Cerebral Palsy
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Bunion Surgery And Cp

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  • pantherpanther Member Posts: 251 Courageous
    Well it has now been a week since my surgery and what can I say I'm shattered. I was saying to a friend the other day I wonder when the consultant said I could weight bear to transfer if he realised just how many times I would be transfering seeing as social services didn't put in any help. I said it's a bit like someone asking you how many times you go up and down the stairs. You think you don't do it often until you start counting.

    I've got district nurses coming in twice a week to change dressings but so far all they've done is moan that it's a wasted visit as they don't see why they are doing it every supposedly 3 days. They all keep telling me that usually dressings are left for 2 weeks until stitiches come out. Considering I was sent home in the dressings that were put on straight after surgery I'm glad they are being changed. Shouldn't infection control come into play somewhere here rather than district nurses telling me there is no point?
    The consultant has also requested that soft dressings are used after the stitches are removed to prevent the surgical shoes from rubbing even though I'm not walking yet. The district nurse today said what's he on about usually once the stiches are out that's us finished we don't put any extra dressings on. If he wanted that he should of specified what exactly he wanted. I think he just said the first thing that came into his head!!

    The gp has stopped some of my tablets as she was not happy to hear I'd been put on a 6 week course of aspirin. She said there's no need as long as you do your exercises. Sorry what exercises I was only given one to do that would keep my hamstrings loose I wasn't given any guidance on exercises to do to prevent dvt.

    Also the hospital were unable to advise me when I could go back on my contraceptive pill they looked at me blankly and said they had no idea even the pharmacist didn't know. Can't believe I'm the first woman to of asked that question or is it because I was in my wheelchair they didn't want to consider the possibility that I could have a sex life?

    I must say so far all of this is making me wonder just how much physio I will get when I go back. If last time what should of been 6 weeks ended up being 1 hour. As the physio told me the consultant may ask for 6 weeks but we will decide when we do our assessments what we feel you need.
    What happend to what the consultant asked for the consultant got? And also nurses/district nurses actually doing their job even if it is only changing dressings since when did just changing dressings become a waste of time? The district nurse said it was because my stitches aren't bleeding any more but they are there was blood on the padded dressing she removed under the bandages.

    Oh well will keep you posted of what delights happen next week.
  • BelleBelle Member Posts: 5 Connected

    Hello and welcome home

    perhaps its them that don't have a sex life.

    I have always had a big issue with hospital and comunity care staff who grumble to patients about their lot. its bad enough having to be in need of their attentiion without being made to feel guilty about being a waste of time or whatever - they choose to moan about.

    Anyway hope things improve and that Christmas is merry and 2008 is kinder to you.
    Cheers
    belle
  • pantherpanther Member Posts: 251 Courageous
    Hi Belle

    Well I've got up this morning and I've got one bandage nearly falling off I haven't bothered to ring the nurses back to come and re do it I've asked my friend to call in and re do it for me at least then I know it will be done properly!!

    As you said let's hope 2008 is better and kinder to all of us have a happy christmas.

    Helen
  • HymerkarHymerkar Member Posts: 63 Connected
    Hi Helen,

    Glad to hear you are home, and the surgery is well behind you. Lets hope the recovery is speedy and its all a success.

    I am still suffering with the trapped nerve, my community physio has stopped coming while I am attending the hydro pool each week. The Physio in the hydro has told me it can take 8 to 9 months for this to be back to normal, and he then added 'if ever'!

    However, on the bright side, I am up and walking again, but only with the walker and not for very long, but at least I can get around the house now.

    Keep us all informed with your progress, have a great Christmas and Happy New Year when it arrives.

    Bye for now

    Karen
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen

    Hope you had a good Christmas and happy new year to you. There's not much to say about my recovery at the moment other than it's long, boring and frustrating.

    I've got probably another 4 or 6 weeks before I can try to walk again it depends what date I get for my first outpatient appointment. Some days I feel like I could walk and all those days I have to remind myself that I'm not allowed to yet. But then there are other days when it will feel really painful when I put any weight through my feet while I'm transferring etc.

    I'll get there in the end and I guess when I do my out patient appointment that will be when the hard work and physio starts etc.

    Take care talk to you again soon

    Helen
  • sammystarsammystar Member Posts: 3
    [quote name='panther' date='Jan 2 2008, 09:14 PM' post='15208']
    Hi Karen

    Hope you had a good Christmas and happy new year to you. There's not much to say about my recovery at the moment other than it's long, boring and frustrating.

    I've got probably another 4 or 6 weeks before I can try to walk again it depends what date I get for my first outpatient appointment. Some days I feel like I could walk and all those days I have to remind myself that I'm not allowed to yet. But then there are other days when it will feel really painful when I put any weight through my feet while I'm transferring etc.

    I'll get there in the end and I guess when I do my out patient appointment that will be when the hard work and physio starts etc.

    Take care talk to you again soon

    Helen
    [/quote]
    Hi Helen.

    Happy new year to you. I hope it's a better one for you.

    I hope your recovery goes well.
  • stewarttatestewarttate Member Posts: 3 Listener
    Helen

    I'll pray for you. I hope you are doing better and soon you will be back on your feet pain free.
    In early Nov 2007, I had surgery on my left foot attempting to relieve pain while walking.

