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Heather Mills - Amputee Forum

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  4. Hay guys and girls I’m new to the amputee world just about a year having a lot of trouble with phantom pain any tips other then pain medication for me thanks 

  5. BethMarie

    New to the forum.

    Welcome to the journey. I am sorry no one has replied to you, but this forum is far less active than it was in past years. I think it is due to the fact most people have migrated to the forum on the Amputation Coalition website. This is a GREAT place to chat with other amputees, get excellent information on living as an amputee. Without this organization I would not be a happy amputee. I am not sure where you live, but it is open to all no matter where you live and joining us free. I hope you will investigate it and join in! Peace, Beth Marie
  6. C4RL3N3

    New to the forum.

    Hello everyone I am just starting my journey on this life changing road. I keen to get your understanding on how you feel about things and your families have either supported you or been in denial and rejection of it all. Please, I value your thoughts.
  7. Hello all, I haven't been on for ages but do have a problem. I was offered to try out the suspension sleeve system following a new socket fitting. The socket is very very soft and comfortable BUT when wearing it with the socket, after about an hour my stump starts to cramp and becomes so painful that I have to take the sleeve and socket off till it settles down. This happens on a regular basis and when I examine my stump it is red and had a circular, raised weal at the end of it. My question is does anybody else have this problem? and is it because the rubber sleeve is squashing the arteries or is the socket still not right? I've had 3 fittings for this socket and although comfortable I don't know what the problem is. My leg lady says it should start to ease but this has been going on for 8 months - not every day - but enough to stop me in my tracks. Any tips or ideas on what I should do? I am tempted to go back to the 'elastic strap and buckle' system but not sure. Any advice would be so much appreciated.
  8. JohnnyV

    Return after many years

    Welcome back Glen !! A lot has changed in 15 years. There is a lot more social media option for individuals effected by limb loss. As a result, the traffic on this site has slowed down, but it's still here. Glad that you decided to still be here too. Best,
  9. 7feet

    Return after many years

    Hello everyone, its been about 15 years since I last looked at this forum or posted, life and family prioritised and just became too busy, and I probably thought I didn't have anything else of value to contribute. Anyway I now have time and a real interest in helping especially new amputees. Briefly, 62 yrs old, right above knee amp since 1991, retired, living Queensland Australia. I was a socket wearer up to July 2012, when I underwent Osseointegration by Prof Munjed Al Muderis, I was his 13th Osseo patient. It changed my life in so many ways due to no more socket issues and being able to feel the ground through my prosthesis, which makes walking feel so much more normal, being able to sit on a bar stool, and not break toilet seats, and not wear out the back on a pair of pants. As said my interest is helping fellow Amputees, I am a volunteer Peer Support for Limbs 4 Life Australia, as such we visit mainly new amputees, or "prospective amputees" either in hospital or elsewhere to provide an ear etc. All those years ago I suggested to Johnny V that there should be a forum named "A funny thing happened on the way to the forum". i just had another look and there are still some great stories. Regards to all Glenn
  10. BethMarie

    Oh well

    Hi, You are not really being ignored, although I sure understand why you feel left out to dry. This forum used to be VERY active and usually there would be many responses. This forum has lost that activity, mostly I believe that the participants have migrated to Amputation Coalition site. If you do not know it, it is well worth exploring it. There is a similar site as Heather's and a great source of information and other amputees. I am finding answering on this forum difficult, but I wanted to help you!
  11. rehjaeger

