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here we go on the CP merry go round

speedyinpainspeedyinpain Member Posts: 52 Listener
edited June 2014 in Disabled people
This topic describes my current situation managing my condition.

Replies

  • speedyinpainspeedyinpain Member Posts: 52 Listener
    If you are wondering why i gave this topic this title, well about after a year or so of managing by condition with exercise and limited medication. The pains resurfaced on saturday 27 November 2010 with the aches and pains in my shoulders, I now feel that i am back to square one. So the only option is to increase my medication and the amount of exercise I do, and rely on the techiques that i learnt while in the Rehab Unit at The National Hospital Queens Square London in 2009, while trying to get on with life and manage my condition.

    Andrew
  • pantherpanther Member Posts: 251 Courageous
    Hi Andrew

    That doesn't sound like you are having an easy time of things at present how are things going? I know with all the cold weather at the moment I'm also struggling with things.

    Unfortunately for me things are made worse as I've got pending surgery in the new year so am currently off all medication prior to that. So there's lots of gritting of teeth going on at present.

    Just know whatever you're going through you're not alone.

    Helen
  • kingboy25kingboy25 Member Posts: 139 Listener
    Hi Andrew
    Did the re-occurrence of your shoulder pains coincide with the colder weather. If so try to warm up that area as well as doing your exercises. My son has massage in a Chinese medicine shop and finds it very beneficial. Of course this costs for each treatment so maybe look at buying massage equipment which targets the area. I have a string of massage beads which I use in conjunction with ibuprofen jel but any warming jel or cream will do. My beads cost
  • pantherpanther Member Posts: 251 Courageous
    Hi
    First of all I'm not sure why pain always gets worse when the weather is colder I think it might be because the cold stiffens u the muscles more hence more pain etc.

    With regards the surgery and things I'm not sure if baclofen is a tablet they would say you have to be off so long before surgery can go ahead. Your GP maybe able to tell you or try ringing the consultants secretary and asking her if the medication your daughter is taking is ok for her to carry on taking prior to surgery. I assume you will be asked to attend a pre op assessment appointment before the surgery takes place you could always ask the secretary about that also when you ring.
    I only know from my own expierences that I've always been told I needed to come off of various tablets for so long before hand like anti imflamatories etc but the secretary would be able to find out more for you.

    If you get a pre op appointment then ask questions like what follow up will there be, will physio be put in place it should be but ask for it anyway to make sure if by any chance they say no make sure you insist on it!!
    Have you got a wheelchair at home for your daughter? If not find out if you will be able to borrow one from the hospital to help once she is home especially if she is not going to be able to weight bear for 6 weeks. If the hospital can't loan you one try speaking to your doctors surgery find out if there is something like a Red Cross or St Johns Ambulance organisation near where you live that offer medical loans.

    I'm sure when it comes to pain relief the hospital will sort you out with painkillers before your daughter leaves hospital I know I'm forever bringing home bags of painkillers when I come out of hospital!!

    With regards extra help at home again speak to your doctors surgery and ask them what you have to do if you think some extra suport may be needed at home. I assume they will say it's down to your local social services. It might even be worth contacting your local social services as well and asking them would they give you any extra help at home with your daughter once she is home. Although don't hold your breath unless you already have support at home provided by social services I doubt you will get any if I'm honest. I know from my own expierences that although I lived alone and I was told I wouldn't be able to weight bear for 6-8 weeks social services just turned round and said your house is wheelchair accessible get on with it!! If you need anything get friends or family to do it for you!!

    Good luck with it all I hope I haven't frightend you too much with some of this information I hope some of it is useful to you. Hang on in there I hope all goes well with your daughters surgery keep us posted and if you have any other questions just ask will try and help if I can. Take care xx
  • JDWilsonJDWilson Member Posts: 90
    Why does the cold weather cause more pain? My daughter is 11 has SD CP and she is also complaining more of pain. She is due to have 2 Major ops in Feb. We havent been told anything about reducing her meds or anything like that YET? She takes Baclofen every day. Think we should be getting an ap to discuss things in Jan. Any suggestions on what we need to ask. eg After care? Home support? Pain relief? Not sure what we need to know. She is getting Bone surgery involving breaking bones repositioning them securing her ankles No weight bearing fore 6 wks She'l have casts on below Knee both legs. 6 wks later she getting muscles and tendons done. She hasn't had any ops yet so I'm just churned up for her Trying to stay possitive. Good Luck with your op. Take care.
  • speedyinpainspeedyinpain Member Posts: 52 Listener
    Hiya

    The short answer to your question is yes and no. The reason for the re-occurrence of shoulder pain is due posture management and what's happening with muscles and the weather.