    Two toes were broken and re-aligned.
    In the big toe, the doctor placed screws. In the toe next to the big toe, the #2 toe, I guess; the doctor placed a six inch pin that was later removed in early Dec 2007.

    After reading your blog, part of me wishes I'd found your words of experience a few months sooner
    and part of me is glad I didn't. I had everyone of your fears and no answers.

    I was told by the doctor that my recovery would take six weeks.
    I repeatedly questioned this statement and stressed my concerns given my CP.
    At first, I believe the doctor didn't believe the CP would cause a major recovery issue.
    Now, I'm sure he understands the impact and this hopefully will help the next person with CP and this problem.

    Nine weeks has now passed and I'm only able to walk a few steps with pain.
    At the moment, swelling in my left foot (after a few steps) is the biggest problem.
    I've read a few websites that state "the swelling can take six months to go away" -
    http://orthoinfo.aaos.org/topic.cfm?topic=A00140

    Did your swelling go away?
    If yes, how long did it take?

    As you pointed out, as the nerves grow back; the pain also returns.
    I would say the pain is less then before surgery (right now) but still more then I expected.

    I've been very careful to step slowly using a heal to toe motion. Not, toe first - toe in (my normal gait).
    Of course, I'm using a walker or holding onto something around the house.
    I've been mainly using a chair to get around, which I don't like.

    So far, I've received two main statements from my doctor -
    1) when the swelling goes down, the pain should reduce allowing you to walk more.
    2) when we re-aligned the two toes, this places the toes into a correct position that is new for your foot. Many nerve endings are now receiving walking presure that did not received presure in the past. This will causes pain when you first begin walking on your newly aligned toes. In most cases, the nerves claim down after walking a few weeks. Sometimes, the nerves do not adjust to the changes. When the nerves do not adjust, they can be removed.

    Has your doctor said anything to you about this?

    After reading this blog and others, it apppears that toe alignment problems is a common, serious issue for people with CP. As we age, the problem appears to reach a point where the misalignment must be corrected if walking is to continue without pain.

    What concerns me most, is the doctors in the USA & UK don't seem to have any case studies to guide them.
    This is very serious given how common this problem appears to be in person with CP.

    I know that I toe in when I walk. This is the gait that many people with CP live with.
    I'm not a doctor but it seems logical this gait over many years of walking would cause toe alignment issues.

    In people without CP, toe misalignment is caused by poor shoe selection not gait!
    As a male :-), I've never selected shoes that would cause this issue. It was caused by my gait!
    I've talked to my doctor about this and he agrees although no studies have been done in the USA (I've asked!).

    In his large practice, my doctor is booked solid with woman (over 90%) that love poorly fitting shoes.

    Given my slow recovery, my doctor has asked me to take it very slowly not wanting to much toe-in presure put on my newly aligned toes before they have a chance to heal totally.

    I fear my CP induced "toe-in" gait is a great way to cause problems with toe screws.
    Perhaps, a safer surgery method is needed for persons with CP?
    I've resently read about different misalignment procedures that can be used that avoid screws or pins such as Exostectomy or Resection Arthroplasty. While screws and pins maybe better for most people,
    someone with CP may do better using other methods. Where are the studies?

    My plan at the moment is to slowly increase walking using a walker in the house.
    I expect pain when walking given the statements from the doctor about nerves.
    Hopefully, the pain will decrease as I walk alttle more each day.
    Has your doctor said anything to you about this?

    Takecare,
    Stewart
  • pantherpanther Member Posts: 251 Courageous
    Hi Stewart

    You raise a number of things in your email the question is where to start. Yes first time round when they just operated on my left foot yes the swelling went away but I'm not sure that I could tell you how long it took probably a couple of months. I think at the time swelling was the least of my concerns as I was to concerned about moving screws etc. I think if I remember rightly I was back in normal shoes in about 12 weeks certainly by my second outpatient appointment.

    At the moment the right foot is still slightly swollen and I can still see some bruising but it has only been just over 3 weeks 4 this Thursday.
    Going back the consultant has always been honest with me he told me that if I didn't have the bunion surgery done I'd end up in a wheelchair full time because I couldn't put shoes on. That seemed a silly reason to me to become a full time wheelchair user. But the consultant was also very clear on the fact that he didn't know what complications the cp may cause and believe me I threw every possible thing at him!

    Medically so far as I know all 3 lots of surgery have gone as they wanted them to go. Always the unknown in the equation has been how the cp would react to the surgery that was done. I guess they just don't know what to expect with someone with cp when they do surgery. My expierence so far have taught me that they don't seem to be able to cope with an adult with cp that is still walking. As they seem to expect by the time you reach your early 20s you should be in a wheelchair full time.
    I think the other problem is very few physio actually work with adults with cp many of them have said to me we work with you up to 16 or 18 then you are on your own. Because they don't work with us during adulthood they really are stumped as to what to do with us.

    So far I've had to fight to get physio input after each one of my surgeries and the level and understanding of physio received has been useless. I was given no physio first time round and 1 hour second time round who knows what I will get third time round!!

    Until adults with cp are actually recognised as having needs and not just pushed to the background I don't think medical professionals are really going to understand the issues. And the other probelm is that everyone with cp is different so we'd probably react in different ways.

    Will keep you posted on how things are going and what they say long term. You sound like you are doing well hang on in there.

