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Bunion Surgery And Cp

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  • panther
    panther Community member Posts: 251 Courageous
    Hi Karen

    Doesn't sound like your bunion reliever is much help then! I suppose the thing is everyone with cp is different so although I've had problems you could go and have your bunion operated on and have no problems. I guess it comes down to how long you want to live with the pain.

    I'm not sure about Friday part of me thinks he may agree with me and do more surgery on one of my toes although I don't know what. And another part of me wouldn't be surprised if I get discharged. Oh well I find out on Friday.

    Take care will post again soon or after Friday when I may or may not have more news!!

    Helen
  • panther
    panther Community member Posts: 251 Courageous
    Hi
    Well I did the appointment on Friday saw a completely different registrar who I've never seen before. At first he didn't know why I was there because my file is in such a mess he had read a letter from 1998 and thought I was there for advice on whether to operate on my achillies tendons.

    Once we finally both understood why I was there and I was back from x ray all he has basically told me is to wait and see. On my left foot I have 1 toe where the soft tissue hasn't fused together as well as they would like, but he said it's not worth worrying about.
    On my right foot where my toe is being pushed under he is saying wait and see what happens we could operate on it but we'll wait until it is causing you pain first as you've already gone through a lot of surgery.

    He says the pain I'm getting is probably from scar tissue and not from all the pins in my feet this may settle or it may not have got to give it time.
    As the physio had asked me to ask if they would consider doing achillies tendon lengthing surgery I asked, his response was tell the physio I say a very bad rude word in response to that. He said they used to like doing this type of surgery on people with cp but not don't like to do it very much as it makes you walk and stand with a bent kneed gait which put strain on other areas.

    Basically he has told me although my surgery was done in December it is still early days go away enjoy life and start getting used to your new feet and not expecting everything so quickly.
    I have to go back in 3 months time.
  • speedyinpain
    speedyinpain Community member Posts: 52 Listener
    Hi Panther,

    I suppose in some ways it was good that the registrar was honest with you about your current situation and that his reaction to the physio's suggestion was clear get knotted but in stronger terms. It shows that in some situations consultants agree with patients when they feel physio's sometimes spout a load of rubbish but may not directly comment. I hope that you will continue to make progress with your recovery and keep pushing for the help and support you require

    Take Care
    Andrew
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous


    Hi Helen

    Well, it might not have been what you wanted to hear, but I think you got a reasonably sensible response from the registrar. I had both my tendons lengthend when I was six for my left leg and 8 for my right foot, and he is right, because I walk with bent knees! At 14 I had my tendons in the groin cut and that as caused endless problems. When I was 35 I went to the hospital to see about getting prescription shoes and the registrar I saw then, which was 11 years ago, told me then that the no longer performed such surgery.

    Anyway, take note of what he told you - its early days yet, take it slowly I am sure you will keep improving.

    Take care

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

    I know the registrar was right about the tendon lengthing as I had both my achillies tendons lengthen when I was 4 and yes I walk and stand with bent knees.
    But I was more concerned about my little toe on my right foot that appears to be being pushed under. He has said they could do surgery on it to correct it but as it's not causing pain would probably leave it a few years, also he felt that I'd been through rather a lot of surgery in the last two years and my feet could probably do with a break.

    I can see what he is saying but I guess I'm thinking if there's possible more surgery to do I'd rather do it now and get it out the way so it's not hanging over me. And also surgery has been hard to recover from this time and I also feel I'd rather do it now the age I am than wait possibly a few years when I'll be older and if am older things could take longer to recover from etc. Hope you can follow my jumbled thoughts there!!

    I know that I'm probably expecting too much to soon but to me from Dec-April seems a long time! I guess just need to be more patient.
    Today has been one of those days I had a bad night last night due to aches and pains cp related this time and they've continued most of the day. So I'm feeling a bit grotty and drugged up. I don't see how the government can say they plan to get people to work I certainly couldn't the way I felt today and with the fatigue issues I get.

