a glutton for punishment I know but I'm sick of all this in and out of hospital and want my life back so I actually asked could they do the other one at the same time.

    So now I have a few days stay in hospital and then a long recovery and both legs in plaster to look forward too. As long as I can still get to my computer to rant on here occasionally I should survive it!!!

    Take care

    Helen
  • VILA
    VILA Community member Posts: 29 Listener
    Hi Helen.

    Do you feel any better knowing that they can sort you out, it is really bad that it took intervention from your friend before they listened to you. What date have you got for admission or is that up in the air now as it not going to be a day case admission any more?

    I totally understand your frustrations and i bet you want to punch the living daylights out of somethine or someone but hang in there, they will learn from their mistakes, just make sure you get your voice heard, even if it is through a friend. I am positive that all will be fine this time.

    remember, if you don;t agree with them, don;t sign the consent form!

    keep me posted as to progress etc.,

    lots of hugs

    karen x
  • panther
    panther Community member Posts: 251 Courageous
    Hi Karen

    I'm still rather apprehensive about it all but more because I can't begin to imagine how I will be able to walk again when my toes are pined so that they don't move bearing in mind I walk on my toes I can't imagine both feet like it.

    It will be an interesting recovery for sure as social services have said even with both legs in removable casts I still don't qualify for any help. Changing my bed apparently is a domestic task!! I also enquired about direct payments as most of the time when I go out now I need a PA but as I don't have care needs I can't have direct payments. They told me to use my DLA to pay for any PAs I need to go out for the day!!

    I'm not sure about the date now they had said the 18th Jan but I'm waiting to hear from admissions as they now need to make sure there is a bed and also that there is enough time that day for them to operate on both feet. I should be in for about 2 or 3 days 5 days if they find any infection in the first one.
    I just hope they don't try and get me up walking during this time and let me go home in my chair.

    Will keep you posted when I know more. How are things with you? I want it to stop raining so the builders can come back and do my ramps!!

    Take care

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

    Just a quick update on my reply last night I've just heard this afternoon that the surgery has got to be moved back to the 15th Feb as there isn't enough time next week.

    Take care love

    Helen xx
  • VILA
    VILA Community member Posts: 29 Listener
    15th Feb then. wow. gonna be quite a day for you, will be thinking of you. i am so sorry i don;t have access to transport during the day or i would come and help you.

    it will stop raining soon, i promise!!!!!!!! not sure it will be before you go in though! i considering getting rid of our ramp as Liam no longer in his chair (apart from if we hit the shops of course) will see what consultant says on Wednesday.

    Gait analysis went well on Tuesday. He has improved so much from december 2005 when he was walking and scraping his toes as he walked, he can now start to do some walking with no GRAFO splints on which is a great step forward for him - for the first time in about 7 years we can finally get him a pair of shoes to wear - normally!

    be good. i know things will work out in the end, this is the tip of the iceberg, all gonna be fine after surgery.

    karen x
  • panther
    panther Community member Posts: 251 Courageous
    Hi Karen

    Glad gait anaysis went well I had that done years ago it was really strange. They made me splints but they weren't very well made and caused all these sores and my physio told me not to wear them which I was happy with!!!

    I know things will work out it's just 15th Feb seems a long way off as both feet are now painful. Don't really want to stay in hospital but I guess it's better to stay in a few days and get both done than have to keep going backwards and forwards with all this surgery.

    Am currently in contact with my MP he has written to social services as they have said I won't qualify for any help when I come out of hospital fair enough I guess I'll cope somehow but I'm trying to get direct payments as I'm not going anywhere as I need someone with me now when I go out and to have a PA costs me between
  • VILA
    VILA Community member Posts: 29 Listener
    keep smiling and putting posts on here, we will get you through it.

    will all be worthwhile in the end and will look back on this time and have a giggle - hopefully!!!!

    let me know what happens with your mp.

    karen x
  • panther
    panther Community member Posts: 251 Courageous
    I hope it will all be worth while in the end I keep trying not to listen to the little voice in my head that every now and then says but what if this surgery on both feet makes my walking either worse or impossible. I guess time will tell.

    Though hopefully it won't be long before I get my new E-motion wheels for my chair so my manual chair will then have power assisted wheels which should make life easier once I've got the hang of them. They should of come in yesterday but spoke to Gerald Simonds today and they don't appear to of come in yet. So fingers crossed they come in soon then I can practise with them before the surgery.

    Take care all

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

    Well the fun starts again this week on Thursday. I'm back in at Oxford to have the surgery that went wrong hopefully put right and the other foot operated on at the same time.
    I can't honestly say how I feel I think if I was totally honest with myself you wouldn't get me through the door of the hospital on Thursday morning as they still can't say how much mobility I will have once it's all done and if I'll still be able to walk.

    Many people can't seem to understand why this is such a big issue for me but I'm sure anyone reading this will know where I'm coming from just because as parents of people with cp or people with cp yourselfs you know the effort that goes into walking and be able to walk.

    Despite all this I know I have to go through with it all as the pain is unbearable especially as the painkillers are no longer as affective as they were. And I'm spending far to long in pain and in tears each day at the moment.

    Don't know how long I've got in hospital or how long I've got these removable casts on for but as they are breaking toes I assume 6 to 8 weeks. I still haven't seen the consultant since last April!! I dread to think what damage not walking for that amount of time will do. All I do know is that social services have yet again said no to putting in any help when I come home from hospital.

    Will keep you all posted on how things go this time round.
    Take care all love Helen
  • VILA
    VILA Community member Posts: 29 Listener
    To Helen

    GOOD LUCK!!! Let me know what ward you are on and will pop over - we have to come back there for splints (don't ask) to be altered again but will make time to come and annoy you.

    Am sure it will be a raging success and all your fears will be for nothing.

    Will be thinking of you.

    karen x
  • panther
    panther Community member Posts: 251 Courageous
    Hi Karen

    Will let you know what ward I'm on will post on here on Wednesday afternoon after I've spoken to admissions. When have you got to go back to Oxford?

    Good luck with it all
    love Helen xx
  • bloggergirl
    bloggergirl Community member Posts: 6 Listener
    Hi Helen
    Once you have been admitted I would make it very clear to the nurse who takes your details done the problems you are having managing at home and tell them that you don't think you will be able to manage at all after the op with the casts on. After the op point out that you can't go home as the is no help,you will be amazes at how quickly support can be found when you start 'blocking' a bed.
    Louise
  • VILA
    VILA Community member Posts: 29 Listener
    Hi Helen

    We not been told when yet, still waiting for an appointment. Went 2 weeks ago to collect new splints, had to go back on the Friday as they not fitting properly, called them on the Monday to say they STILL not right and were asked to go back last Thursday, of course with the snow we had to cancel as it wouldnt have been safe for Liam to walk in the snow and of course didn;t want to get stuck either. No news yet but would be nice for this week!!!! will chase them tomorrow. Wheelchair at school as normally bring that home on a Friday, schools were shut so wheelchair having a break in a quiet school.. Caretaker not answering the calls so guess we house bound til next week!!!!

    karen x

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