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Bunion Surgery And Cp

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  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous
    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
  • VILA
    VILA Community member Posts: 29 Listener
    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
  • panther
    panther Community 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
  • speedyinpain
    speedyinpain Community 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
  • panther
    panther Community 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
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous

    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
  • panther
    panther Community 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
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous
    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
  • VILA
    VILA Community member Posts: 29 Listener
    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
  • panther
    panther Community 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
  • panther
    panther Community 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
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous
    Hi Helen

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

    How did the Acupuncture go?

    Karen
  • panther
    panther Community 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
  • panther
    panther Community 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
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous
    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
  • panther
    panther Community 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
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous
    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
  • panther
    panther Community 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
  • panther
    panther Community 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
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous
    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

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