Jump to content
Heather Mills - Amputee Forum

Lynne

Members
  • Content Count

    411
  • Joined

  • Last visited

  • Days Won

    2

Posts posted by Lynne


  1. Hi Mike,

    I am in Uk. I had 30 operations to try to save my leg...including wearing a full leg Ilazirov frame for 18 months, turning the bolts every 4 hours.....it was a nightmare! I opted for above knee amputation after the fusions failed.

    I had my amputation 8 years ago, I ended up having 6 further surgeries after amputation because of other issues. I too had closed compartment syndrome, I did not have the information that you have, from the consultants you have seen, ie muscle salvage etc. it seems clear to me that your amputation is not a straight forward one. I think that if you decide to go ahead with it you must accept that it is not going to be an easy process, you probably won't have you amputation, heal, get fitted with leg and walk within the normal time period, ie a few months. Your journey is going to be a hard one. Sounds like you have decided already. I guess I just want to wish you and your family the best possible outcome for you, it will be a hard journey for you all. If you are aware of that initially it may help. I remember having such high expectations, get rid of leg, get rid of pain, more mobile. I looked at active above knee amps and thought that would be me after my amputation. I was wrong, lots more surgeries, failed leg fittings, spending thousands trying to get fitted. Now having to accept that although after 8 years I have a leg I can wear, I can only wear it for short periods of time, I can't walk without crutches. I am not being negative, just stating my facts. I really do hope that your amputation improves things for you, just be realistic about your personal situation and complications and make sure you have the right people on board both medically and personally. The very best if luck to you. I would not wish an Ilazirov frame on anyone so, either way you would have a hard journey ahead of you.

    I don't frequent this site often these days but just wanted to reply as my situation is so similar to yours except that I am above knee amp.

    Keep us up to date with your progress. Good luck.

    • Like 2

  2. I wear a total contact suction socket, just a test socket at moment. I pull myself in with a lanyard bag, through the valve hole, leaving just the skin nect to the socket wall, no socks. Suspension works great ...now just have to get the fit good enough to wear it for any length of time.

    Interested to know why your leg man says that the suspension method you have used for so many years, won't work anymore? What has changed, apart from your leg man. Does he not have the skills of your old legman?

    Hope you find a solution soon.


  3. I agree with Jonny, seems like separate things going on, neuroma's can be easily dealt with. Instability in your knee joint is an orthopaedic issue and I would seek a second opinion. Becoming an above knee amp is the last thing you need, understand your fears.

    Hope you manage to get the help you need with this.

    • Like 2

  4. OMG....I am in shock......lol

    There are quite a few stories on other sites of people who have been reassessed scoring 0 points under the new work assessments and to get the equivalent rate if PIP that means you can still join the Motability car scheme you have to be a permanent wheelchair user. Rules out a lot of amputees. People are having to hand their cars back.

    Some of us have been very proactive in trying to highlight the inadequacy of the new scheme, writing to MP's, house of commons, replying to questionnaires etc, but it seems to no avail. We need to stand as one on this....pardon the pun.

    Sue us around somewhere....hope she drops in soon.


  5. Hi Cheryl,

    Oh dear, not good.

    I agree with what everyone else has said and the only thing I can add is that it sounds like you will have to approach his aftercare in a similar way to caring for someone after a stroke. After all it is one side of his body effected.

    Perhaps you could research it, 'caring for someone following a stroke' ...just an idea. Hopefully when he is fixed up, either surgically or in casts, perhaps you will be suprised how much he can do.

    Good luck......Lynne


  6. As some of you already know, I am not yet an amputee but I am considering it. I have a useless foot after a car crash.

    The doctor told me today I was crazy for wanting an amputation. I have a disorder called RSD from my injury. He told me that the RSD would only get worse if I went through with the operation. I have been upset all week and this is why I dont go to the doctors. I told my pain mgmt dr, that I wanted to move on with my life and be able to walk without pain again.

    Hi Firstborn,

    I do understand your situation, although I found out after my above knee amputation that I had a condition (EDS) that would make it very difficult for me to be fitted with a prosthesis.

    Interesting also that as well as this condition, my pain management consultant and rheumatoligist also feel that I have RSD, this accounts for the level of pain I still experience following amputation and the way pain medications just do not work on me.

    I have had 38 operations now, 31 of them prior to amputation, so the pain levels were pretty severe at the time of my amputation and still are. However I would not say they were worse, they are just the same....if that makes sense.