    Oh well

    I posted 6 days ago hoping to be able to reach out to some in the amputee community for some camaraderie, some input... wasn't looking for sympathy, just someone who might understand a little about the things an amputee faces. But, no one has bothered to reply, even just to say "hi" or something. so I guess I'll find another forum that may have more active participants. Thanks anyway, Heather Mills.
  12. Hello, all - My first posting here. I am 63 and a L AKA which was the result of a freak accident involving a garden tiller, the tiller hit a rock and jumped, gouged my left leg above the knee. Hospital visit, the usual - they irrigated the wound (which was about 3/4" deep and about 5" long), stapled it up and sent me home. About a week later my wife, who is an RN, said it was beginning to "stink" - I have a poor sense of smell and it didn't look bad to me anyway, but off to the hospital where, after rounds and rounds and rounds of IV antibiotic therapy and debridement they told me they couldn't save my leg. I was in a great deal of pain and nearly delirious by this point, not to mention the pain meds' having altered my consciousness, so I went ahead and let them hack my leg off. If I knew then what I know now, I would never have let them do it, I would have forced them to let me die. After some PT with my new (very primitive, friction-actuated) leg, I was doing a little better, but having to remember to kick the leg out every time I took a step to lock it was hard to remember, and I fell a lot. Then, after a couple of months' PT I began to not be able to do much of anything without losing my breath, no stamina, etc. Long story short, a cardiologist visit turned up that I had not one but two blocked arteries in my heart, so bad that the doctor said that a simple piece of wire could have completely blocked them. I had a 2-artery CABG procedure. After the surgery, I was told that the prosthesis, a newer one, was too heavy for me to lift with the weight restrictions after surgery, so I did not walk afterward. By the time the restrictions were lifted, my stump had swollen to the point that I could no longer get my socket on. The cardiologist said this was "not uncommon." So, now, I have to fight the insurance company to get another socket made, and that took about 2 months. Meanwhile, losing stamina and will to live. Finally got the new socket, and began having malfunctions on the new leg (now that it was being used more) and could not keep it working. It was like an old 70's British sports car, nice to look at (in a gruesome kind of way) but very unreliable. Lost more ground. Was finally beginning to see the light of day on this (I thought) but it turned out to be another damned train. Very bad case of the flu turned into viral bronchitis for which I had another hospital visit. Seriously, I'm not making this up. The next step was that the depression drugs I have been taking since (the also-bizarre circumstances regarding) my mother's death began to become ineffective. I have a wonderful counselor and psychiatrist, and they have been trying their best with various therapies and drugs. The last one I was on was a drug for ADHD, since all of the ones they'd tried before just had no effect at best, and at worst made me a crying vegetable. The ADHD drug killed my appetite, and guess what - now the socket doesn't fit again. I used to hunt, and fish, and had a beautiful collection of vintage motorcycles (which I have had to sell) which I rode almost every day all over the countryside, I built a raised stone garden since I love to garden and we live on a hill where there is no soil (this is where the accident occurred, btw), I was a competition shooter and was on an international team.... I think you get it. All of this has been taken away from me. Every time I try to get back into PT and start where I got dumped the last time, something else happens. I was on a single-point cane, for pete's sake, and now I'm back on a rolling walker. For the third time. The last time I went for endurance I walked less than 100' before I was completely, totally flattened with exhaustion. My life consists of getting up in the morning, feeding the dogs and cats, working (fortunately I work from home), taking a nap when I get off work, and then feeding the dogs and cats again and going to bed. My wife travels a lot so I'm by myself pretty much all the time, with extremely limited opportunities to get out or do anything since I cannot load or unload my wheelchair by myself. Like I said - had I known then what I know now, I would have elected just to go into hospice and get buried with both legs. Sorry for the long, drawn-out whine. I'm just completely at the bottom of the barrel for "try" and my anger and rage at my situation and not being able to do anything boils over from time to time. Thanks for letting me vent.
  13. Hi all, my names Lianne and was just looking for someone to talk to, people who may be in the same position as myself or my mum. My mum had a motorbike accident 5 weeks ago which resulted in having an emergency amputation above the knee of her right leg to save her life. Also she has no feeling in her right arm at all at the minute but the doctors are looking at the nerve damages. My mum is worried about not being able to have a prosthesis as her amputation is quite high, does anyone have any thing they can relate and share with me? And also how independent my mum will be able to be as she is a strong woman who loves her independence. Thank you xxx
  14. Kathycmc

