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Bunion Surgery And Cp

GuestGuest Posts: 1,968Member
edited May 2014 in Cerebral Palsy
I have spastic diplegia that affects both my legs and I have bunions on both my feet. I'm due to go in to hospital for the first lot of surgery to remove the bunions in a couple of weeks.

At my pre op appointment I discovered that this surgery was a lot more major than I'd been led to believe as they are going to be breaking, straighting and pining my big toe and then breaking and moving all my other toes on my left foot.
This means that they are adjusting both points of balance by moving both my big and little toe. I'm very worried as the consultant has told me that becaie of the cp there will be complications but he doesn't know what until he does it.
Also I'm worried about what affect moving my toes will have on my balance, my balance is bad enough as it is and I can't begin to imagine what it will be like learning to walk again after. Or if I will be able to still be as mobile as what I am now after.

I know that these are all questions that people probably don't know the answers too but it doesn't stop me being worried and scared by them. I wondered if there was anyone else out there that has had this type of surgery done before and what it was like and what effect it had on your walking etc....

Any advice or expierence would be good to hear.
Thanks

Helen
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Replies

  • pantherpanther Posts: 251Member Courageous
    I have spastic diplegia that affects both my legs and I have bunions on both my feet. I'm due to go in to hospital for the first lot of surgery to remove the bunions in a couple of weeks.

    At my pre op appointment I discovered that this surgery was a lot more major than I'd been led to believe as they are going to be breaking, straighting and pining my big toe and then breaking and moving all my other toes on my left foot.
    This means that they are adjusting both points of balance by moving both my big and little toe. I'm very worried as the consultant has told me that becaie of the cp there will be complications but he doesn't know what until he does it.
    Also I'm worried about what affect moving my toes will have on my balance, my balance is bad enough as it is and I can't begin to imagine what it will be like learning to walk again after. Or if I will be able to still be as mobile as what I am now after.

    I know that these are all questions that people probably don't know the answers too but it doesn't stop me being worried and scared by them. I wondered if there was anyone else out there that has had this type of surgery done before and what it was like and what effect it had on your walking etc....

    Any advice or expierence would be good to hear.
    Thanks

    Helen
  • pantherpanther Posts: 251Member Courageous
    Hi

    Just an update to this post in case it may help others in the future. I've now had my surgery on one foot and surgery wise there were no complications. I'm just very bruised and very tired and having to walk with crutches and a special built up shoe that makes me go back on my heel to stop too much pressure going through my toes.

    Don't know if the cp will present a problem later on in recovery when I'm trying to walk in my shoes and with out crutches as that's when I assume I will find out if my balance has been affected by my toes being moved.

    Despite the consultant saying I could be in for a number of weeks I was in and out after 5 days they had me up walking with a frame the morning after surgery!! And I came home yesterday.

    Intrestingly it was the nurses and the physios that kept asking me could I move my toes or move my foot in certain ways and not really understanding that no I couldn't because of my cp. The physio also didn't like the way I used the crutches I was told I had bad habbits but the way she wanted me to use them felt really unsafe for me again because of the cp and also the special shoe that they are making me wear.

    Will keep you posted.

    Helen
  • Helen, thanks for the update. I keep my fingers crossed that it gets better and better!

    Kat




  • pantherpanther Posts: 251Member Courageous
    Hi Lynne

    I agree with you though at the moment I've been sent home with no exercises from the physios just a pair of crutches and a special shoe that rolls me back on to my heel so I can't put too much weight on my toes.

    As you can imagine that has taken some getting used to as because of my cp I've never walked on my heels always up on my toes. The physios and nurses kept wanting me to wiggle my toes my again the cp has never let me be able to do that.

    I'm sure fun and games will start when I go back in about 6 weeks when they x ray and hopefully try and put me in proper shoes and try and get me walking without the crutches. That is the bit I'm not looking forward to as I am scared as to what this surgery will of done to my balance.
    And the best bit is that at some point soon I have to go through it all again for the other foot. Oh joy of joys!!

