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Bunion Surgery And Cp

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  • panther
    panther Community member Posts: 251 Courageous
    Hi Louise

    Thanks for that not sure it will work my social services is sticking to it's guns that my house has been adapted so now the house is adapted I can cope in the wheelchair no matter what.
    I've been trying to get Direct Payments but again have been told I'm not bad enough to qualify I'm not considered to have critical or substantial needs because of this I contacted my MP. After contact from my MP social services have agreeed to do an assesment when I come home just to update their records!! As they still say there is nothing to be done when I come home!!

    Will keep you all posted.

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

    With one thing and another didn't get chance to post this until after scope response closed for the evening so all being well you should get it on Thursday.

    I am going in to hospital on Thursday have to be there for 7.30am!! I'm in the short stay ward due to lack of beds but I maybe moved to another ward they don't know yet. Also don't know how long I'll be in hospital for so I will post on here when home.

    If you do come over to visit my surname is Searle so they know who I am and where I am!!!

    Take care love Helen xx
  • VILA
    VILA Community member Posts: 29 Listener
    [Hi helen. By the time you read this i hope all will have been over nicely for you. will try and get a message to you on the ward.

    lots of love

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

    Well I survived the surgery and came home last night. I have both legs in removavle casts and they have managed to get me walking on crutches a little bit. Though they've told me to take things easy and use the chair most of the time for now.

    I was most shocked when one of the nurses I was talking to said the following I am surprised by you we were looking at your file and kept seeing cp mentioned, but none of us knew what it was!! When we were told it meant cerebral palsy we all said she doesn't look like someone with cerebral palsy does she!!

    Just what is someone with cp suppose to look like?? Found that coment rather worrying from the well known orthopaedic hospital in Oxford!!

    Karen thank you for the phone call feel free to come round for coffee I'm not going far over next dew months!! Karen knows the address.

    Take care will keep everyone posted.

    Helen

  • panther
    panther Community member Posts: 251 Courageous
    Hi Everyone

    Well I'm back from the first outpatient appointment after having both feet operated on. Well at first he said I could take both plasters off and start walking without them. But when we pointed out that I don't walk the same as other people and if the bones have only just started to heal was it a good idea to remove plasters yet? He decided that I have to keep the left one on for another week and the right one on for two weeks.
    But I can take them off in the shower, in bed and when not walking.

    The next battle is with community physio as they've already told me they don't know what they are supposed to be doing as the hospital hasn't told them. The hospital hasn't told them because they don't think it is necassary. They've only agreed to it because I demanded that they put physio input in.
    If they are physios can't they work out for themselves what they have got to do with someone with cp who has not been very mobile for the last 6 weeks due to both legs in plaster and this type of surgery. Or is that expecting too much from them?

    Helen
  • VILA
    VILA Community member Posts: 29 Listener
    HIYA!

    Well done on getting the plasters off! i recommend a lovely weekend in the garden with your feet in warm water!

    Am sure all will be fine this time, NHS can't make the same mistake twice can they?!!!!

    If you are very tight, have a go at Bowen - have various things about it on here, it has reduced Liams muscle tone greatly since he has been having it. Am sure you could get someone to come to the house.

    happy weekend

    karen x

  • panther
    panther Community member Posts: 251 Courageous
    Hiya Karen

    Lets hope they can't make the same mistake twice!! I've got an aromatheraphy session booked for Wednesday and now a physio session for Thursday so will see how things go. I'm hoping that in a few weeks I can renew my membership and start swimming again.
    It's just good not to be in plaster. But I've already had a number of people telling me not to rush to over do it. Don't think there's much chance of that I'm shattered have already slept for 3 hours this afternoon!!!

    Have a good weekend will keep you posted.

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

    Well the plasters are now finally off at last and I am walking but it's a slow and painful process. It feels like when your feet really ache because you've walked too much but you carry on walking.
    I don't think tight achilles tendons are helping either but I'm still battling with the community physios they still don't know what to do with me or how long I will have to wait for an appointment.

    I guess I should just be glad I'm still walking as they weren't sure of the outcome but I'm exhausted it's surprising how much effort even the simplest things are to do. I also just hope that the bones have healed a bit more and become stronger otherwise I could be doing more damange, as the hospital just told me to take plasters off and throw them away. They don't plan to x ray again until next appointmet on the 11th May.
    And 2 weeks ago they said the broken bones were only just starting to grow and admitted that as they were only starting to grow would still be soft. Oh well time will tell.

    Helen
  • panther
    panther Community member Posts: 251 Courageous
    Well I saw the community physio today. She was very nice but admitted she doesn't know what to do.
    She said the problem is we've all done cp but it was years ago as you don't work with adults with cp it's always just children.