    Electric Shock Type Spasm

    Has your Dr. ruled out a neuroma?
  15. Kathycmc

    Need advice leg irratation

    Hi Clay. Firstly it sounds like you need a new socket. 6 months is a long time to go with your initial socket. I needed a new one after 3 months and 30 ply of socks. Secondly they sell lotions to control the sweat (get from your prosthetist) but I use certain dri which is a clinical antiperspirant I can find at most drug stores. I put it on my stump in the evening and then wash my leg in the morning before putting on my leg. It takes a week or so of using every night and then you can decrease to 3 times a week or whatever frequency works. Having said that there are times when you just have to take everything off, dry the liner and your stump and put everything back on. It is important to keep your skin as dry as possible to avoid irritation, skin breakdown and /or blisters. If you've tried all that you may be allergic or sensitive to whatever your liner is made of. If that ends up being the case your prosthetist can get you different liners - not all use the same material on the inside.
  16. I am a recent below the knee amputi, Jan 1 this year, as my stub has sruck i have had to add socks and half socks to make my prothstes manageable. I am on my leg 8 hors a day and due to the heat and sweat my leg has become irritated to the point that its pianful. If anyone has any recomendations to solve this problem it would be greatly appreciated.
  17. Hi Everyone It's been a while since I have posted, but I am hoping that someone maybe able to help and advise me. I became an amputee 12 years ago and have always suffered with phantom limb pain, and in the early days I would experience an electric shock type spasm approximately twice a year. Over the years this has increased and I am now suffering on average once a month. It is now so bad, that even with tramadol, I can be screaming for days. The only relief I get is when I punch my stump, as this seems to distribute the pain, so it isn't so intense. I am literally at my wits end, because to be honest I would pretty much would try anything, at this point. I know I'm not alone in this pain, but am willing to try any suggestions. Thanks in advance Lisa
  18. CaptainKB


    Hey, I have not been here in years but thought I would drop in. I have had a revision surgery, two denervation procedures and tried numerous meds for my nerve pain caused by neuromas with som RCPS thrown in for good measure. I had the Neurvos Medical Device implanted in March as part of a trial. I figured what do I have to lose, I tried pretty much everything else so I signed up at one of the many participating hospitals in the U.S. and I am now on the therapeutic frequency that literally blocks the pain signal just above the problem area in my residual limb. So I never receive the pain signals in my brain. And no, it's not the same as the type that is implanted in your spinal column, this is a lead that is wrapped around the peripheral nerve. It is much like it though as in the battery/device that is in my belly that needs charging every few days. Weather patterns with high electricity values used to screw my day/days but now I do not even flinch. The first pain-free days since the day before my limb loss, almost 10 years ago. Cheers! Captain KB
  19. allen-uk

    Distal cups

    Hello Kate. Yes, I'm at Stanmore (Mark C). I have a drawer full of breast enhancers! The best I found were 'unbra' (tinyurl link below). Ebay, cheap, good sticky surface that stays sticky. No use at all for my problem, as it happens... The other tinyurl is for the Ossur 'thick' distal cup - Mark got me several, as the ones in my size were far too big once we'd cut off the top part which was too much with a liner. Photo attached of one on my stump. This DID work, at least in terms of protecting the hole in my stump, but watch it if you do wear one, your hip/pelvic bones will complain, as your gait will be a bit 'rubbery' while you're wearing one. Another thing I've been using for many years is gels ('Skin-on-skin' - see third tinyurl) - they are thin and last a day or so (I use 2 as a pad) - but they do mimic the missing bulk of your stump. They are pricey (about 75p each), and you could probably get them on prescription (I don't bother as I don't like going to my GP...) Hope this lot gives you some clues. Best wishes, Allen. Links: https://tinyurl.com/ybe3ffds https://tinyurl.com/yatlsfo4 https://tinyurl.com/y9atrhsb
  20. Scotskate