    I used to have Chinese massage treatment from a chinese doctor based locally to where i live. I found the treatment was very costly, and the benefit lasted a short time. So i decided to stop the treatment. So I am back to exercise and medication.

    Andrew
  • speedyinpainspeedyinpain Member Posts: 52 Listener
    Hi Panther,

    Your right but i am straying positive. It means i have to exercise more and get back on the medication. I'd love for science and Neuro specialists to determine what causes or prevents a relapse in the difficult and un predictable factors that are part of living with CP eg pain, tiredness, muscles weakness, difficulties with balance etc

    I am shocked to hear that you are having to prepare yourself for another round of surgery in the new year., We can only hope and pray that get in right this time.

    Take Care
    Andrew
  • JDWilsonJDWilson Member Posts: 90
    Thankyou that Has been Helpful. re Physio Has said She'l only get 1 session a wk so it will be down to me If she gets Hydro therapy after 2nd op that will be her session. wow Lots of help there eh? Got wheelchair already so that will be OK her bedroom is upstairs so that will be a problem. Maybe have to put her bed in diining room but then I'm upstairs when she needs me :-( She is 8.5 stones so a lottle heavy for me to carry up and down Just have to play it day by day. We'le manage we'le have to no-one else gona do it. We are suppose to be going to Newcastle in Jan for pre op assesment not heard anything yet so will ring again. 9 wks to go Gosh coming round now, Lets concentrate on Xmas then worry later (I wish) Thanks again for replying. Trying to stay possitive. Carn't help but worry though. xx
  • pantherpanther Member Posts: 251 Courageous
    Hi Andrew
    Thank you for your best wishes with the next round of surgery I'm sure there will be plenty more of my rambalings on here after the 14th Jan when I go for pre op and hear more and then after the 3rd Feb after the surgery. If I'd known the bunion surgery would of caused so many complications not sure I'd of had it done now. But maybe I'm just akward maybe other people manage to have it done without all these complications.

    I think the problem is none of the neurologists really understand what is happening to people with cp as they get older or things like how the cold, stress, etc can all cause extra problems. I know for myself with all the changes to incapacity benefit and the bringing in of ESA and getting disabled people into work and the changes currently being consulted on about changes to DLA my stress levels have gone through the roof causing lots of sleepless nights which in turn impacts on everything the next day as well as starting my stress related seizures off again that I had got under control and hadn't had any of for a number of years now.

    Good luck with getting back on track with things and know your not alone with it all. Take care Helen
  • speedyinpainspeedyinpain Member Posts: 52 Listener
    Update

    I had a orthotics appointment yesterday at the National Hospital Queens Square. i was told that there is not much more that be done for me at the moment. The orthotics specialists reasons for the raised heels on my shoes and insoles i totally understand and agree with particularly the raised heels as this has helped to straighten out my lower back. A further difficulty i have is I don't have proper foot to floor contact as my ankles at very tight. The insoles change the position of my feet, but cause my feet to slip forword in my shoes. I have found that without the insoles my shoes are better for my bunions. However there is a danger that i could start draging my feet again it's a catch 22 situation The Orthotics specialist will make a referal to a foot specialist in stanmore orthopedic. The surgeon will decide whether it would be benefitial to do ankle and or bunion surgery.

    Any opinions or advice welcome

    Andrew
  • pantherpanther Member Posts: 251 Courageous
    Hi Andrew

    You've been around on this forum for awhile now so no doubt you have seen my post that is on here somewhere in the my life section about biunion surgery and cp if you search for that you will see it was an in depth post about my expierence of having bunion surgery. And I know you've also seen some of my other coments about further surgery that I've had to have since the bunion surgery as other problems emerged. As you saw from one of my recent posts I'm due back in for more surgery in the new year.

    Despite all of the issues that the surgery has thrown up I can't say I regret having the bunion surgery done. I guess this is because my consultant laid all the cards on the table for me before I made any decisions and explained that if I didn't have the bunion surgery done I'd end up in my wheelchair full time because I couldn't put shoes on. Put like that it seemed silly to not go ahead with the bunion surgery if I meant that I wouldn't yet be in my wheelchair full time.