    I am not sure what I would have done had I known about the EDS and RSD, I was in so much pain at the time, I just wanted it all to end. I am not sure I would have been in a right mind to believe what they were telling me had they suggested that amputation would make me worse......I would have probably gone ahead anyway. When you are in that much pain and it is effecting your life so much you just want some hope...however small... that things will improve, I would still have gone for the amputation. I hope I am making sense. I still can't accept that things won't improve for me, ironically it's that, that keeps me going. I don't know many amputees who have not been fitted 6 years on, or had to have so many revisions. I am in the process of being fitted, but the amount of pain I feel in my stump makes using a prosthesis very difficult.

    The problems you face are specific to you and only you can make the decisions.

    I would be asking lots of questions, no one can tell you how much pain you will be left with afterwards, short term or long term, but they should be able to tell you if the amputation will give you better mobility and function.

    You need to ask yourself if you can live with the continued pain, long term if it means an improvement in your mobility. Would that be worth it?

    One last thing is to be kind to yourself, in this situation it is so very easy for your mental health to suffer. Believe me....I know.

    Feel free to send me a message if you want to.


  7. Snuba,

    Very interesting.

    I have a similar issue when I put my liner on.

    If I stand without liner or leg on my stump hangs down as would be expected. Then I put the liber on and it pulls my stump up towards the ceiling, giving the effect of a hip contracture.

    Obviously there are forces being applied to the stump but I do wonder what effect this has on the donning of the prosthesis.

    By the way, my leg also moves out to the side when I take weight off it. I don't have muscles attached to bone, so may be that is why?

    This is interesting, wonder if others experience it too.

    Lynne


  8. Wonder if it has anything to do with you being knee disartic and your knee being off centre....just a thought.

    Also agree with what was said about using your pelvis more. A good exercise is to wrap a dyna band around your pelvis and get someone to hold the ends they walk behind you. The idea is that they pull on each side as you step into the resistance of the tightened band. Think an exaggerated model down cat walk....kinda walk. Not the high heels just the pelvis swing.

    Hope this helps.


  9. STRICTLY.htmlDetermination

    In the news today. Very determined young man.

    Couldn't help but read it with the thought of how the government inquiry into whether the NHS can come up to the standards of the military for injured soldiers once they are discharged and their care handed to the NHS.

    Seems his parents have had to fight for everything.


  10. Yes, it is interesting.

    I think for the majority of women it is important what their legs look like.

    Until I read the story I hadn't really appreciated it from a mothers point of view and the implications for their children, guess this applies to the fathers too. And come to think of it partners too.

    Does having an amputee parent who does not have a cosmesis effect them in any way? Not something I had really thought about.

    The story also highlights the importance of being able to get on with her life, looking after her kids ect. I seem to remember she had a struggle to get to Selly oak to have the amputation and had put up with pain for quite some time.

    In the six years I have been an aka I have never had a cosmesis because I have never been fitted properly and not reached the stage where any leg made for me would be ready to be covered.

    That may change soon as I have a test socket at home at the moment which is looking the best yet as far as fit goes. Now I face the dilemma of whether to have it covered or not. It has never bothered me before, I wear trousers all the time and shorts in summer. I don't mind the techno look of an above knee and have had laminated sockets made in the past, just a pity I never got to wear them....they looked good though......lol.

    May be I will not have a cosmesis until I am sure of the fit, I will shrink down once I get the chance to use a socket and will need recasting anyway.

    Any way if you are reading this Hanna, good on you for getting the story in the press.


  11. Hi Jane,

    Am I right in thinking that as an above knee amp you need something that stops your knee component hitting the back of your socket when your knee is fully bent?

    I am sure there is something out there.

    I found this if it is any help. Just googles amputee above knee cycling.

    Amputee cycling

    Here is a quote that may be of interest to you.

    The seat height is very important when riding a bicycle. When I first began riding again, I noticed that every time the pedal on the prosthesis side was at its highest point, the knee was bent to its maximum angle. I then raised the seat up so that when the pedal on the prosthesis side is at its highest point, the knee is not bent at its maximum angle, making it more comfortable and easier to ride.

    Hope you find a way around the issue although it may have something tondo with the design of the Kx06, may not be a way around it.

    Best wishes...Lynne


  12. Hi Hema,

    Didn't explain myself very well, with the air pocket cushion you can alter the amount of air in each side. So you could leg the air down on your prosthetic Sid and put extra in under your other side, thus making you more level as well as giving some padding between you and the seat.

    Hope that makes sense.

×