    Will keep you all posted. Take care

    Helen
  • GuestGuest Posts: 1,968Member
    Hi Helen,
    Just wanted to say good luck with getting back on your feet and finding your balance again.
    I must say I was surprised to hear of your experiences with the nurses and physios. I mean, You'd have thought they'd be more understanding that your CP will affect the way you can do excercises etc.

    best wishes,
    Lynne
  • bloggergirlbloggergirl Posts: 6Member
    Hi
    Would it be worth asking if you could see a neuro physio instead of an orthopedis physio,they should have a better understanding of the impact of the CP on your movemant patterns.
    Paul
  • pantherpanther Posts: 251Member Courageous
    Hi Paul

    Thanks for that I hadn't really given it much thought I'll mention it to the consultant when I go back in 6 weeks time. I guess I thought the physios would of understood as my consultant had said the physios had a lot of expierence of working with people with cp. One of the senior physios I saw did seem to understand that the way I was using the crutches wasn't so much bad habits more the way that made me feel safest on them.

    Helen
  • pantherpanther Posts: 251Member Courageous
    I guess I should of known I was getting off lightly with this surgery so far!! Since the stitches came out my foot has been far more painful and I think the pain is more nerve related than anything else as I have no pain at all and then it suddenly starts to hurt or my foot will suddenly jerk and it really hurts.

    Because of this it is now starting to have a knock on effect on the cp as I'm not getting very much sleep at night time and there have been a few times when my other leg has been shaking and not very stable just partly because I am over tired. Also I can feel my muscles are getting tight as well which isn't helping.

    Balance still doesn't seem to of improved if I'm somewhere where there is nothing to hold on to. I'm finding it all really hard going now even though it has only been 3 weeks. I have been moaned at for over doing it but then that is hardly surprising as I live alone and was offered no support from social services.

    Will keep you all posted on progress have my first outpatient appointment on the 16th not sure how I feel about that as I guess that's when the real hardwork of physio will start.

    Helen
  • scottscott Posts: 3Member
    Might be silly of me to say, but I was beginning to feel like I was the only one who suffered like this. Seeing as this is my first post, this could be somewhat long winded - very sorry!

    I'm 17 years old, and I have cerebral palsy. It's a very mild form so I'm told, it mainly affects the way I walk. I did walk up on my toes; my left side was worse affected, but when I was 7 I had surgery on my tendons, and they're flat (flat feet in all senses of the words, I crushed my arches long ago!)

    I have bunions on both my feet, the left one is worse - they have been developing since I was 11 - I've always had to wear ill-fitting shoes because I have a size and a half difference in my feet - and I'm a young girl, I reserve the right to be fashion conscious, I'm not ridiculous, I know heels are out of the question, but just recently the state of my feet have been getting me down. My mum told me to consider surgery, but it sounds like a great ordeal - and I also have a massive needle phobia that arose when I had my tendons surgery.

    And having to learn how to "work" my readjusted feet as it were.... well I obviously have problems with balance as it is - and is it a given thing with CP that you launch yourself forwards a little, ie, sticking your backside out too far, almost in preperation for a fall, because that's what I do! - would my posture, and the way I hold myself change just because my feet had? I'm not too sure, and I think a lot of that is how my bunions arose in the first place.... am I wrong?

    And would anyone recommend the surgery, I mean, are the bunions likely to get bigger?
  • pantherpanther Posts: 251Member Courageous
    Hi Jolene

    Like you I also had tendon surgery as a child but I still walk up on my toes probably even more so now as my tendons have gone really tight again and they don't do tendon lengthing on adults. I think this is part of the reason as to why I had my bunions in the first place as I tended to put all my weight on my toes and the ball of my foot. Like you I also had the bunions from a very young age.

    I can't say if the bunions will get bigger or not I can only go on my expierences so far. On my left foot because of the bunion my big toe was really going over and it was pushing the toe next to it under it was also causing all the other toes be pushed along and caused a corn on my little toe and the little toe and the toe next to it used to rub together and get a buid up of hard skin that got very sore.

