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surgery update

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  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous
    Hi Helen,

    Im not too bad thanks. Still fighting against surgery on my toes! I havent heard a word from the Neuro Physio since my Hydro ended. So much for her taking an interest and trying to help me sort things out. I suppose I should give her a ring and see what she has planned and a further session of hydro would be good, but like you, I have two things going on. CP and I am still attending the hospital on a regular basis regarding the Intracranial Hypertension - the problem of too much fluid in my brain. This seems to be under control, but has rather taken over our lives for the last 2yrs.

    I hope they find out what is causing your fits soon, thats a worry you can do without. As you have said in the past, our problems are not helped by the current threats of us loosing benefits.

    Keep us informed, hope all goes ok on Monday.

    Hugs

    Karen XX
  • acrossthepond
    acrossthepond Community member Posts: 36 Listener
    Hi Karen and Helen,

    I agree that we are engaged in similar circumstances on many levels but I think that the two of you have had to deal with bigger things for a longer period of time than I have. I hope the two of you find some resolution for your problems soon.

    Right now, things are at a standstill for me and will remain so until I see my doctors in March or April. I am hoping to get some questions answered that will help determine what I do next. I know I won't do anything until at least the spring, if it involves surgery.

    Please keep posting and letting me know how things are going for you both.

    Regards,

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

    How are you? I'm trying not to do too much to soon but it is so boring!! I guess how I'm feeling isn't helped by the neurologist I'm seeing trying to rule out if I have developed epilepsy as well by trying me on some anti convulsants, I've only been on them a few days but they make me feel sick and even more tired at present. That's only on 25mg every 2 weeks I have to increase by another 25mg until I'm on 200mg.

    As for the foot surgery I'm walking indoors the stitches come out on Monday then hopefully I'll be able to get shoes on and will have a better idea of how things have gone. I don't go back to the foot and ankle clinic until the 18th March so won't know for sure all has worked until then.

    Take care
    Helen x
  • panther
    panther Community member Posts: 251 Courageous
    Hi Karen

    Glad to hear things aren't too bad for you and also that the Intracranial Hypertension is more under control but like you say all these things do seem to take over our lives. I feel like I'm constantly at either the doctors or one of two hospitals at the moment.

    I managed to ome off the painkillers the hospital sent me home on after just a few days, and I went back on to the tablets the gp had put me on prior to surgery for the pain with my cp but then this week I've added the anti convulsant the neurologist wants me to try and I'm just so tired all the time. I'm certainly not looking forward to the increase I have to do of it soon as he wants it increased every 2 weeks.

    Good luck if you contact the Neuro Physio again I hope she offers you more hydro if you found that helpful. Though I tend to find you often get someone who says they are very keen to help you and are interested, but then they don't always follow through with what they've been saying to you.

    I've already been to the job centre the week before I went into hospital I was called for an interview just so they could "update their records and check I was disabled"! The man that interviewed me advised me to take a copy of the CP and ageing factsheet that Scope have on here to any further interviews or medicals I get called for and also advised that if I do eventually get put in the work related activity group or am considered fit for work to put in an appeal straight away.
    He made me laugh as he seemed surprised that I knew about the changes from IB to ESA when I asked him a question about it. Maybe they think because we are disabled we don't watch the news or read a newspaper!

    I'm sure Monday will be ok having my stitches out then hopefully I will be able to get shoes back on and get more back to normal for now until I do the hospital follow up!!

    Hope all goes well for you keep us posted.
    Take care
    Helen xx

  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous
    Hiya,

    Thanks Joyce, for your comments, its good to know that my ramblings are of some interest.

    Helen, I know exactly what you mean about feeling as though you spend most of your time either at the docs or the hospitals. We have been the same, between the CP and the IIH, we have been lucky to go 2wks without an appointment over the 2yrs since I was diagnosed with IIH. Things are getting better though, and it is now 8 weekly appts, so cant complain.

    I got called into the Job Centre about 20 months ago, shortly after being diagnosed with IIH. I was really ill at the time, and so tired all the time because my body wasn't accepting the medication. They decided I had to attend 5 interviews with Pathways. The building they were using for the interviews wasn't wheelchair accessible, so Pathways came to my house once a month for 5 months!! At the end of it all they recommended that I stay on IB, and considered not fit for any work, but apparently it is to be reviewed in 2yrs, so thats Nov this year. I will bear in mind, what the job centre have said to you.