    My advice would be have a good chat with your consultant before you make any decisions about anything. Get him to lay out the fors and against going ahead with surgery, what he thinks the future will be if you don't have it done etc. My outlook was also if I try the surgery and it helps it's a bonus, if I do the surgery and it doesn't help or makes things worse at least I'd know I'd tried all I could to help the situation and wouldn't sit wondering what if...... in years to come.

    Hope some of this or some of the stuff in my other posts on bunion surgery is helpful to you in making a decision. Give me a shout on here if you want to talk some more about it. Take care Helen

    Hope some of that or some of my other posts on bunion surgery is helpful to you in making your
  • HymerkarHymerkar Member Posts: 63 Courageous
    Round and round and round we go. Sorry to hear you are suffering again Andrew, and that you are heading for the operating table yet again Helen, good luck to both of you. I am also having a lot of back pain again and have decided for myself that it is my posture when walking which is causing it. I am going to ring tomorrow to see if I can see the podiatrist again. My orthotist has told me there is nothing more he can do. I have hospital shoes, boots etc supplied with insoles, but he seems to make them too big. Yes, they have to accomodate my bunions, but they also need to hug my feet instead of allowing my feet to move around, causing rubbing to my toes. The podiatrist, on the other hand seemed more understanding, agreed with me re the size of my shoes and made me some better fitting and more supportive insoles, but unfortunately they have caused my feet to slide towards the outside of my shoes, causing problems with my little toes - I am not sure what the answer is.

    My neuro physio, who was very helpful, arranged for me to have 6 wks hydro and referred me to the podiatrist in the first place, seems to have lost interest. I havent heard from her since my hydro ended. Maybe I ought to remind her that I am still here!

    Well, HAPPY NEW YEAR to all of you, and lets hope 2011 brings us some answers.

    Take care,

    Karen
  • JDWilsonJDWilson Member Posts: 90
    My daughter who is 11 is having problems with her shoes too because of her bunnions and deformations. As you say manage to get the width and the foot moves even with AFO's on get them to fit and because the toes are pushed across towards her little toes her little toe is Crushed. I can spend 20 mins of a morning trying to get her shoes and AFO's on We do stretch her trainers with one of those shoe stretchers which Sometimes helps other days argggghhhh NOTHING helps so the brace and shoes end up FLYING across the room. She is due to go for multi level surgery in 6 wks I'm not sure if they are doing her Bunnions at same time or not yet? I hope they do because she won't beable to weight bare for 6 wks anyway so it would make sence to me they may say she's going to have enough to recover from without it. Il ask when we go over. Life not easy at times. NO easy options.
  • speedyinpainspeedyinpain Member Posts: 52 Listener
    I am having a funny time of it lately. I have been taking my medication as agreed with my consultant. I am still trying to work out the dosage particularly for tizandine, yesterday for example i had to take 4mg (2 tablets) while at work to control leg spasms.

    The blessing is i hate to say it doing exercise daily at home appears to be helping my muscles, now i just need to know how do i switch off the pain in my shoulders hmmmmmmm. I am also weight bearing better though my legs, so i guess there is some progress.
  • pantherpanther Member Posts: 251 Courageous
    Hi Andrew

    Good to hear you are making some progress with the tablets and exercises with your spasms and pain. Lets hope that you can find some way of helping the pain in your shoulders. Good luck.

    I'm gearing up for more surgery have pre op appointment this week then surgery beginning of February so am back on the surgery merry go round again.

    Take care
    Helen
  • acrossthepondacrossthepond Member Posts: 36
    Hi Andrew and Helen,

    Andrew, I hope you find a solution to your shoulder pain and spasms so that you can get some relief. I can't help but wonder if you are dealing with arthritis, caused by CP. After all, our bodies go through so much wear and tear because we must compensate somehow to perform everyday tasks. It would seem logical since abnormal gaits alone throw our bodies out of alignment endlessly. While I'm not a doctor, I know my pain increases when the weather is cold. Regardless, I hope you find something that helps.

    Helen, Good luck with your surgery. I hope that you get the benefits and relief that you are seeking. I hope that you and Andrew will keep us updated on your progress too. I hope this New Year is a good one for us all.

    I haven't gone for the Baclofen trial because I haven't resolved my issue with the one doctor that I mentioned in my earlier posts. However, my Botox shot doctor, has brought up the issue again and believes that the IB pump might help. He doesn't know about my experiences with the doctor who would be doing the Baclofen trial...the saga continues.

