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lynnieb

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Everything posted by lynnieb

  1. lynnieb

    to amputate or not?

    I lost the use of my right arm, (I was right handed) nearly four years ago. I have neurofibromatosis, a genetic disease which means I have tumours all over my nervous system. I qhave been told I will never get the use of my arm back, and at the moment, I'm in a sling 24/7. I'm starting to get problems in my other shoulder cos of the constant weight on it, and the useless arm causes me a lot of pain. Because I can't feel much, I keep burning it, and getting dressed is really hard because my shoulder is fused. The thing is, I've been considering getting it amputated. It is a very hard decision and I just don't know what to do. Once its been done I obviously can't change my mind, but until I havre it done, I'll never know if it helps. How on earth do I make a decision like this? I'm in a lot of pain all the time because I'm only 34 but also have osteoporosis, and scoliosis and iother problems. I just think uit'll be one less thing to worry about. Can anyone help me please??
  2. lynnieb

    to amputate or not?

    Kaz, I'm sorry you think I was offensive, but that is exactly how you came across to me. You made me very upset, when all I did was asked people in a similar situation for their opinions. it is a very difficult for me making this decision, (especially in between other surgery for numerous tumours thast I have). Why did you bring up an old message and question me? It made made feel you were doubting my sincerity. I know no-one else can make this decision for me, but I assumed that others who've been through the trauma of amputation, (and just because the surgery I had didn't physically remove my arm, didn't make it any less traumatic - before operation I had almost full movement, after it, I had none in the arm or shoulder at all) may have had some empathy. It's taken since last July for me to get an appointment with my surgeon, and that length of time is more to do with the shortfalls of the NHS than the difficulty I have making my decision. This is a very hard decision to make. I just wanted was some thoughts and advice from others in a similar situation.
  3. lynnieb

    to amputate or not?

    Kaz, Silly me, I thought I might get a symapathetic ear on this website. You obviously trawled through all my other mesages to seeif you could catch me out? When I said for all intents it is amputated, what I meant was, because there is no use in it AT ALL, it is like living with only one arm. What you need to understand is I live in constant pain. I have tumours in my spine, head neck and aorta. I have a curved spine. I have osteoporosis, and I now have problems in my other shoulder because of wearing a sling constantly. I'm sorry if you don't think I'm being fair, but I'm imn a state or turmoil not knowing what to do. I though likeminded people might be able to be empathetic and offer some advice from first-hand experience, not argue about semantics. Kaz, you have really upset me. I thought this site might offer me a refuge. With friends like you though, who needs enemies? I'd still be really grateful for an opiniom from anyone else in a similar situation. Although I've been told I'll never get the usde of my arm back. I'm finding it hard to make the decision. Thanks.
  4. lynnieb

    slings

    Because I have to wear a sling 24/7, I get through them pretty fast. I wear polyslings, which are made out of grey foam and velcro. The thing is, my consultant hass now informed me it is not my hospitals responsibility to provide mre with them! That has left me in a real pickle. They say my GP should prescribe them. My GP has tried, and not only can he NOT prescribe them, even if he could, my chemist, (pharmicist) couldn't get hold of them. My GP referred me to the appliances dept at my local hospiytal, but they won't accept a refferal from my GP, it has to be from a consultant. So now my GP has to refer me to a consultant at my local hospital, which coukld take a year to get an appointment. I'm on my last sling, and my 'main'hospital won't even give me one sling to tide me over. Once this one goes, I'm housebound. I think this is a disgraceful state of affairs, and I'm considering getting in touch with the media. What dores anyone think? Should I? I'm desperate for slingfs. I can't afford to buy them myself, and shouldn't have to.
  5. lynnieb

    solution for artists!

    A little while ago, I asked if anyone had a solution for a one armed artist. Well, I fouind something really good. It isw by as company called Fiskars (loads on internet sites sell their stuff)and it is called shapeboss. You can hold your paper in place with the pegs that are supplied, and although it's meant for doing embossing, you can do other stuff too. Alternitively, you can use a large cork board, aand pin your work to iyt with map pins. If you need to cut anything out, just put four small cubes of lihght wood in the corners of your work and pin the work to them. Then your scissors will fit underneath. I found this really helpful, and it was just by trial and error I worked it out. LynnieB
  6. lynnieb

    amputate or not?

    I have no use in my right hand/arm/shoulder following surgery for a tumour three years ago. I'm in a sling permanantly, which is now causing me problems in my neck, (where I have another tumour!). I'm in a great deal of pain, and take morphine every day. The thing is, I've been thinking lately about whether I should just have the arm amputated and be done with it. I'll never get the use back, and they won't even consider nerve transfer because of the risk of recurrence. I just don't know what to do. Can anyone offer me any heklp or advice? I'd be very grateful. Lynn x
  7. lynnieb

    Frustrating doctors!