    On my right foot the big toe is going over and coming upwards as well as pushing all the other toes over.

    It took me 3 appointments with 3 different consultants before I found one that was expierenced and had the understanding of cp to know he could do this surgery. I only agreed to go ahead with the surgery when he pointed out to me that if I didn't have the surgery done it would be the bunions that put me into a wheelchair full time. As I would be unable to wear shoes because of what was happening to my other toes.

    I decided that to end up in the chair full time because of bunions was a silly reason to end up in the chair for especially if there was surgery that may help.
    I can'[t tell you too much yet about the recovery and how my balance has been affected and if it was worth it as I'm only 4 weeks into my recovery and it takes 8 weeks. I go to my first outpatient appointment on Tuesday so will hopefully know a bit more then.

    At the moment I'm on crutches and wearing a special shoe that rolls me back on to my heel to prevent too much weight being put on my toes. (though I think I've learnt to walk on my toes in it!!) After about a week and a half I've learnt to walk indoors without the crutches and last week (4 weeks on) I've been able to walk down my front path without the crutches. I have been out walking with one crutch and I can do it but it's slow at the moment. With my walking stick I again I can do it but I don't feel as steady as I used too.

    At present I don't regret having the surgery done and I have to go through it again for the other foot. I will post further updates on how things are going once I'm trying to walk properly etc. I guess my only advice would be make sure if you went ahead with surgery that you went with a consultant that knew what they were doing and had an understanding of cp. I don't know where you live but I had my surgery done at the Nuffield orthopaedic hospital in Oxford under a Mr Paul Cooke if that is any help to you.

    Take care

    Helen
  • pantherpanther Posts: 251Member Courageous
    Hi All

    Well I've done the first out patient appointment and am really frustated I was kept waiting for 2 hrs before I was seen. At one point a doctor picked my file up as I saw him reading the notes and keep mentioning something a bout cp to another doctor but I couldn't hear what. He then put my file down and called someone else, and let the other doctor see me later!!!

    Recovery apparently is going well but going to be longer than 8 weeks. I'm still on the crutches and still in the uncomfortable shoe though I think I've learnt to walk on my toes in it!!! After two weeks I can walk in doors bare footed but when I go out must put either the shoe or open toed sandals on. Very little chance of open toed sandals as I can wear them with out scraping my toes.

    I hadn't realised that I have screws in all my toes except the little toe and all my toes apparently have been made slightly shorter. In my big toe need where the bunion was there is two screws that cross over each other, one of these screws as moved slightly and they are not sure why. They have to keep an eye on this if it moves anymore they may have to take it out in a few months.

    I still don't really know how my co will be affected as it is too soon to start physio so all I can do is wait and see what happens in 6 weeks time when I go back for the next appointment which will of made my recovery 11 weeks and counting.

    The thought that I have to go through it all again for the other foot at the moment doesn't bear thinking about!! lol

    Helen
  • pantherpanther Posts: 251Member Courageous
    Hi Everyone

    Well I give up!! I've been walking without the special shoe on indoors for 2 weeks now and all the bruising is coming out again on my big toe!! If I go out I still have to wear the special shoe and use the crutches.
    At my outpatient appointment in May they said it was too soon to start physio and that it will be a long time before I can wear a normal shoe on this foot. Also I still don't know if one of the pins needs to come out as it may of moved again, I think it has it feels like it has.

    So what do I get in the post today an admission letter for the second lot of surgery on the other foot for the 21st June!! I've told them they've got no chance of me accepting it as I can barely walk after the first one yet!! So now I have to discuss it at my appointment in July.

    It makes you laugh I waited 11 months for the first lot of surgery and just over 8 weeks after they are offering me the second!! They clearly hadn't factored the cp into the timescale of my recovery!!

    Will keep you posted.

    Helen
  • pantherpanther Posts: 251Member Courageous
    Hi Lynne

    Thanks for the support yes I know you are right I'm getting there all be it slowly. Although I do seem to be having problems as before the surgery because of the cp I walked up on my toes. I'm begining to wonder if this is why i'm having so much pain with my big toe now.