    Regards, Joyce.
  • speedyinpainspeedyinpain Member Posts: 52 Listener
    Hi Joyce

    Sorry I have not replied till now, i havn't been on here for a while. What you mention about arthritis, and abnormal gaits is very interesting . I must say that when i memtioned a gait study for my self at the Neuro hospital working with me before i didn't get a reply to that option. This could be bacause the Neuro specialists don't have all the answers, or most likely that doing a gait study for adults with CP is hard work, and could throw up more questions than answers.

    I hope that your Baclofen trial goes well, and you are able to get some benefit from using it

    Regards
    Andrew
  • speedyinpainspeedyinpain Member Posts: 52 Listener
    Update

    I have recently been experiencing pins and needs in my hands and toes. I am can feel the strange tringle your get with pins and needles in my hands as i am typing.

    I wonder wheher it is caused by circulation problems. trapped nerves, or the corns that i have on my toes due to how i walk. I am not sure what maybe causing it, but these are things that might be cause as i suffer with corns and circulation trouble. I am keeping a record of this and discuss this issue with my consultant at my next visit in August.

    In the mist of all that we may be dealing with you have to try and stay positive and carry on as best we can with the support of family, friends. I find it's important to be able to laugh at ourselves.

    Andrew
  • pantherpanther Member Posts: 251 Courageous
    Hi Andrew

    Like you I haven't been on here for a long time. I don't believe a gait analysis is any harder in adults than it is in children I had a gait analysis back in 98 I think it was at the Nuffield Orthopaedic hospital in Oxford. It gave a detailed report and gave the physio I had at the time and the doctors something to work on. Like Joyce mentioned they did say I could develop arthritis as I get older due to my gait.

    They also as a result of the gait analysis tried making shoes for me but it was then decided that the shoes I wear gave me more support.

    It was my GP that requested the gait analysis maybe you could talk to your GP and see what they think.

    Hope that helps take care

    Helen
  • speedyinpainspeedyinpain Member Posts: 52 Listener
    Update

    I am still expencing pins and needles in my hands and feet. The chiropodist who manages my corns thought that it could be caused by the fact my shoes are too small in his opinion. I saw the GP today
    29 June 2011 and discussed my thoughts relating the cause. She felt is was most likely due to the contracting of my muscles in my feet. We looked at my recent blood test, everything came back normal particularly blood sugar levels which rules out diabetes. The gabapentin seem too take away the pins and needles for a short while then it returns.

    While in some ways the visit to the GP was largely a waste of time, i am grateful for her honesty, but it still doesn't explain the cause. I agree with her suggestion to review my exercises. I will hope to discuss things in more detail with my consultant, and continue with my medication etc

    Andrew
  • speedyinpainspeedyinpain Member Posts: 52 Listener
    update

    I have had a lot of appointments recently i saw an Orthopaedic surgeon on 28th july regarding ackle lengthening etc. The surgeon felt this would not be a good idea as he said there is a chance that i wouldn't be able to walk, or i'd walk crouching at the knees. He suggested lengthening the muscle around the calf area or something like that. Before any surgery is considered i will have botox injections on my hips and ackles to see if this helps. The consultant feels this will provide more information about my muscles etc

    if surgery is done he would remove bunions etc and break the metatarsals bone in my big toes to straighten it out etc

    i saw my neuro consultant today 2 August and told them about pins and needles, they are going to refer me for a nerve scan, too make sure there is no damage etc

    so while it might seem that i will have a lot of appointments etc in the coming months and pain and discomfort while these procedures are done, i remember that there is always someboby in a worse situation than me.

    Andrew
  • pantherpanther Member Posts: 251 Courageous
    Hi Andrew

    Good luck with all your surgery etc. Word of warning regarding your bunion surgery as you know I had bunion surgery about 3 years ago (there is a post on here all about it!).

    I am still having knock on problems because of that surgery and how it has changed the way that I am walking. On Friday I discovered that I need more surgery as I have a piece of bone trying to come through the ball of my foot, which is why I am in so much pain. I need this surgery done on both feet.
    So 2 more lots of surgery as they have got to do them one at a time.

    It is to do with the fact that the ball of my foot was made smaller by the bunion being removed and as I still attempt to walk on my toes when I walk even though all my toes are pinned straight. There isn't as much of a cushion on the ball of my foot so bone is pushing through.

    If by any chance like me you walk on your toes and they are breaking and pinning any of your toes as part of your bunion surgery be careful all the pins moved when they first did mine including the two that cross over each other where the bunion was as they forgot I toe walked and got me up walking too soon.

    Hope all goes well for you though

    Helen
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