    Helen
  • stewarttatestewarttate Member Posts: 3 Listener
    Helen

    Thank you for the reply.
    I agree with your comments, I've had to insist to get the GP to send me to PT.
    Like many of us, I've worked hard to keep walking.

    It hasn't been easy - my back, hips and knees now give me a fair amount of pain by the end of the day (that I just deal with). Of course, some days are better then others.

    Right now, I'm hoping the swelling goes down and I can walk more then a few steps without pain.

    I've been searching for studies on this topic.
    My doctor is a good guy. I know he would review anything I find.
    In the latest Lovell and Winter's Pediatric Orthopaedics, it talks about the best methods of correction based on the type of CP and amount of spasticity. Two paragraphs on the topic, amazing. I guess it's better then zero. As you pointed out, I found no information covering adults.

    I was also very concerned about pins and screws not holding up.
    The doctor and I talked about this prior to surgery. Sometimes, I have uncontrolled movement.
    He put me on Flexeril to help control muscle spasms right after surgery to four weeks.
    This REALLY helped but makes you very tired.

    Takecare,
    Stewart

  • pantherpanther Member Posts: 251 Courageous
    Hi Everyone

    Well I'm 4 weeks into my recovery now and all I can say is I am exhausted I'm so tired there are days that I just don't know what to do with myself.

    Things are not going too good either I rang the gp yesterday as I was concerned that my right foot was still so swollen. I also mentioned if she was coming out could I have a repeat prescription of my contraceptive pill. Her response was have you gone back on it? I said you know I've gone back on it I spoke to you 3 weeks ago and asked your advice as the hospital had not been able to advise me when I asked them before I left hospital when I could go back on it.
    She said oh it's just that 2 weeks ago I got confirmation from the hospital and they have made it very clear that you are not to go back onto your contraceptive pill until you have been up and walking for at least 2 weeks, and as he doesn't want you walking until after your first outpatient appointment you will have to come back off it and wait. Interesting how nobody either the hospital or the gp thought to pass this information on to me 2 weeks ago. But then maybe that's because I'm only the patient and not that important?

    Anyway the gp came out today to look at my foot and she thinks I may have a skin infection she also wants to rule out a bone infection but wants the hospital to bring my outpatient appointment forward rather than have me go backwards and forwards between hospitals for x rays.

    Tried to ring the consultants secretary today as he normally does a clinic on Fridays so I thought she would be there, But she wasn't there and her voicemail box was full so was unable to leave a message. Will have to try on Monday.
    So now on top of all the painkillers I also have antibiotics to take as well.

    Helen

  • BelleBelle Member Posts: 5 Connected
    Hi Helen
    Glad to hear that the threat of infection is passed - that sounded potentially quite a problem,also that you are slowly getting mobile again.

    nothing to report from here except yet another fitting for new boots and another few physio sessions booked.
    i must say they're taking endless trouble over the boots and they almost look fashionable!

    All the best

    belle
  • pantherpanther Member Posts: 251 Courageous
    Hi Belle

    Glad things going ok for you. Have just heard this afternoon that I've got a physio appointment on the 4th Feb this is about an hour assessment so they can then decide if they want to five me any further sessions to help me get more mobile after my surgery.
    Am not expecting much though as am managing better than I thought I would be. I can carry a cup of tea across the room so don't expect they will think I need much input.

    Take care

    Helen
  • sammystarsammystar Member Posts: 3

    Hi Helen,

    Hope you are ok.

    Just wanted to wish you well. Hang on in there!


    Sam
  • pantherpanther Member Posts: 251 Courageous
    Hi Sam

    Thanks for that it's nice to know people are thinking of me and care. I'm doing ok went to hospital on Friday luckily no infection it's all starting to heal as they want it I'm not fully healed yet but they have said I can start to do some gentle walking.

    So am slowly getting back on my feet am doing better than I thought I would be after 5 weeks of no walking. So don't think when they finally sort out physio the physio will do very much. The only problems are that my right foot is still very swollen but the consultant said that's to be expected with the amount of surgery they did on that foot and also my achillies tendons have gone really tight due to not walking for so long. The gp wants me to try baclofen again I had it before about 7 or 8 years ago and couldn't get on with it as it relaxed my muscles too much and I couldn't stand. But the gp is still saying try it again. I'm very reluctant to but I guess I'm going to have to as she has given me a prescription. She's suggesting I take it short term to see if it just gets me through this bit where everything is so tight.

    Hope all is well with you take care

    Helen
  • HymerkarHymerkar Member Posts: 63 Connected


    Hi Helen, Glad to hear things are going in the right direction at last. Not much to report from me, other than that I seem to be improving, at a very slow rate! Its frustration and is made worse by the physios thinking that I am doing well. The seem to think I should have given up by now and im expecting too much. My tendons are also very tight through lack of use and i have been given stretching excersises which is painful, I cant do it on my own, so I have to rely on my partner being around 3 times aday. I am on Baclofen. I was a bit concerned when my GP gave it to me, but between us I agreed to take one 10mg in morn and another at tea time and increase it slowly. The recomended dose was 60mg a day but the gp and physio didnt want me to go that far in case I went too weak. The 10mg am and pm has definately helped and so i havent increased it. I have been on it for about 8 weeks now and its helping. So give it a go in small doses???