    My consultant, Prof Frostick in Liverpool is very difficult to communicate with. After I lost the use of my arm, he didn't arrange any rehap for me, and very little physio. In fact, the physio just kept asking me to wiggle my fingers, even though he knew I had no use of the hand. He ended up burning me with a hot towel! Nice eh? Anyway, the consultant is never at the hospital when I have appointments, even though he won't let anyone else deal with me. The hospital is nearly an hour away from me, and I'm not in the best of health, so It is frustrating when I have to come all the way home witrh no advice. I can't even get slings from the hospital. Each one only lasts a week, and I have to beg for them. One time they wouldn't give me one because they said someone else might ask for one, and they only had one in stock! Can you believe that? An orthopaedic hospital with no slings? I've even tried buying them myself but I couldn't affored them. Has anyone any advice on how to stand up for myself, without losing my temper? It's getting to the stage where I don't know where to turn. Thanks, Lynnie B
  8. lynnieb

    amputate or not?

    Thank you all so much for your help. It IS a huge decision, and not one I can go back on if I don't like the outcome! The thing is, because I have neurofibromatosis, and therefore other serious medical problems, I can't help thinking, is this just one more problem I could do without? I have spinal., lung, aortic tumours, as well as hundreds of little ones all over. I also have a curved spine so wearing a sling is hard. It is just something I'll have to think long and hard about. Thsnks again, Lynn x
  9. lynnieb

    Dreams

    I still dream of having two working arms, even though it has been three years since I lost the use of my arm. I feel that until I accept things in my dreams, I won't accept things in life. I still get really frustrasted, especially as I have other serious medical problems. I have neurofibromatosis so have tumours all over, including in my spine and aorta. Some days I get very down, even thougfh I know things coukd be worse. When I see how many horrible things are happening in the world I feel guilty for feeling sorry for myself. Does anyonre else have these feelings? Lynn xx
  10. lynnieb

    get a grip!!

    I have no use at all of my right arm/shoulder, (so it is like an amputation really). I'll never get the use back. I used to love art and craft, but since the loss of my arm, I can't manage. It is so difficult cutting when you can't hold the page still, or paintintg when the page slides all over the place. Does anyone know of any aids specifically aimed at people with just one arm? Something to hold the paper steady as I work. I also like to design my own T-shirts, but again, holding the material steady is impossible. If anyone knows of anything I could use, I'd be very grateful. I live in the UK. Lynn
  11. lynnieb

    get a grip!!

    Thank you so much for all your suggestions! I'm going to try and find a website right now for arthritis care and so on and see if they have anything. Thanks again, Lynn x
  12. lynnieb

    Everyones story

    SILLYBILLY I'm from Liverpool, and while it is not the warmest place on earth, I've never heard of anyone getting frostbite here before. In fact, sometimes it gets quite hot! Maybe instead of frostbite because of the cold, it was caused by poor circulation due to drug and cigarette ingestion. Smoking can cause very poor circulation, and as an ex-nurse, I saw many people haveing BKAs because they smoked. Lynn.
  13. lynnieb

    Everyones story

    Hi, my name's Lynn. I have a genetic disease called neurofibriomatosis. That means I have (usually) benign tumours all over my nervous system. I've had tons of problems with it, including scoliosis (curved spine ~ mine was a 90 degree curve) a phaeochromocytoma, (an adrenaline secreting tumour) and more besides. Three years ago, one of the tumiours appeared on my brachial plexus. A big chunk of the nerve had to be removed, because the tumour was low-grade malignant. I lost the use lof the right arm and shoulder and the following year I hasd to have the scapula fused to the ribs underneath to help the pain. Then the year after that the original tumour recurred. I have no yuse at all in my arm, so for all ibtenbts and purposes it has been amputated. It is very heavy, and I have to wear a skling 24 hours a day which pulls on my neck. Some days I feel like asking to have the asrm amputated, but I just don't know. I've been told a nerve transfer/transplant is out of the question. I find life really hard, especially as I can't work any more. Has anyone had any similar experiences? Lynn
  14. lynnieb

    Phantom Pain

    I too have neurofibromatosis - severely, in fact. I have tumours in my spine, aorta, my lungs and face. I lost the uase of my right arm three years ago. For all intents and purposes I have an amputation as it is totally paraklysed from the shoulder to the hgand. I have a great deal of pain in my shoulderblade, shoulder, elbow and hand. The elbow and hand pain is 'phantom pain'. I'm currently awaiting a spinal stimulator top try and stop the pain. I've tried everything else from nerve blocks to aromatherapy, (useless). The Nf has caused me a lot of problems, and I had to give up my job as a nurse in 1996 when I was only 25. I'm finding it a struggle to cope with only one arm, as I also have osteoporosis and a fused spine. What are your experiencesd of nf? Igf you'd like to email me, I'd be happy to keep in contact. Lynn
  15. lynnieb

    Neurontin for Pain

    I took neurontin for several years, the dose constantly being adjusted. I found it totally ineffective, and it made me feel peculiatr. I was already taking it for back pain before I started taking it for neuropathic pain. I continued taking it becausre 'I was so desperate for something to ease my pain. I still haven't found anything... Lynn
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