    Have a good weekend

    Helen
  • panther
    panther Community member Posts: 251 Courageous
    Hi

    I'm fed up today just as I thought I was starting to mae progress and get back on my feet more and walking more regularly with my sticks the gp has told me to rest!!

    I've been getting pain in my hips since this last lot of surgery in December. The left hip is worse than the right and a friend of mine said they thought it was because when I walk now my left foot goes outwards and then round rather than just straight through. I ignore it for as long as I could but these last few days it has hurt even when I'm sat down so I made a doctors appointment.

    Only to find my old gp has left and I'm starting again with a completely new gp. Basically he has said he doesn't know and it's down to the hospital to address the problem whether that be more physio or whatever. I explained the hospital aren't interested as they just look at the surgery has been a success and I just get coments like go away and get used to and enjoy your new feet. And that it's also not helped that you never see the consultant (who understands cp) it's always a registrar and never the same one twice.

    Gp is saying it could be a number of things but it maybe that the change in my walking is causing inflamation in the ligaments around the hip area which is causing pain in my hip. He has told me to mention it next month at my next outpatient appointment. He said if they don't act on it then or take me seriously then he will write reffering me back to the hospital as he says this is really their responsiblity as it's an after affect of the surgery.
    In the mean time he has told me to take voltrol which makes me even more tired and rest. I'd had enough of taking it easy and resting and now I'm doing more of it!!

    Helen
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous

    Oh Helen, you poor thing you must be really frustrated.

    Your new GP has come at a difficult time, but lets hope he takes more interest - give him chance. I know it means that you got to sit this out until your next out patiient appointment, but it sounds like your hip is too painful to do much else anyway.

    Keep ur chin up. I usually let my body be my boss. If I am aching, tired or in pain the only thing to do is rest. Maybe give it a few days and then try it, if its ok, carry on and try a bit more, but if not, then stop again. I think sometimes we know better than the docs - at the end of the day we got it 24/7 not for a 20 min appt once a month like they are seeing.

    Best of luck

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

    Thanks for that I know you're right think I just needed a moan yesterday as I was so frustrated with everything it feels like I do 3 steps forward and 2 steps back!!
    And I've never been one that takes being told to slow down or rest easily lol!!
    I went to the library yesterdy and stocked up on books now I guess I've got the perfect excuse to sit or lay about reading!!!
    How are things with you are they getting any better or easier?
    Take care and have a good weekend

    Helen
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous

    Hi Helen, I know exactly what you mean, it is very very frustrating, especially as the people around you - no matter how sympathetic they are - dont fully understand what you are going through - THAT IS WHERE YOUR FRIENDS HERE COME INTO IT. It certainly helped me through my difficult spot.

    I hope that by now you have had a few days rest and are feeling the benefit of it.

    I am well on the mend now, thanks for asking. I have just got home from 3 days at the mobility road show. What a fantastic time I had. I even climbed the rock wall and rang the bell!! Brilliant.

    Now I am on the mend, and getting better each day, I constantly worry about taking those two steps back, but hopefully I wont have to. I am determined now, to get stronger and stronger and not let my back get weak again.

    As for my bunions, they are still painful, but when they are at their worst I just try a change of shoes and if that dont work, I rest until they calm down. I will put up with them a little longer, after all you have been through.

    Now that I am more mobile my muscles are more relaxed, I think that is possibly due to the fact that I am a lot happier in myself.

    My next step is Megan Baker House, I have completed my assesment form, just waiting for an appointment now. I will keep you informed.

    So, keep plodding on, and keep your chin up.

    Best Wishes

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

    Just an update. I went back to the hospital on Friday for a follow up appointment for the surgery I had in December.
    I have now been discharged form the foot and ankle clinic as they are happy with how things have gone. That was the good news.