    All the very best Karen
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen

    I've tried the baclofen but couldn't get on with it the gp has stopped it today. I lasted 4 days today would of been the 5th.
    I was taking 5mg three times a day so 15mg but it was making really fuzzy headed, tired, causing more pain in other places other than my achillies tendons and I also felt like I was living in my own little world and found it really hard to concentrate.

    I cried so much over the weekend because I was in so much pain and so down with it all.
    Glad baclofen seems to be working for you though. I've decided to try a herbal supplement now and see if that works. If not I will go back to the tried and tested grit my teeth and grin and bear it method!!

    Take care

    Helen
  • HymerkarHymerkar Member Posts: 63 Connected


    Hi Helen,

    You poor thing, I can really sympathise. I know how hard its been for me with this tapped nerve, you just dont know what to do with yourself and cant see an end to it all. I can honestly say that I have NEVER had pain like I have had with this. I too was in tears. I couldnt even get myself to the toilet, it was awful.

    Sorry the Baclofen havent worked out for you. They make me light headed for about an hour and i am tired all the time, but at least they have stoped the spasms which was making it all worse.

    How are you feeling today? Have you got some strong pain killers? I am also on CoCodamol 30/500mg which I can have up to 8 in a day but I have managed to reduce that to one in morning one before bed and usually one at about 5am. Night time is worse for me at the moment because I just cant get comfy in bed, my hip is very painful. It just seems like when I get on top of one problem that causes another. I am really fed up of it all.

    Its good to know there is someone out there who understands what I am going through. Hope its helping you too.

    Well, I hope that you are feeling better. Keep in touch, and take care.

    Karen
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen

    I am feeling better today having stopped the baclofen I'm now trying a herbal supplement called Tang Kuei and Chamomile. I got it from a friend of mine who sells the herbalife products. Although it's early days it does seem to be helping.

    I start to get spasms going up the lower front of my leg the baclofen started these spasms off but taking these supplements does at the moment appear to stop them. And the achillies tendons don't seem as tight. They are definately not painfully tight which is what they were and why the gp put me on to the baclofen in the first place.

    Will keep you posted on how things go. I'm always here to chat just glad my rambalings are helping someone else and it's good to talk and know you're not going through all this on your own.

    Hang on in there take care

    Helen
  • pantherpanther Member Posts: 251 Courageous
    Well what can I say about today's physio appointment apart from I'm more confused than ever and in more pain.

    It started and I really got the impression that she was just going to say oh but you're walking so we'll leave you to get on with it. Then my friend mentioned that since I've started walking again I'm throwing my left leg out to the side, and I made clear that during the 5 weeks of not walking I didn't walk at all she said oh I'd better have a look at you then.

    She has then proceeded to give me exercises that I can't do easily she has said I've got to start moving my feet to the sides both inwards and outwards can't really remember why now. My feet don't/can't do that on their own they need help. When I use my hand to do it she complained that my hand was doing more of the work than my foot.

    She's also shown me an exercise to do on a gym ball, I don't own a gym ball and haven't got the space for one but she's still suggesting I buy one. She's suggested I go swimming and walk in the water. At the moment I'd need help walking on the wet poolside etc I have no one that can go with me so can't do that either even though she wants me to report back to her in a fortnight how I got on.

    I was also told if my foot is swollen I should rest it as much as possible and put ice on it and elevate it otherwise if I continue to walk on it with all the metal in my foot I could cause infection. She said but you know that when I said no I didn't no one has told me that her reply was oh they should of done.
    Why am I confused because half the exercises I can't do and she said let your foot be the guide if it's swollen and warm don't walk very much but don't stop walking!! But it's warm and swollen all the time at the moment!!
    I go back in 2 weeks time so will see what happens then.

    Take care

    Helen


  • pantherpanther Member Posts: 251 Courageous
    Hi Karen

    Thanks for the support. The physio was rather baffled I think as she was trying to get me to do some stretches to stretch my achillies tendons but on one leg I could feel they were doing something and on the other I couldn't feel a thing no matter what she did.

    She has now suggested that I try acupuncture as apparently that is really good for relaxing tight muscles. I am a bit aprehensive as I don't like needles but a friend has promised I can hold their hand through the whole thing. So I am booked in for a session next Friday after my outpatient appointment.
    The physio said if the acupuncture doesn't help there's nothing else she can offer other than talking to the consultant again to see if they would do tendon lengthing surgery or if there is something else he can suggest.
    I don't think he will agree to surgery as about 9 or 10 years ago he said no to that type of surgery because I'm an adult. I have been taking a herbal supplement called Tang Kuei and Chamomile which I've found has really helped a lot of time I have either no pain from my achillies tendons or I can just feel that they are not as tight as usual.

    Hope you are well take care

    Helen
  • HymerkarHymerkar Member Posts: 63 Connected
    Good luck with the physio today Helen. Hope you get a bit more support and information. Hopefully by now you will be getting back on your feet under your own steam anyway. Look forward to reading your report. Karen
  • VILAVILA Member Posts: 29
    Hi Helen

    Sorry i not replied sooner but have not been on the site!! had a break from it all for a while - just on here obviously as the day to day CP life never goes away!