    Distal cups

    Allen, Hello again - I think we both attend Stanmore. Anyway, regarding the distal cup - without getting personal, I have found that using 'chicken fillet enhancers' (ask the wife!!) does the trick. Some are thick and need to be cut down but they are found on Amazon and they are very useful in protecting the stump. I'm looking for an inexpensive gel sleeve as I nearly fainted when I saw the cost of buying them. Good luck with your search.
  21. I have just tried out the gel suspension sleeve and what a revelation! BUT, like everything, it's not a perfect system. Firstly, it is very difficult to get on and off for the 'elders' in the forum and secondly THE COST TO BUY ONE IS RIDICULOUS! I have been quoted £80-£120 for one excl.VAT. Why is this so high for a piece of gel filled rubber??? Any suggestions as to an alterative . My Limb Fitting Centre will only supply one due to cut backs. Also any who uses this system- how long does the sleeve last?? Help please - anything to make an old lady's life easier to manage. Would a zip up compression stocking do as an alternative? Someone must come up with a bright idea.
  22. stevie61

    Ottobock Genium X3

    A good socket fit is more important than the choice of knee even for an AKA....
  23. stevie61

    New amputee with dreaded phantoms

    Completely normal for sensations to be all over the place.... at your stage I was in pain all the time no matter what ....
  24. allen-uk

    Distal cups

    My prosthetist has given me a couple of distal cups over the years (thinnish, worn on the bottom of the BKA stump to help cushion between stump and socket). Recently, I developed a sore on the 'point' of the stump, and needed extra padding. He couldn't provide anything, until I found an Ossur 8mm thick distal cup - far too thick, so I had to cut it down to 'cup' size to get in on at all under my liner. It works, to the extent of shielding my sore bit from getting too much rubbing, but I could do with a 4 or 5 mm thick version instead. Googling doesn't throw anything up. Anyone got any ideas for sourcing such a thing? Ta. Allen.
  25. allen-uk

    Half socks

    Hello. Does anyone sell purpose-made HALF-socks? Like most people, I've always got by cutting full socks in half, but they're always fraying, never quite right, always inclined to ruck up round the back when you put a proper sock on over them, etc., etc. My prosthetist at Stanmore says he's seen such things, but they (Blatchfords/NHS) don't supply them. Any sources (or alternative methods)? Ta. Allen, London.
  26. Hi guys and girls I'm a new amputee (15 days post amp) since day 2 I've been getting some strange phantoms, I had the idea to speak to my prosthetic guy and I got a stump shrinker. I put it on and my phantoms were bad I've taken it off again and they have calmed down. Is this normal? I'm an above the knee amputee. Many thanks Rob
  27. cherylm

    Hey, I'm Mike.

    Good advice from Gibby, again, as long as your mom is feeling up to connecting with other amputees...it can seem a little unnerving at first, but a successful and well-adjusted amputee can say and do things that, as much as you'd like to, you simply can't provide to your mom. On your end, I'd suggest that you just be supportive and let her feel whatever she's feeling. You say it's been only a few months...her emotions are going to be all over the place as she sorts out the realization that the amputation has really, truly, permanently altered the way she's going to be doing things. It's fairly common to think that, once you get your prosthesis, life automatically "goes back to normal." In reality, "normal" returns in bits and pieces over a fairly longish period of time. The older you are, the more difficult it can seem. (I was fifty...it was probably a little over a year before I felt like I was approaching "normal." Little kids, on the other hand seem to adjust so easily!) You CAN reassure her that the fact that she was in good shape prior to her problems will make the adjustments easier...which it will. And you can encourage her to keep track of her progress: it might help her to keep a diary of her accomplishments. I know, for me, I tried to be aware of how well I was able to get around various places...if I could remember that, the last time I climbed those stairs I was shaky and breathless--but this time I was not breathless and only a little unsteady--it was something I could SEE as progress and feel good about. "Normal" will return as she learns more about what her prosthesis will do for her and comes up with ways to work around what the prosthesis won't do. Is her amputation above or below her knee? Above knee can take longer to adjust to and will use more energy than a below knee prosthesis, but both can get you back to a normal life. All the best to both of you!
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