    As I know they have put pins in my big toe and the consultant said once the surgery was done I wouldn't be able to bend my big toe but would have more movement from side to side. I'm now wondering if without the special shoe on that I'm trying to go up on like tip toes to walk as I used to walk and putting pressure on my toe as it can no longer bend to go in that position.

    I guess the x ray on the 11th July will tell us more. But I know the consultant didn't know what affect the surgery would have on the cp and how it would affect my walking, I'm starting to wonder if it may make me more reliant on my chair as I can walk for a bit and then my toe really starts to hurt. And if in time I have both feet in that situation will I still be happy and able to walk comfortably. I guess I'm at the point that no one knew the answer too of how the surgery would affect the cp and my walking.

    Will keep eveyone updated here when I find out anymore.

    Take care

    Helen
  • GuestGuest Posts: 1,968Member
    Hi Helen,
    Ouch on the bruising :-(
    Sounds like an uphill struggle, but, you're getting there!!!
    Hope the errant screw sorts itself out.

    I had to laugh about the timing for the 2nd surgery.
    It's because you're in the system now.

    Hang on in there,
    Hop-a-long :-)

    Lynne
  • pantherpanther Posts: 251Member Courageous
    Hi Everyone

    Well I guess progress is being made by the end of this week I have managed to get into my ordinary shoes at last!!

    Although it does feel strange when I walk now. There are times when I try to walk on my toes but can't really as the pins in my toes and foot stop me and my foot and big toe start to ache. Then I'm not sure what I'm changing my walk too but to me it feels very stiff legged if that makes any sense.
    My balance doesn't feel that good at the moment hopefully it will settle down again and I also feel that I'm walking slower than I used too.

    At least now I can wear a proper shoe I can start to think of having the other foot operated on oh joy of joys got to do it all again. Good job we only have two feet don't think I could do it more than twice.
    The only bad thing I've noticed is the change in my walking seems to be putting a strain on my back. Oh well I guess time and patience will tell the true outcome. Pity I'm not the most patient of people!!!

    Take care

    Helen
  • pantherpanther Posts: 251Member Courageous
    Hi Everyone

    I'm a bit down at the minute I went to the gp yesterday for more painkillers as my back and hips really hurt now I'm walking again. As soon as I walked in the gp comented on how much my walking had changed and not for the better!!

    When I described to her what it felt like now when I walk and the pain I was getting in my back and hips she said it was to be expected as my toe had been fused together and when they fuse something it is to make the outcome permanent.

    I picked her up on this by saying so basically you are telling me my walking will always be like this as I'm going to be unable to get the movement back in my big toe. What will my walking be like when the other foot is done then? Gp immediately started to back down and tell me it was too early to tell...

    So I rang my old physio who is now a friend and spoke to her as she is comming with me on the 11th back to the hospital. She said what I was getting with my back and hips was to be expected something about I was now trying to compensate and weight bear more from my hips or something and a rather technical physio explanation which I didn't really follow.

    But she did voice what the gp wouldn't and told me that the change would be permanent as the toe had been fused and I said I guess walking once the other foot is done will be very difficult then but she has said it could either be very difficult or near impossible.

    I'm really not sure how I feel at the moment as the surgery has been going so well so far I guess I didn't think it could go wrong now. But I don't think I have a choice about the other foot as the consultant believes the other foot is worse. And he told me if I didn't have the surgery done I'd end up in my wheelchair full time because I wouldn't be able to put shoes on.

    I don't feel that I can say no to the other surgery because of that but also because it would of meant I've gone through the first lot for nothing but it now looks highly likely that I'll end up in the chair possible full time after it all anyway.

    Am very confused and emtional about the whole thing at the minute. I guess I knew there was a risk this could happen but didn't believe it would as was doing so well. I guess this is the unpredictable part of the equation that have cp threw into the situation. At the moment I can't help thinking the future could be very bleak. I'm even got that down that I asked one of my closest friends if they'd still be my friend if I was in my chair full time!! Shows how all over the place my head is at the moment.