    Have you considered Bowen Technique? Liam tried it and it worked wonders for him. If you need to know more there is a thread on here regarding it or try looking up bowen technique. It was fantastic for liam and really helped loosen him - be warned, you will sleep for england afterwards. You may find there is someone local that could do it for you - Liam had his for free as the GP practice felt it was better to fund this than fund Baclofen all the time!!!!!!!!

    regards

    karen x
  • pantherpanther Member Posts: 251 Courageous
    Hi Andrew

    I think you are right physios were more helpful and understanding in the old days. I sometimes wonder if it is because they didn't expect many of us to be walking for long etc. I've often had physios say to me oh but you're an adult with cp and you're still walking I've got no idea what to do with you.

    It seems the whole concept of an adult with cp is something they don't know how to handle. Last year one physio said to me I'll be honest with you you are an adult with cp and no one knows what to do with you as we only work with children with cp up to the age of 16 or 18 if you are lucky. After that I don't know where we think you go I think we're all trained to think you disappear as no one works with adult cp.

    Helen
  • speedyinpainspeedyinpain Member Posts: 52 Listener
    Hi Panther

    Why is it that Physio's are in most cases more of a hinderance than a help? I have found that they don't listen when you are trying to explain something and dont grasp the fact that the exercises they give are hard to do on your own without help?

    I think physio's were more caring and tolerant in the old days compared to now?

    Andrew
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen

    How's things going? I've seen your threads on Bowen technique it's not something I've considered.
    I've started taking these herbal supplements thay are done by Herbalife and are Tang Kuei and Chamomile. A friend of mine became a herbalife distrubutor and that's how I heard about them they are working well my achillies tendons are no longer as tight and painful as they were, some days there is no pain at all.

    It is the physio at Oxford that wants me try acupuncture as she thinks it will help all my muscles where I was unable to walk for 5 weeks after the last lot of surgery. She thinks it may help me to do the exercises she has given me to do.

    I don't like needles and am not looking forward to it but seeing as I was insistent that the hospital put physio in after the surgery I guess I have to try it at least once! Apparently you can sleep a lot after acupuncture to or so the physio warned me!

    The physio has also suggested I ask Mr Cooke (my consultant at Oxford) if he would consider an achillies tendon release again. I know about 10 years ago he was adament he wouldn't do it on an adult as he couldn't guarantee the outcome. But the physio is saying if the acupuncture doesn't work or I don't like it surgery would be the only way to solve the problem. Am not holding my breathe on that one though as don't think he will of changed his mind, and can I face more surgery!!

    As for baclofen I lasted 5 days on it recently then the gp had to take me off it as it was making things worse.

    Take care

    Helen
  • HymerkarHymerkar Member Posts: 63 Connected

    Oh Helen, you seem to be going around in circles and getting nowhere. Sorry to hear that you are still cant see the light at the end of the tunnel.

    The Baclofen seem to be workig for me, I am glad to say, but I have an old school pal I have recently caught up with who is also finding that as she gets older she is getting stiffer and she cant take Baclofen. I will pass on your info about the Herbal remedy and the accupuncture. I have had accupuncture suggested to me, but like you, I have a fear of needles so I have declined. I will be interested to hear how you get on with that.

    I am still visiting the Hydro pool at Bangor hospital, and this week for the first time, I feel like I am getting somewhere. My legs are aching today, but not hurting like they have been. I suppose the aching is just a result of the excersise I did yesterday. I usually come home and fall asleep, but this week I feel fine.

    I have been trying to ring my physio today but without any success, she is much the same as yours, she just dont know what to do with me. The last time I saw her was when she completed the referral to Hydro and she said 'ring me when the hydro is finished'! Since I had the trapped nerve the tendons in my left leg, which has always been my good leg, have gone very tight. The physio gave me stretching excersises to do and told me I had a strained Ham String. I dunno!

    My old school pal lives in Salford, nr Manchester and her physio is brilliant, she is very lucy. I think we need to start a campaign to get physios to recognise that CP sufferers do grow older than teenage and we DO need their help and understanding of our disability.

    Look forward to your update. Good luck on Friday

    Karen
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen

    Will definately update you after the appointment next Friday I see the consultant on the same day as well so it could be an interesting update!

    My friend that sells the Herbalife products is away at the moment but when he is back I will try and put a link to his webpage on here if the moderators allow it then your friend can contact him for some more information.
    As he is able to send orders by post so it doesn't matter where someone lives.

    Glad things sound like they are going a bit better for you at the moment. Take care

    Helen
  • HymerkarHymerkar Member Posts: 63 Connected
    Thanks Helen, I will keep my eyes peeled for the info on your friends web site and pass it on to my pal in Salford.

    Well, after eventually getting hold of my physio, I was told that she had hoped the Hydro would sort me out and that I would be ok by the time they sign me off. I said that although I am feeling much better I am at a loss as to what I should do now. I know from past experience (I am 46 and have had CP all my life when all said and done!), that I must keep moving, I must keep active or I will just stiffen up. I also realise it is important to keep my muscles strong, but I have been told that the only way to release the trapped nerve in the top of my leg, is to relax it. Anyone who knows anything about CP knows that to relax and move in the same sentence is imposible!

    After a few mins on the phone I have convinced her to see me next week, but her final comment was 'I just dont know what to do with you' !!

    I dont know what to do next. If I excersise and try to improve what is now a weak muscle or would I be making the trapped nerve worse? I really dont know.