    Looking forward to hearing how you are getting on now your stitches are out.

    Keep your chin up,

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

    Interesting what you've said about Pathways I guess the review is part and parcel of the fact they want to stop incapacity benefit and put people on ESA or into work.
    The white paper on welfare reform comes out this week I think it is on Thursday so will make interesting and no doubt frightening reading.

    My stitches are now out and it's just a case of getting used to walking again with the pin in my toe. Follow up isn't until March so will have to wait until then to see how thing have all gone.

    Will keep you posted.

    Helen
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous
    Really sorry to hear this Helen, when will all this come to an end for you, it just seems to get worse each time they try to make it better.

    Hope someone can give you the answer you are looking for soon.

    Take care,

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

    Just a quick update I thought things were going to well!! It's been a month now since the surgery and I'm in so much pain!!

    As well as putting a pin in my little toe and doing a partial nail removal on the other little toe part of the surgery was to inject something into the side of the ball of my foot. Because of how I walk it was starting to spread out too far and cause a lump at the side of my foot that looked similar to a bunion forming. it was supposed to shrink the size of it and firm the kin so I didn't have this srea sticking out at the side which it does look like it is doing.

    But I am now in so much pain because of this injection I can only put very limited weight through the ball of my foot and because of this it is forcing me to try and walk even more up on my toes which in theory I can't really do that easily because all my toes have now got pins in them.

    I can barely walk bare foot at all now as the pain that suddenly goes through the base of the ball of my foot is so sharp and sudden I nearly loose my balance. It is making me really unsteady and unsafe. It will also really hurt after awhile of wearing shoes. And in the last few days have even started to hurt when I am not walking or wearing shoes or slippers.
    If I touch the base of the ball of my foot with my finger I know when I find the spot that hurts because I nearly hit the ceiling!!

    I'm counting down the days until the 18th when I go back to hospital for my first follow up appointment I'm just hoping they can either tell me the pain will stop in time or there is something they can do. But as this was something that was injected I'm not sure they can do something.

    Will keep you posted

    Helen
  • acrossthepond
    acrossthepond Community member Posts: 36 Listener
    Hi Helen,

    You are certainly having quite a time of it. I am sorry to read about all the pain and difficulty you are having. I had hoped that this surgery would be the one that gave you relief. I hope that your doctor is able to do something that will make things better for you.

    The 18th seems a long way off for you to have to endure such pain. Is it possible for you to call the doctor and explain you circumstances? Perhaps you could get the appointment moved up or he could give you something that would manage your pain better until the 18th.

    Keep us posted.

    Regards,

    J
  • speedyinpain
    speedyinpain Community member Posts: 52 Listener
    Hi Panther

    I have just read your update. I am sorry to hear that things are not too good at the moment. I hope things will get a little easier for you, and the pain subsides. Did the hospital offer any pain relief to manage the pain?

    Andrew
  • panther
    panther Community member Posts: 251 Courageous
    Hi Karen, Joyce and Andrew

    Thank you for your coments.
    I could try and move my appointment but I know my appointment on the 18th is with the consultant that did the surgery if I move the appointment I may end up seeing one of his registrars instead so would rather wait
    .
    The pain comes and goes so it's difficult it's worse when I'm walking but not as bad if I have shoes on though it can still get painful then as well.

    I was just told to take paracetomal and codiene for pain when I came out of hospital. Now after surgery I'm back on the medication I usually take for the pain with my cp and the pharmacist has told me with the combination of tablets I take for that I can only really add paracetomal for any other pain relief.

    Take care all of you will update on or after the 18th.

    Helen
  • panther
    panther Community member Posts: 251 Courageous
    Well I've done the first follow up after the last lot of surgery and what a surprise I might need more surgery!!
    The registrar I saw is concerned about the pain I am getting from the base of the ball of my foot so he has requested an ultra sound scan on it.

    Depending on what they show they may try to inject it again with the same as what they injected it with before, that's the easy option as far as I'm aware the injection can be done when I'm awake.
    But it may be that I have chipped or cracked one of the many little bones that float about in that part of your foot. If that is the case then it may well be more surgery to remove those bones.

    And it's just my luck the left foot has now started to hurt in the same sort of way so I think I may end up phoning the secretary to ask if they can do an ultra sound on both feet rather than having to go back at a later date to find out what is happening with that one.

    Am begining to think I live at the hospital!!

    Helen

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