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Bunion Surgery And Cp

Guest
Guest Member Posts: 1,968
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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Comments

  • panther
    panther Member Posts: 251 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
  • panther
    panther Member Posts: 251 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




  • panther
    panther Member Posts: 251 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
  • Guest
    Guest Member Posts: 1,968
    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
  • bloggergirl
    bloggergirl Member Posts: 6
    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
  • panther
    panther Member Posts: 251 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
  • panther
    panther Member Posts: 251 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
  • scott
    scott Member Posts: 3
    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?
  • panther
    panther Member Posts: 251 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
  • panther
    panther Member Posts: 251 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
  • panther
    panther Member Posts: 251 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
  • panther
    panther Member Posts: 251 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
  • Guest
    Guest Member Posts: 1,968
    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
  • panther
    panther Member Posts: 251 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
  • panther
    panther Member Posts: 251 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
  • panther
    panther Member Posts: 251 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
  • panther
    panther Member Posts: 251 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
  • panther
    panther Member Posts: 251 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
  • VILA
    VILA Member Posts: 29
    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

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