    The bad news is that I now have very bad hip pain I think this is because now my walking has changed I'm rolling my foot outwards when I walk which I think is putting a strain on my hip.
    My hip is now constantly painful and often feels like it is stuck when that happens it feels like you're crunching a car through it's gears then suddenly you feel and sometimes hear a kerclonk type feeling as something goes back in place. Until it goes back in place it is really painful and I'm unable to straighten my leg. Has anyone else had this sort of problem and what did you do to help or correct it?

    The consultant on Friday said I now have to go back to my gp and be reffered back to the hospital to see a hip person as you can't ignore hip pain in some one with cp. So it looks like I'm back on the hospital merry go round.

    Does anyone from Bucks know of any hip consultants at the Nuffield hospital in Oxford or any of the other local hospitals? I'm thinking of being reffered back to Oxford as they may understand the cp complications better. What do others think do you have any advice?

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

    Well I went back to Oxford on Tuesday to see the hip consultant. He couldn't get his head around the idea that I said at times it felt like something had got stuck and then there be a clonk like noise or feeling as it went back in place then I didn't have pain for a little while or I could then straighten my leg.

    He x rayed my hips and said for someone with cp my hips are in very good condition which is unusual. I assume that means that people with cp can get problems with their hips. As it's not something I've expierenced until recently I don't know.

    He thinks the pain I am getting is due to inadequate physio after my surgery and that it is the muscles around my hips not liking how my walking is now flat footed rather than toe walking. He said this is something the physio should of picked up on when they got me walking again after surgery. He said they should of realised that they needed to do hip stretches.

    I told him the physio didn't get me up walking that I got myself walking and that the physio never watched me walk once. That they had been more concerned about how tight my achiliies tendons were than anything else and when they failed to loosen them said they didn't know what to do and discharged me.

    The consultant made no coment to this he has refered me back to the physio department for more physio on my hips and stretches of my hip muscles but said even after physio it could be a few months before I see any improvement. If after a few months I don't think things have got any better then I have to contact him and he will arrange an appointment to scan my hips to see if the x ray missed anything, but I got the impression that he doesn't think that will really be necassary.

    When is someone actually going to start to show an interest in adults with cp so that when we go to hospital for treatments or surgery we get the right support so we don't have to keep going backwards and forwards with problems while the health professionals sit there saying we don't know what to do with you you're an adult with cp and we don't know what to do with adults with cp especially ones that are still walking.
    Instead of the amount of time they spend keep saying this shouldn't they actually be spending some time finding out what they should do or can do so we don't keep feeling like second class citizens that don't get the support we need.
    Just how loud do we have to start shouting before someone listens adults with cp need more support, input and research so we'ew not just put on the scrap heap because no one knows what to do or cares.

    Helen
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous

    Hi Helen, we havent heard from you on here for ages, I was wondering what was happening! Its so frustrating isnt it? I had exactly the same response from the physio when I was referred with my back pain. If it was left to them I doubt if I would ever have walked again. Thankfully, due to my own determination I am back on my feet and walking unaided, slowly but surely I am getting back to where I was before my back trouble.

    The only people who have taken me seriously are Megan Baker House, I have now had my report and am looking forward to attending for a block placement next spring. I will keep you posted.

    In the meantime, we need to keep pushing, but I am not sure where!! to get recognition that children with CP grow up to be adults and surprise surprise the CP dosent go away - hence there are thousands of adults who need some help and advice.

    Best Wishes Helen, hope you get sorted soon.

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

    I just got a bit fed up with it all so didn't come on here for awhile it no longer seems that there's much support here from Scope anymore we keep on about wanting more support for adults but we don't seem to get it from here or anywhere.

    Glad you seem to be getting somewhere with Megan Baker House. I will see what happens when I go back to physio. But I was talking to someone the other day and her 5 year old who has cp has had his physio stopped the hospital have said they will only see him once a year and they can't predict the future because the science isn't available to know what the future holds.
    They've told my friend if he is not fully mobile by 5 he never will be. I think he is mobile just not all the time as he gets tired quickly but they've still had everything removed.