    Sorry to ramble but there are very few people I can really talk too that understand why I'm reacting like this. Or who want to accept that this might be what the future wil be eg(parents).

    Take care

    Helen
  • pantherpanther Posts: 251Member Courageous
    Hi Everyone

    Well I went back to the hospital this week. I amazed the consultant by being in ordinary shoes apparently he hadn't expected me to of got that far yet and also by being back to walking just with my walking stick rather than crutches.

    Surgically they are saying the surgery has been successful and the x rays are fine. When I mentioned the problems I have expierenced with the cp now I'm in shoes he just shrugged his shoulders and wasn't really interested.
    Because I've done so well there is not going to be any physio put in although I think it could be useful and I'm diwn to have the other foot done in 3 months time. Not sure how I feel about this as I said in my last post but I guess it needs to be done.

    Take care

    Helen
  • pantherpanther Posts: 251Member Courageous
    Hi

    Well it's now been 4 months since my surgery and I can't say I've made that much progress. It seems just as I feel I'm getting any where with things I go back a few spaces.

    Some days I can walk, indoors I'm making good use of the furniture and the door frames for support or using my chair. Outdoors I have to have my stick or the chair or the arm of a friend!! But it seems that somedays I can do things with out too much pain and the next day even the slightest step hurts. Even simple things like kneeling down on the floor or sitting on the floor have become a perfomance of trial and error.
    Also there are times when I go to stand up from sitting and my foot just doesn't seem to want to take the weight and I fall down with no with no warning. I just regularly walk about now saying ouch that hurt, ouch that hurts with nearly every step!!!

    The gp is unable to tell me if this will get any better in time they just keep saying increase the frequency of the painkillers amd hopefully this one will be a bit better before the other foot is done.

    Helen
  • pantherpanther Posts: 251Member Courageous
    Hi Evelyn

    Thanks for the reply I think it just one of those days today I'm getting frustrated with everything. Hopefully the foot will improve but the difficult thing is that no one can tell me how much of the pain and problems I'm having now is permenent and how much of it will improve or go with time.

    I guess having my house still in a mess due to builders that are no where to be seen this week doesn't help things either lol!!

    Take care

    Helen
  • VILAVILA Posts: 29Member
    oh helen what are we going to do with you?

    GP not really helping much is he, but then he doesn;t understand how frustrated you are with every day being so different to the last.

    i hope you find some answers soon, before you totally lose the plot.

    will be round for coffee as soon as am able!

    karen x
  • GuestGuest Posts: 1,968Member
    i really hope your foot improves and you can get some relief from the pain, it must be awful.
    please keep us posted on how you are doing and as hard as it is try to stay positive.
    lots of love
    evelynxoxo
  • pantherpanther Posts: 251Member Courageous
    Hi Karen

    Think I might of already lost the plot but with the builders and south bucks council. Tell Karen she might have a wait on her hands as they've got to re do my shower floor as I'm getting a load of water pooling at the opposite end of the shower!! And my ramps haven't even been started, and I'm arguing about a low level threshold being put on the front door as builders didn't quote for that as they had been told the front door wasn't being changed!!
    Without the door being changed and a low level threshold I can't get in!! Yet again have the ot to thank for this little mishap as she said the door didn't need to be changed.

    With all that going on pain in my foot and the odd fall without warning is a distraction at least I know what to do about those. With the builders and south bucks council I'm in their hands. Oh and rather than sort out the funding issue for my front door ramp etc the guy from the council has gone on holiday!!!

    How's things with you? How's Liam doing? Look forward to that coffee it might restore some sanity!!
    Take care

    Helen x
  • VILAVILA Posts: 29Member
    Just when you thought you were getting somewhere then?!!

    OT's - some are good but others need to look at the bigger picture don;t they? need to spend at least 24 hours with their 'patients' before saying what their needs are!