    She is going to ask around the other physios and also ask the neuro physio if they know what to do with me and are happy to take me on she said she may even have to go to the paediatric physios as they are usually the only ones to work with cp.

    Though she did say my hip, back and knee pain in other words all the ageing related pains could get worse as my feet have now been forced to be flatter as I can't go on my toes anymore it's forcing me to turn my hips and I think my knees more inwards. Which she said will put further strain on my hips and back.
    The vice like pain around my foot in the ankle area she thinks could be permenet but can't remember the physio explanation for it now I think it was something to do with the forced limited movement there now is in my foot and the already tight achilles tendons.

    It just seems like if it's not one thing it's another think I'll be glad when this week is over.

    Helen
  • panther
    panther Community member Posts: 251 Courageous
    A new week a new round of appointments. Oh why can't life be straight forward and pain free at least for a day is that too much to ask?

    Went to GP as left foot won't take any wieght. Foot apparently has gone into spasm she thinks from the amount of time in plaster. Solution physio but she thinks it will take a long time to get back to what I was prior to surgery. GP also thinks now both feet have been operated on you can see that it's putting more strain on my hips knees and back as feet apparently turing inwards now can't walk on toes.

    Off to paediatric physio tomorrow as no one in adult physio services knows what to do with someone with cp!! They seem to forget that all these children out there with cp grow up. Will this physio help who knows. I know now that if I'd known a year ago what I know now I wouldn't of had this surgery done. It's taken over my life for the last 3 years and looks like it's affects are going to be lasting for a long time.

    If anyone has any spare sanity or sense of humour please pass it this way. If not tissues and chocolate will do!! Then again on second thoughts if I had a nervous breakdown would I then have mental health problems and then qualify from help from social services and direct payments?

    Will let you know how tomorrow goes.

    Helen
  • panther
    panther Community member Posts: 251 Courageous
    Well went to paediatric physio and she doesn't know what to do either. So the physio assigned to me said can you get some feedback from the consultant.
    So yesterday I rang the consultants secretary and explained the situation she said that's fine the consultant is in tomorrow get the physio to ring me in the afternoon and I'll give her a break down of what he wants.

    Tried to ring physio this afternoon but got no answer and she is on annual leave from tomorrow so I decided to ring the secretary myself to see what she has told the physio.
    Turns out she didn't speak to the consultant she spoke to the regisitrar who apparently said why is she having physio we didn't reffer her. I told the secretary that the hospital had reffered me and she said well Mr Jones has said you don't need physio you've just got to start to walk again!!! I said that's the point I can't as one foot doesn't want the weight put through it. And she said well Mr Jones has said there is no need for you to have physio you don't need it you've just got to start to walk again and he will see you at your next outpatient appointment.

    I give up I no longer know what to do this hasn't helped the comunity physio and for all I know she may well say the hospital are saying you don't need it so we don't need to continue. If I go to my gp who can she reffer me to when the community physio has already discovered that no one locally knows what to do with me anyway as I'm an ADULT with cp.

    Helen
  • panther
    panther Community member Posts: 251 Courageous
    Have been to my second outpatient appointment today so thought I'd update you all.

    Both feet are healing apparently the pain I have in my toes and around the areas of surgery are normal. But the consultant did say that for some reason people with neurological problems like cp, spina biffa etc do seem to have increased pain whenever you do surgery. So he thinks that is why I'm in so much pain.

    After saying I didn't need physio he has now said the pain in my left foot around the ankle is probably due to being in plaster for so long. So he has referred me to Oxford for physio for 6 weeks to get me mobilised.
    He said if this doesn't get rid of the pain I may need an insole made and put in my shoe. As it maybe that I've now been made too flat footed on that foot by the surgery now.

    I've also noticed that my other toes on my left foot have started to go under. I asked about this and if it was lightly to cause problems in the future. He said they could well do. He said it's to do with where they made my toes shorter last year by placing pins along the bottom of them all and the curling under of my toes is to do with tight Achilles tendons.

    So further surgery maybe needed at some point. He said lengthening the Achilles tendon would be a last resort. As it is risky surgery to do in an adult. But we may have to bring you back in and fuse the toes straight so break my toes again and put pins in to make them straight. I can see me definately needing this surgery at some point.

    I'm also still not allowed to walk too much at the moment as my toes aren't healed enough yet to take too much weight on a permanent basis. He wants physio input first. He said it will take at least a year from now to recover from the surgery I had in February.

    I'm a bit shell shocked I hadn't realised that what can be normal straightforward surgery for an able bodied person can have such a long term knock on effects for someone with cp. I go back for a further follow up appointment in 3 months.