    It just feels like people with cp have been forgetten by everyone. You keep seeing mental health charities commenting on the new ESA rules for example and raising their concerns. I haven't heard Scope voicing their concerns very much surely this would of been an ideal time to bring more light on ageing and cp after all it's adults with cp that could be forced back into work and be worse off both finacially and healthwise but where's the concern and support been.

    Also I read somewhere the other day that under the new blue badge rules people with mental health problems will be able to apply for a blue badge. WHY?

    I will end my rant otherwise I could go on all day the mood I have been in lately.!!
    Take care

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

    I haven't had to update this post for awhile but thought it was time I did. I'm still not getting very far with my recovery from the last lot of surgery. The physios at the hospital weren't too sure what to try as I'm now getting a lot of hip pain especially in the left hhip.

    They tried physio and hydro but neither really helped. I've now moved my physio to a more local hospital and am now seeing a neuro physio. Both the physio and the gp have requested a gait analysis to see what is happening.

    I've also tried out a rollator but because my hips move when I walk the rollator just moved from side to side all the time and didn't feel safe. Now if I walk with my sticks I get alot of pain by just walking 2 houses away I'm in lots of pain. If I walk pushing my wheelchair I don't get pain.

    Yesterday I had to go back to the hospital to see a different consultant to see if a gait analysis is suitable. They now want to do an MRI scan they want to inject dye into my hip and do this scan. The x ray didn't show anything but the mri scan will let them see what is going on inside my hip. To see if I need a hip replacement or if there is arthritis in my hip.
    If the scan doesn't show anything then they will look at doing a gait analysis.

    So it looks like I'm back on the possible surgery roundabout again I just feel really fed up with it all at the moment it feels like I'm falling apart!! It feels like they do one thing and then that has a knock on affect somewhere else but until they do whatever they don't know.
    One physio has said to me things may be as good they're going to get which doesn't make you feel any better.

    Sorry to moan guys just feeling a bit down about it all at the moment. Has anyone else any experience of hip replacements or arthritis and cp?

    Helen
  • speedyinpain
    speedyinpain Community member Posts: 52 Listener
    Hi Panther,

    I am sorry to hear that things are not going too well for you at present, I hope things will improve soon, hey don't feel bad about moaning its a good way of releasing tension and we all do it sometimes.

    Take Care
    Andrew
  • panther
    panther Community member Posts: 251 Courageous
    Hi Andrew

    I know it's sometimes good to moan lol!! But I'm starting to get really fed up with it all it seems that what started off as bunion surgery has been full of complications or knock on effects.
    I keep trying to tell myself that things went better than they could of done because at the start of the bunion surgery the consultant told me there was a 50% chance I wouldn't be walking afterwards at all. So I keep trying to tell myself I'm doing better than I could of been by being able to walk a bit.
    But there are days when it all just gets to me and I feel really old and fed up with pain etc. I said to a friend at the weekend some days I feel more like an old lady than someone in their 30s.

    My worry now is what knock on effects could the hip pain end up having especially if they do say I need a hip replacement.

    Take care

    Helen
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous
    Hi Helen, sorry to hear you are still having trouble. This is exactly what worries me, you have surgery to correct one problem and it has a knock on effect. Its the reason, the that so far I have refused any surgery offered

    Thankfully my back problem is all over and done with, I still have slight nerve damage in my left leg but I am back up and walking again.

    Unfortunately I missed out on the adult block placement at Megan Baker House because the week prior to the course I had to go to Bangor Hospital to see the opthalmology department as my optician had spotted that one of my optical nerves was being squashed. He did not know why but thought it should be checked out. To cut a long story short, my appt for the hospital arrived and I went along there fully expecting to be told that there was nothing wrong - but instead, I was admitted as a medical emergency. They did a CT scan and MRI scan of my brain and then a Lumbar Puncture which showed that I have a Begnin Intercranial Hypertention, basically the fluid pressure in my brain was too high. They have drained some fluid off my brain and I am now on medication. So, back to being tired, headaches etc and not very mobile because of it all. The medication is awful and I hope I wont have to take it for long. I have got a follow up appt on 9th April.