    I am ok but have had a bad week, am being tested for breast cancer on 11th September!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    Oh, went to weight watchers last night - been 6 weeks since i last went and i had gained..................17
  • pantherpanther Posts: 251Member Courageous
    Hi Karen

    Sounds like your week has been worse than mine. I forgot to say I spent nearly all of wednesday asleep!! The gp had said increase how often I took the painkillers which I didn't, but Tesday night I took the normal dose as felt I needed it at 9pm then slept till 10am Thursday morning was really tired and fuzzy headed all day went back to bed at 1.30 and slept till 4.30 then still slept till 8am the following day!!!

    Sorry to hear that you have to be tested for breast cancer on the 11th I'll keep everything crossed for you hope all goes well as I said your week sounds worse than mine I'm just fed up with everything.
    As for weight watchers with everything else that you've had going on I'd say so what and make that bucketful of coffee a bucketful of hot chocolate with whipped cream!! lol.

    Glad Liam is doing so well but you take care and let me know how things go on the 11th.

    Take care
    love Helen x
  • pantherpanther Posts: 251Member Courageous
    Hi Everyone

    Well I thought things were going too well!! Have got to go and get my foot x rayed tomorrow as I have a fluid cyst or a friction cyst on the foot that was operated on. The gp thinks the pin may of moved again and the friction from that is causing the cyst. If the pin has moved then it's back into hospital to have it removed! joy of joys.
    The other foot is really painful keep getting a lot of pain from the other bunion pain keeps shooting through that then making my leg jerk.

    Am begining to think I'm falling apart!! Will keep you posted.

    Helen
  • VILAVILA Posts: 29Member
    Hi Helen!

    I think you are falling apart - no seriously, hope you get sorted soon. you have been through so much already this is not what you needed.

    Hope it went ok with the xray, let me know. of cours, the best thing for pain is chocolate - and lots of it!

    karen xx
  • pantherpanther Posts: 251Member Courageous
    Hi Karen

    I don't know if I'm coming or going I feel totally shattered one way or another. It's getting to that time of year when all the aches and pains with the cp start up so to have problems with my feet is the last thing I needed.

    Had the x ray Friday afternoon the person doing the x rays took 3 different x rays and say that the cyst is right over the top of the pin, but she can't tell if it has moved or not as she hasn't seen the orignal x rays taken after surgery at Oxford.
    It will take 7-10 days for my gp to get the results back of the x rays, but at the hospital yesterday they did say it might be that I need to go back to Oxford with these x rays on disc for them to compare them.

    Personally I can see me needing to go back in and have it taken out as it is painful and just at a point where my shoes press against it. The gp did say if we don't do something it will only get worse. And I am tending to use my chair more and more even in doors as it gets too painful to walk.

    I feel like I'm just going through the motions of normal day to day life at the moment for the sake of everyone else and sleeping the rest of the time as overall all the pain from everything is making more tired not to mention the incresed painkillers adding to the affect!!

    My mum said she wonders if they will do the other foot if I have to go in and have the pin out, but I don't really know what having a pin removed will involve and what I will be like when I get home to know if I could cope with the other foot being operated on at the same time.

    Never mind it gives me something else to think about other than my on going building work. How is Karen getting on have they started yet? Foot hurts too much to wander round and see how she is doing!!

    What about you and all the family are you doing ok or are you joining the rest of us in feeling old and falling apart? lol!!
    Chocolate sounds a good solution but I've got toothache too!! Off to the dentist on Monday to have a tooth out!! Maybe a cup of tea a good book and bed is my best option!!

    Take care will keep you posted love Helen xxx
  • pantherpanther Posts: 251Member Courageous
    Hi Everyone

    Well the x ray results are back today and as expect one of the screws in my foot has moved. It's moved considerably apparently so I guess it going to mean going back into hospital for it to be taken out.
    The gp has notified the consultant of the outcome of the x rays so now all I can do is wait to hear from them.

    I'd figured out that much for myself today as I've noticed in the last few days if I'm standing still I'm tending to lean on the part of my foot where this lump is.

    Oh happy days I think the phrase here we go again springs to mind.