    Take care

    Helen


  • panther
    panther Community member Posts: 251 Courageous
    Hi Karen

    No it's 6 weeks once a week so up and down for treatment which will be a pain as I don't have my own transport and they got funny yesterday when I said transport would more than likely be needed.

    Think I was more thrown by the probably need for more surgery as a knock on effect of this one. That really threw me wasn't expecting that.

    Glad Liam is doing well does he find that he gets tired quickly as he's been recovering I'm exhausted!!

    Take care love Helen
  • VILA
    VILA Community member Posts: 29 Listener
    Hey Helen,

    Thanks for the update. Sounds quite positive really to me but then i am not the one in pain. Physio's at oxford are great - will this mean an up and down for physio once a week for 6 weeks or will they be able to admit you for 6 weeks intense physio?

    It does take a while to progress following surgery, 8 months on and Liam is doing well but still got a way to go.

    hang in there, you will be ok but it is a long process on this road to recovery.

    karenx

  • VILA
    VILA Community member Posts: 29 Listener
    Hiya!

    he not quite so bad now but obviously still can;t walk very far - although tomorrow he may have to as we off to the new childrens outpatients at the new childrens hospital at the JR. He left his chair at school so if it is a trek he gonna be shattered - tough i say! - we going for a head check-up as he been getting a lot of headaches and his shunt could be playing up. here we go again!!!!!!

    As long as transport is booked in advance, there really is nothing they can do about it - i think they need a week's notice don;t they - they will find any problem they can to stop helping. of course, if they provided physio at home once a week to the same degree it wouldn't be a problem.

    let you know how we get on.

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

    Good luck with it tomorrow let me know how it goes. If you were nearly I'd say you could borrow my chair save on the walking. As I don't need it tomorrow got a day of sitting indoors waiting for a delivery between 7am and 6pm lol!!

    Hope it goes ok and hope you aren't getting back on the merry go round of hospital visits. That's what I feel at the moment that I'm too old to start the trek of regularly hospital checks and further surgery etc. But it's all fun and games I guess.

    Take care love Helen xx
  • VILA
    VILA Community member Posts: 29 Listener
    Hiya Helen.

    He managed the walking bless him and i can thoroughly recommend the new Oxford Childrens Hospital. It is so light and airy and welcoming. everyone had a smile on their face (staff) and the car park was easy to find and had a space right out the front waiting for me! all very well signposted and someone on reception to help as well.

    Anyway, he got to be admitted within the next 2 weeks hopefully to have intra cranial pressure monitoring done (again). They feel the pressure could be too low in his head, causing the buzzing noises and headaches. He a bit concerned about it but i am holding on to what i hope is just hormone related headaches - although the major headaches he had a while ago were definitely shunt ones!

    ho hum.

    karen x




  • panther
    panther Community member Posts: 251 Courageous
    Hi Karen

    Ah bless him!! Sounds like between us there could well be a number of trips backwards and forwards to Oxford at the moment. How long would he be admitted for?
    At least from what you've said the hospital sounds nice if hospitals can really be a nice place to be lol!
    Have you seen the new part of the Nuffield yet? That is now open and looks very nice from what I've seen of it when I've done my last 2 out patient appointments.

    Will keep my fingers crossed for him. Take care
    love Helen xx
  • VILA
    VILA Community member Posts: 29 Listener
    Hiya.

    should only be in for the day, but possibly overnight - could mean an early start but am getting used to them and prefer to do the M40 at 7am!!!!!!

    Have seen Nuffield new bit, yes it is lovely. very spacious at the moment. not seen new childrens ward yet though - hope we don;t have to for a while, the JR is enough for me to cope with at the mo.

    ta for your support

    karen x
  • panther
    panther Community member Posts: 251 Courageous
    Hiya

    I had to go past the childrens ward last week as I was heading down to put in my physio refferal it looks bright and cheerful I said to the friend I was with can I go in there next time it looks more fun!!
    Am back up there on Monday as I've got a physio appointment. It's only for an hour and then any followup appointments are only 30mins.

    They weren't keen when I said I'd need hospital transport they've asked me to make my own way there for Monday as although the consultant wants 6 weeks of physio they said the physio may think otherwise and think you don't need 6 weeks. I said they will need to do transport for follow up appointments but they said we only do transport if it's considered an essential medical need for you to have it!!!
    I've spoken to the community physio that saw me a few weeks ago and asked her if Oxford talk to her about what is needed would she be able to come back out and do the rest of the treatment at home if Oxford aren't keen. She is happy to do this so will have to see what happens on Monday.

    Take care have a good weekend

    Helen

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