    I dont want to get my physio into any trouble but I think it is time I put my health first. I will have a chat with the Hydro physio on Tuesday.

    Good luck for Friday with both your appts, sounds like you got a buzy day.

    Karen
  • VILAVILA Member Posts: 29
    Hi Helen.

    Hope all goes well for yu on Friday!

    Look forward to seeing the Herbalife stuff, can you find out if a 13 year old can take it too?!

    ta

    karen x
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen

    Appointments at Oxford are next Friday so will post again then on how things all go.
    Tang kuei and chamomile supplements I don't see why Liam couldn't take it as it's a natural supplement but I will make enquires.
    Don't know if you ever go on the ouch website but I have got a thread on there about it too with more information. You may have to hunt it down as that website gets very busy so threads get moved from the top very quickly lol!!

    Hymerkar take a look at the ouch website for more information on tang kuei.

    Take care

    Helen
  • pantherpanther Member Posts: 251 Courageous
    Hi

    Am really frustrated was all geared up for my follow up outpatient appointment followed by the first acupuncture session this Friday and have just had a phone call from the hospital to say my consultant's clinic this Friday is cancelled. There is one tomorrow which I couldn't do as I didn't have time to sort out transport.

    So now have got to go to Oxford just for a half hour acupuncture appointment this Friday. Then next Friday go for a follow up outpatient appointment. Why can't they give you more notice when they cancel clinics? I've had this clinic date for about 6 weeks so why wait and cancel it 2 days before

    Sorry just had to rant!!

    Helen
  • HymerkarHymerkar Member Posts: 63 Connected
    Hi Helen

    Rant and Rave whenever you want to. Its what this is all about isnt it?

    How did the Acupuncture go?

    Karen
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen

    The acupuncture was ok I'm still not sure about it yet. It didn't really hurt when the needles went in you just felt a small ****. But then you started to get a dull ache apparently that is good it means they are working.
    There were times when I moaned to the friend that was with me that it hurt, he said on those times he could see that my leg had tensed and that was probably why then I assume my leg relaxed again and it stopped hurting.

    When the physio came in and twiddled the needles it was slightly painful as by the time she came in the dull ache had worn off and by twiddling the needles it started that off again. Yesterday afterwards my legs were going into spasm alot more than I'm useful which was painful at time. The physio said that's to be expected within the first 12 hours. I was also very tired after.

    Today my leg still aches every now and then and my tendons aren't too bad but every now and then they are going really tight. They are more tight at the moment than when I take the Tang Kuei supplement I started taking. I haven't taken it the last few days I want to give the acupuncture a chance.

    I've got another 2 appointments for acupuncture one on the 17th and one on the 26th as the physio thinks I may need a few sessions before we decide if it's for me. Though in the patient booklet she gave me it says to have between 2-6 sessions a few days apart. I wonder if this time gap in between is going to be too big for me to really tell if it makes a difference.

    Oh and just to finish off I got home yesterday to a letter confirming my new appointment with the consultant on the 7th March, I got up this morning to a letter cancelling that appointment and givring me another one on the 14th March which I can't do so I've got to ring on Monday and reschedule!

    Helen
  • pantherpanther Member Posts: 251 Courageous
    Well what can I say the physio has discharged me after one session of acupuncture because I didn't really get on with it. Though she waited until we'd got there before she asked how it was going then said oh I don't think it's worth doing another treatment if it didn't seem to help, just take the painkillers like you were.
    She's told me that this could be the best things get or it could be that it's still early days and things may improve slowly.

    But it hit me last week just how tired I am no matter what I do or how much sleep I get. I've been tp;d ot's not surprising and that I should cut myself some slack. But how do you do that when you're the only person there to do things. Who else is going to make me a cup of tea, do the housework and the cooking if I don't do it?

    Yes looking back I probably pushed the recovery I know only a few weeks into my recovery I was hoovering through the house the bits I could get to from my chair, but that was only because no one else would do it. So I guess it's hardly surprising that I feel so exhausted now. But if there is no one else to do it what am I supposed to do?

    All people ask me now is are you walking yet the minute I say I'm walking indoors you see the relief on their face of oh good she won't ask me to do anything. All through my surgery there was only 2 people who were around that would help. But they are busy one runs their own business and is really busy with that the other is retired but has a lot of grandchildren and a family that obviously come first. So I tend not to ask for their help because I don't want to put more pressure on them than what they've already got and I don't want them to feel guilty if they have to say no to me.

    So I guess there isn't really an answer as I'm already only doing the everyday things I have to do to live but am exhausted. The other day I could of easily gone to bed at 5pm I was so tired but had to force myself to stay up and cook a meal first. I haven't felt that tired since I was working.

    Anyone got any thoughts on how I can get through this blip at the moment?

    Helen
  • HymerkarHymerkar Member Posts: 63 Connected
    Hi Helen, Sorry to hear you are so down, my heart goes out to you HONESTLY. As you know I have had a few 'blips' myself recently with the weak back and trapped nerve etc. What I wanted to say is that now I am on the mend, I cant beleive when I look back just how exhausted I was ALL THE TIME. I am still very tired and am usually i bed by 9pm if I havent already fallen asleep on the sofa, but at last I seem to be getting less tired each day.