    Take care all will keep you posted

    Helen
  • VILAVILA Posts: 29Member
    well, bad news then really, but at least you know now.

    hope they don't keep you waiting too long. let me know when you in and i come and annoy you! will bring chocolates i promise oh, and a takeaway starbucks!

    karen x

  • pantherpanther Posts: 251Member Courageous
    Hi Karen

    I will let you know when I'm going in hope it won't be long as it does hurt and I'm using my wheelchair more and more. The sooner I get my electric wheels the better hopefully my fundraising thing will pull in some much needed funds. Don't know if you buy the Bucks Free Press but I think they are supposed to be putting something in about it this week (my claim to fame!!).

    Don't know how long it will take to sort my foot out apparently I'm on the waiting list to see the consultant and will be sloted in when he has space but the secretary couldn't tell me when that would be.
    I also don't know how they remove screws and how I will be when sent home again. It's all good fun i guess have to tell myself that or I'll cry!!

    How are things with you? Hope all is well take care

    Helen xxx
  • pantherpanther Posts: 251Member Courageous
    Hi Karen

    How are you? Hope all is well. Just a quick post to let you know that I've got an appointment to go to Oxford on the 24th November to see the consultant so that he can see my foot for himself and take his own x rays etc.
    Can't come soon enough for me I haven't been out all week then walked/wheeled to sainsburys this morning by the time I got home I could barely walk across the room and had to hit the painkillers and lie down for a bit.
    Hope whatever he decides on the 24th he won't take long to decide when to do it but I am scared of what he might say.
    Will keep you posted on how it goes. Take care
    Ps Has Karen finally got her builders back could hear some work being done today sounded like it could of been there. Hope it is for her sake.
    Take care

    Helen xx
  • VILAVILA Posts: 29Member
    Hello You!

    I am fine thanks, shattered but there we go - almost xmas!

    Well done on getting your appointment through, hope that he will sort you out quickly, they normally work a bit faster over there than they do here at WGH!

    Not sure what is happening with Karen, not spoken to her since she texted me to tell me that her holiday went well and she managed to avoid any of the party being admitted to hsopital - i think that is a first for her family!!!! Am sure she will be in contact soon!

    Good luck on 24th, will be thinking of you.

    Karen x



  • pantherpanther Posts: 251Member Courageous
    Hi Karen

    Don't mention that xmas word I've told people they might not get present depending on my foot!!
    Need to get next weekends fundraising thing and then the 24th out the way before I can starting thinking xmas!!

    Hope they don't take too long to decide what to do about foot and do it as some days I can barely walk for the pain it's a case of smiling through gritted teeth at the moment!! Will keep you posted.
    Take care

    Helen xx
  • VILAVILA Posts: 29Member
    Hi Helen.

    Spoke to Karen and yes it is her with the builders!!! All moving nicely now for her.

    She says she will try and call round this week to see you.

    Look after yourself. keep smiling

    karenx
  • pantherpanther Posts: 251Member Courageous
    Hi Karen

    Glad to hear that Karen finally has her builders there. The friends that are organising this fundraising thing on Saturday live in 3 doors down from me and back on to Karens and I saw them yesterday and they said that it looked like things were finallay happening at Karens.

    Am still smiling just although it's often through gritted teeth at the moment!!
    Take care

    Helen x
  • VILAVILA Posts: 29Member
    keep gritting the teeth then, will be all over soon.

    k x
  • pantherpanther Posts: 251Member Courageous
    Hi Everyone

    Well been back to the hospital and no wonder it hurts the toe is still broken!!! I will explain a bit more so it makes sense.

    Apparently when they did the surgery the plan was to break my big toe and put screws in place so that my big toe could not move at all.
    The bone would of then healed over the screws keeping the screws in place.

    For reasons that they are not sure of the broken bone started to heal but didn't heal completely and because the bone was still soft the screw was able to move. This has meant that when the screw moved there was nothing supporting the broken part of my toe so in affect I have been walking around on a broken toe for the last few months hence the pain!!

    They've said I need to go in urgently the consultant would like it to be within the next 2 weeks and they will put it right and possibly then put me in plaster to hopefully allow it to heal properly this time. But admissions are saying that there is no space and I may have to wait until after Christmas.