    The consultant told me that this happens to women who are in their 30s and 40s, overweight and who spend a lot of time sitting. I cant win.

    So I am now on a strict diet, I would like to loose 3st, but 2 would be enough, Im not very overweight, but with not being able to get around because of my back, I have put a couple of stone on. I have lost a stone and that has helped with my mobility, more than I could have hoped for to be honest, and I am trying to walk more, even if only around the house. So it is encouraged me to loose more weight.

    With regard to the walking, when my back was bad, I bought a 4 wheel rollator with brakes. It has been the best move I have ever made, because without it I would not have got back on my feet. I know what you mean about it moving from side to side, I felt funny at first but I use the breaks a lot, to stop it moving side to side too much, and cant walk very fast, but now I am used to it, its fantastic. I carry the laundry, do my housework, I have a little tray to put on the seat (only a cheap tray from
  • panther
    panther Community member Posts: 251 Courageous
    Hi Karen

    Sorry to hear you've been having problems sounds like you've been going through a lot. I walk indoors and I also now the weather is improving have started walking to the shops pushing my chair so I can walk down and wheel back.

    I've now got a date for my MRI scan on the 16th April. Although I saw the physio last week and she thinks the MRI may come back clear because she said the groin, hip and lower back are so interlinked it could be reffered pain from somewhere else which could be coming out in my hip so will have to wait and see I wouldn't be surprised if that's what it turns out to be.

    You're right it is hard some days but we do have to keep moving etc just means we spend more time being really tired lol!! Wouldn't mind if that meant I'd sleep every night but it doesn't seem to work like that!!

    Do you know yet when you'll get to do another block at Megan Baker House or are you going to wait for a bit?

    Take care try and keep smiling and moving and good luck with the diet.

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

    Just a quick update those of you who have been following this post will know I had an MRI scan on the 16th April on my hip. Last week I rang the secretary to find out when I'd get the results as no follow up appointment had been made.
    She told me if the scan was clear they don't see me they just discharge me. She then typed my hospital number into computer and said Oh we need to see you I'll get you an appointment out in the post!!!

    Hadn't heard anything so thought as I had some spare time this morning I'd ring outpatients after being passed to many different people was finally given an appointment with one of the registrars for the 30th June!! And was told this was the earliest appointment available Was told if I wanted to see the consultant it would be at least another 2 or 3 months wait.

    I then had to ring back this afternoon as the 30th June was a problem for the friends that normally take me to appointments and the appointments person said before we change your appointment speak to our transport people because you are a wheelchair user we can offer you transport.

    So spoke to transport and she said well how do you normally get here can you get in and out of a car? I said yes and she said wel then you need to speak to your gp and get him to write to your PCT to see if they will agree that you need transport before we will agree to do it.

    I told her that appointments had told me that transport was available if you were a wheelchair user and couldn't drive. She said yes but the rules changed in April and you can get in and out of a car!!!

    By which point I was so frustrated I could of cried I've now rung appointments and changed the appointment and have now got an appointment on the 9th June!!!
    It just seems more and more now we are being made to jump through hoops to get the simpliest of things when I know people with other health problems like mental health who are just handed all sorts of help and support.

    Sorry will stop ranting now lol
    Helen
  • Belle
    Belle Community member Posts: 5 Courageous
    Hi Helen

    I think you are entitled to rant all you want. For one thing if you hadn't rung to and checked the situation they might not have acknowledged that you needed a follow up appt. you might never have been contacted. As for the transport issues it seems to me yet again that if you try to help yourself and be independent it just becomes more difficult when you do need help. Ridiculous.
    Anyway keep smiling and lets hope the outcome of all this treatment is good and worth the hassle,
    Cheers
    belle

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