    The only advice I can offer is that you do the absoloute minimum, sod the housework, just do what has to be done and no more. I controlled mine in the end with the Baclofen, which I know you cant take, and the Co-Codamol for the pain. I took less and less of the painkillers until I only needed one before bed and another about 5am because the pain was keeping me awake. I have weaned myself off them now.

    The doctors and physio just dont know what to do, I have had to sort it out for myself. They have stopped the hydro, which was the only thing helping, because they can only offer it for so long!! So back on my own. They told me to go to the local pool, but I have explained, on several occaisions that the water is too cold, it sends me into complete spasm, but they just look at me as if I am making it up.

    There has been times, during all this when I just sat and cried because I could see no end to it all. Luckily I have a fantastic understanding boyfriend, who has helped me through all this, but this didnt mean I could put on him to do everything. I have still tried to do my bit with the house and cooking, which I am pleased to say is now back to normal. This is where I can see how hard it is for you Helen, being on your own and not even having someone to make a meal for you. Please try and stay positive, I am sure things will start to improve for you soon, try to take things very very slowly and rest as much as you can. If you feel like a sleep during the day - why not, listen to your body.

    Have you read the advice leaflet on this site on ageing with CP? It helped me to realise why I get so tired, and that the only answer is to rest. People kept saying to me, of course you are tired, but it will get better. This advice sheet made me realise IT WONT. Pushing yourself to the limit is not the right thing to do - why has nobody EVER told me that? Since reading that I have started to realise that I am not just lazy and unfit, it is all part of my CP.

    I am away at the mo, my boyfriend is working away so I have had to come with him, as I cant stay on my own just yet, so my internet access is intermittent. Hope it helps to know you are not alone, feel free to scream and shout. Take care and relax as often as poss. Bye for now. Karen
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen

    Thanks for such a supportive reply. Glad to hear you are on the mend. I know exactly what you mean about ageing yes I've read the factsheet think I know it off by heart but there are still days and times when it gets to you and you push yourself to the limit.

    I know there's lots of things I should do in moderation but I tend to forget or just think I can do more than I actually can do. I've gone back on the herbal supplement I was taking and don't feel so bad. So will see how things go.

    Take care

    Helen
  • HymerkarHymerkar Member Posts: 63 Connected
    Hi Helen, How are you feeling? Hope you are still heading in the right direction. I had some advice from my sister recently who suffers from Fibro Milagia and sometimes she is so bad with it that she cant get out of bed. She said she keeps a diary and writes in it how she is feeling and what she can and cant do each day. This way she can look back as the weeks pass and say to her self, well, crikey, I couldnt do that last week. No matter how small the improvement is, at least it is encouraging to know that things are not on a downward slide, even though the uphill seems to be slow. I didnt actually write it all down, but found it a help to look back and remember just how bad things had got, and I soon realised that each day I improved slightly. Although I still have days when I feel down and fed up and cant get myself going, they are not as often as they had been. Hope that makes some sense!

    I have recently got back in touch with an old school pal who also suffers from CP, I think I have mentioned her before. She has a regular physio and has done for many years. The physio as always seemed to be on top of her CP and has been a great help - until now. My friend has recently had back problems similar situation to myself, and has now been told she is trying to do too much, the physio has told her she is to get a power wheelchair and take to it and not walk at all ever! My pal is devistated and is very worried that she will go stiff and not be able to walk or move around even if she tried. She dosent know what to do because if she dont take the advice her physio will not want to help in the future.

    Why, as adults with CP are we left to fight this battle alone? Surely someone, somewhere has some knowledge and an interest enough to be able to help us. We are obviously not alone, there are lots of us. Perhaps we need to start a campaign to get proper advice for adults with CP.

    Well thats enough rambling from me. Take care

    Karen
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen

    I'm better than I was the other week I knew the bad bit would pass but it doesn't stop it getting to you when they happen. I had lots of early nights and didn't worry about the housework etc! Had other things going on as well and think I was also very stressed which wasn't helping the situation. Things are slowly getting better.

    I went for a walk yesterday and managed to walk the most I've walked since my surgery. I walked pushing my wheelchair then sat in it and wheeled myself home when I felt I'd had enough. Although last week a friend said to me you say you don't walk very much but the amount of time you walk about indoors is probably alot if you added it all up!!

    The advice from your friends physio sounds a bit harsh I'm not surprised she is struggling to cope with it.
    What is she going to do? Has she got an understanding gp that she can talk to for some advice on what the physio has said. Or could she not get the chair and use the chair when going out but walk about indoors that's what I do with my chair. I only really use it indoors if I'm feeling really tired or if I'm feeling really tired but need to prepare nad cook myself a meal.

    As to why do we have to fight so much as adults I still don't know the answer to that one!

    Take care

    Helen
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen

    I forgot to say in my reply I go back to the hospital next Friday to see the consultant. So look out for the update on where I go from here!!

    Take care

    Helen
  • HymerkarHymerkar Member Posts: 63 Connected
    Hi Helen,

    I havent spoke to my friend this week so not sure what she is going to do.

    I was pleased to read that you are at last getting somewhere. Take your time, it will come eventualy I am sure. I try to do the same as you, stay on my feet as long as possible, but use my chair when I get tired and I have now realised that my walking gets so poor when I am tired that it really isnt a good idea to try to carry on. But there are times when you have no choice, like when a meal needs to be cooked etc. However, as I said in my last msg when I look back now, I can see that I have improved even if it isnt quick enough for me!!