    Will keep you posted.

    Helen

  • pantherpanther Posts: 251Member Courageous
    Hi

    Just wondered if any one has any advice. I saw my gp today and told her what happened on Friday (see post before this one) and she said it's not down to me to keep ringing admissions it's for the consultant or the consultants secretary to sort out.

    She said even as my gp she wouldn't hold any weight in getting me in quicker. So came home and rang consultants secretary and told her what had happened on Friday and that the consultant wants me in within two weeks and admissions are saying no chance. I asked her if it was down to me to keep ringing admissions and should it not be coming from the consultant.
    Her reply was that the consultant doesn't have any weight with admissions either and that it's admissions the hospital is answerable too and if they have said there's no chance this side of Christmas it doesn't matter who asks for the slot it won't change things. I just have to hope for a cancellation but bear in mind that all the other consultants urgent cases are also waiting for cancellations.

    My mum can't believe they sent me home with a broken toe and a loose screw nearly sticking through my foot and just said try not to walk too much. She said are you supposed to put up with that until after Christmas I've said it looks that way.

    Just wondered if any one had any advice on what I can do if anything. Thanks this is really starting to get me down now I've had a broken toe since April and they've only just found out!!!

    Helen
  • VILAVILA Posts: 29Member
    Hello!

    Well what a state you are in................again!

    Basically, yes Admissions are a law unto themselves, the consultant can request a 2 week slot but if there aren;t any then that is that (unless life threatening of course).

    GP can write to admissions on your behalf and put them in the picture (all they get is your name on a piece of paper and what you coming in for), so that MAY jump you up the list a bit.

    Basically all you can do i think is keep pestering the Admissions office until they finally give in and give you a date! You can write to the complaints dept at the hospital and see if they can get you in earlier, explaining of course that you have a screw sticking out of your foot!

    Good luck, keep me posted!

    karen x
  • VILAVILA Posts: 29Member
    I am hoping so much that yo get in very soon, i will come and see you i promise.

    I think if your GP is not happy then she needs to write to the Consultant and put her view across, you could take it further of course - straight to the Chief Exec, especially as this has happened before he/she would be very interested and would bend over backwards to get you in.

    If i can help, let me know

    karen xxx
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • GuestGuest Posts: 1,968Member

    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.
  • VILAVILA Posts: 29Member
    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
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • VILAVILA Posts: 29Member
    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
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • VILAVILA Posts: 29Member
    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
  • pantherpanther Posts: 251Member 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
  • VILAVILA Posts: 29Member
    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
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • VILAVILA Posts: 29Member
    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
  • pantherpanther Posts: 251Member 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
  • bloggergirlbloggergirl Posts: 6Member
    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
  • VILAVILA Posts: 29Member
    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
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • VILAVILA Posts: 29Member
    [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
  • pantherpanther Posts: 251Member 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

  • pantherpanther Posts: 251Member 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
  • VILAVILA Posts: 29Member
    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

  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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


  • pantherpanther Posts: 251Member 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
  • VILAVILA Posts: 29Member
    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

  • VILAVILA Posts: 29Member
    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
  • pantherpanther Posts: 251Member 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
  • VILAVILA Posts: 29Member
    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




  • pantherpanther Posts: 251Member 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
  • VILAVILA Posts: 29Member
    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
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • VILAVILA Posts: 29Member
    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
  • VILAVILA Posts: 29Member
    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
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • HymerkarHymerkar Posts: 63Member Connected
    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

  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • bloggergirlbloggergirl Posts: 6Member
    Think I would be asking for a second opinion first .
    Louise
  • pantherpanther Posts: 251Member 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
  • HymerkarHymerkar Posts: 63Member Connected
    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
  • akkanaedaakkanaeda Posts: 4Member
    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.
  • pantherpanther Posts: 251Member 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!!!
  • pantherpanther Posts: 251Member 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
  • HymerkarHymerkar Posts: 63Member Connected

    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?
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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
  • pantherpanther Posts: 251Member 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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