    I hope all goes well for you on Friday, and will be interested to see what the consultant has to say now. I am struggling with my bunions, but after reading all this I think I will struggle on for as long as I can. My second toe is causing a lot of problems at the moment as it has turned right over. Since I got the trapped nerve in my back and it caused my left leg to keep going into spasm it has pulled my big toe over even more. The shoe man at the hospital said it has reduced my shoe by one size! Its quite painful some days and I have tried the bunion reliever from the hospital, I was supposed to sleep in it, but as I cant walk with it on I couldnt get up to go to the loo. I cant reach my feet to get it on and off, so really it was no use at all.

    Well, good luck, keep plodding on, bye for now.

    Karen
  • pantherpanther 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
  • pantherpanther 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.
  • speedyinpainspeedyinpain 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
  • HymerkarHymerkar Member Posts: 63 Connected


    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
  • pantherpanther 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
  • pantherpanther 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
  • HymerkarHymerkar Member Posts: 63 Connected

    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
  • pantherpanther 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
  • HymerkarHymerkar Member Posts: 63 Connected

    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
  • pantherpanther 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
  • pantherpanther 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
  • HymerkarHymerkar Member Posts: 63 Connected

    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
  • pantherpanther 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
  • pantherpanther 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
  • speedyinpainspeedyinpain 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
  • pantherpanther 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
  • HymerkarHymerkar Member Posts: 63 Connected
    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
  • pantherpanther 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
  • pantherpanther 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
  • BelleBelle Member Posts: 5 Connected
    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
  • HymerkarHymerkar Member Posts: 63 Connected
    Good luck for 9th June Helen, will keep a look out for the results of the MRI.

    Nothing to do with CP, but after recently being discharged from hospital for somthing else, I was told that I would be followed up by the opthalmology department, and the Nurology Outpatients. After hearing nothing, I went to my GP, who immediately got on the phone and after 30 mins of her being passed around the hospital and then told to ring Liverpool, because that is where the Neurologist is based, (I Live in Wales) she was told that I had been discharged with no further appointments necesary. At which stage she blew her top. Because I am on medication which she cant control, it has to be monitored by the hospital. I had two appts within a week and now having regular outpatients appts, so there was no way I should have been discharged. We received a half hearted 'sorry, she has been missed off the list' from one of the appointment clerks.

    YOU GOT TO WATCH THEM!!

    Karen
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen

    Haven't had my appointment yet but received two letters in the post today they were general clinical notes which seem to be a new thing the hospital is doing in that they send you a copy of the clinic notes that they send the gp.

    One letter said that my MRI was normal and they could see no reason for my pain or symptons. This letter also went on to say that the consultant now suggests a gait analysis and that he will see me in clinic after the gait analysis

    The second letter was just a copy of the consultants request to the gait lab for me to have a gait analysis. I don't want a gait analysis so am not really happy. I've spoken to the secretary today and she has advised me to keep the appointment on the 9th June so I can discuss my concerns about the gait analysis. I've also made an appointment to talk to my gp about the letters I've received today and will see what he suggests.

    So it looks like I'm just going to have to put up with the pain in my hip and accept that it's part and parcel of the cp or part and parcel of getting older and having cp.

    Helen
  • ConcernedmomConcernedmom Member Posts: 2
    Hi Helen: I have just read your blog. My daughter is 27, has CP, and is about to have bunion surgery. You have went through so much. I am now scared for her. How are you doing now?
  • ConcernedmomConcernedmom Member Posts: 2
    Thanks Helen: I appreciate your honesty. I am glad that you said if you had to do it all over again, you would still have the surgery. Thanks for your blog!
  • pantherpanther Member Posts: 251 Courageous
    Hi Concernedmum

    I am doing ok I had more surgery in December last year because I had a small piece of bone trying to push through the ball of my foot on both feet. I had the right one operated on in December.

    At some point I will need the left one done. But I saw the consultant last week he has said as I am still getting some pain from the right foot they could go back in and have another look. Likewise as the left one is slightly more painful I can think about having that one done as well. But is all a question of what I can cope with. At the moment I can cope so am not going to go down the route of more surgery. I go back to hospital in 6 months if nothing has changed I will be discharged for now but can go back any time I feel I need to.

    Don't be too concerned for your daughter with me the bunion surgery started off one complication, when that was corrected the correction caused another. But that doesn't mean the same will happen to your daughter. I am just difficult and if there is going to be complications you can be sure I will have it!!

    I have had a good surgeon through out who fully understands cp and have been able to explain all the reasons why the next thing has happened and what the options are. Not sure I would of trusted anyone else to see me through this process.

    For me I felt I had to have the bunion surgery as if the alternative was to end up in a wheelchair full time without it because I couldn't put shoes on sounded silly. Funnily enough my partner and I were tslking about this yesterday. Would I of done things differently no I wouldn't it's been a long journey but I don't regret it.

    I'm sure there are many other people with cp that have bunion surgery without any problems so don't let what I've been through put you off. I'm sure you have had a consultant explain all the pros and cons of the surgery to you and your daughter.

    I hope all goes well for her let me know how she gets on.

    Helen
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