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Heather Mills - Amputee Forum

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  2. About Me I have been an amputee for 20 months. AKA and AEA, left side, luckily right handed. After 10 months of taking Lyrica and Cymbalta (I used the Fentanyl patches and Oxy too while in the Hospital), having normal Phantom Pain that “comes and goes”, my PP started to get worse. The doctors gave me higher doses, but didn’t worked as expected. Tried Oxy again, but nothing happened. Just the side effects started to really affecting me. I have tried mirror therapy, tens machine, using a shrinker, essential oils, massage, mindfulness meditation, with no success. Time is passing by, but it’s not getting better as I read. I stopped all medications because of the side effects and the phantom pain is still the same. So, I didn’t went back to taking the drugs. That’s good for me. I feel like I’m seating on my leg and foot all day and night, numb, cramped, tingling, all together. My arm feels like it’s being pressed in a wrong position and if I try to move my fingers, it’s insupportable. Sometimes I feel the stabbing, burning and the electrical shocks too. But feeling my arm and leg just wrong 24/7 makes me tired. The only thing that works a little, is distracting my mind. Reading, cooking, cleaning. Using the prosthetist leg just focusing my mind on balancing and not falling, helps, but the painful feeling it’s still there, although not so intense. I’m learning how to live with it, which is good. I’m just getting used to it. I love being alive, watching my kids grow! I’m so thankful for that, than the pain seems a good price to pay for being here. But it’s not easy. I’m still waiting that with time, it’s starting to feel better. I don’t have sensible spots on my stumps. I can touch them. Is somebody feeling the PP like me? Do you have something that worked for you , which I can try?
  3. Hello to all of you, I've been amputated for 23 years. Major amputation at three quarters of the left thigh, so clearly above the knee. This amputation was made necessary due to a devastating cancer diagnosed in 1995 as follows: Chondrosarcoma mésantichameux bi-phasic of the left knee. In spite of a very short stump, after my recovery and the numerous anti-cancer treatment sessions, I had to wear a prosthesis and start walking again. Unfortunately, the cancer continued its work and a year later I had to be operated in the small left basin to extract a large metastasis. It was a unique tumor. During this surgery, the entire anatomical structure of my small pelvis on the left side had to be sacrificed. Before the operation I insisted on a bypass if the blood vessels were affected. Unfortunately it was not done, so that I can no longer wear a prosthesis since this time since my stump has no more heat and muscle tone. Crutches and scooters are, since that time, my best friends. Then followed a thoracotomy to excise another large méthastase to the right lung. Finally we had to do another surgery to the lung for what seemed a multitude of small metastases nascent in 2002 may fortunately this was a negative result. Since then nothing else has appeared despite a tight medical follow-up. I welcome, of course, this positive evolution but as nothing is ever perfect, I inherited multiple chronic pains in the amputated leg but also at the level of the stump itself. I am strongly medicated for this purpose but the pains, often intense are still there. I even think they increase over time. Note that they were quite bearable before the intervention in the small basin. For all these years during which I am amputated, I ask myself the following question: the fact that I was not bypassed during this intervention in the groin on the side of my amputation can be partly responsible for these intense pains?or I would have had the same with bypass. I have asked this question to several doctors since but none have given me a frank answer. You will tell me that knowing will not change my situation but I am obsessed with this question, especially in the severe crises that require me to isolate myself. As my wife says, it sounds like real torture sessions. To close the situation, my organic system does not tolerate any opiates even its derivatives. My text looks a little like a complaint. If that's the case, I m sorry. But if someone among you lived like this, what do you think?


  5. allen-uk

    Half socks

    Hello Kate, and thank you. The only ones I can find there are BOTTOM half socks - the sort I was after were the TOP half, i.e. the ones you position just below your knee. But I will pursue it. Allen.
  6. Kathycmc

    Half socks

    They sell half socks on amputeestore.com. Find them under prosthetic textiles. Kate
  7. Ben

    Hi, I'm Ben......

    Hi All, I'm not sure how much this will help me, so consequently, I'm unsure how much help I'll be in return, But I think I need to reach out a little. My name is Ben, I just turned 50 last October. On April 6th 2002 at 13:40, I was sat astride my Kawasaki 650, that I was driving home after buying it around 13:00 feeling really elated. I waited in a line of stationary traffic right behind my girlfriends car, as she had dropped me off to buy it. To my left was a small road leading to a park, I was watching the traffic flowing freely on my right, and saw a woman talking to her passenger with her indicators blinking, showing that she was wanting to turn to her right. I assumed she could see me, before I could blink, I felt the impact. my left foot was on the road holding the bike up as I waited. I heard the noise and saw my leg pointing the wrong way. I felt a hard push as the lady, in panic I assume, put her foot on the accelerator instead of the brake. The right leg was a mess. As I zoned in and out laying in the road. I could hear crying, shouting and screaming. the next two weeks are completely missing. I am trying to keep this short but I need to explain the nightmare. If its too long you can skip to the last three lines. My right leg was broken in multiple places, ditto the foot and ankle. it was nailed and had two halo x-fix holding the bones in line. I'd had compartmental syndrome in the first few days, so had a large open wound. The left leg was supposed to be a straight forward compound fracture that ended up having pieces of my hip inserted, it got infected. So the piece was removed. Large dose of antibiotics and a piece from the other hip was removed and tried again. failed again! this time it was MRSA. The thing would heal partially then break down again and again. I had really strong antibiotics again and again with no success. Two years of enduring terrible nerve pains, it was decided removal of the leg was best. they unwrapped it after 7 days to see...…. the infection was still there. I was devastated, I felt so ill. I had further surgeries to try to "cure" it. All this time the bone pieces had been shifting in the right leg, enough to say it would need the nail removing and bones realigned. Eventually I sought out a plastic surgeon based in Oxford, the plan was to take a piece from my lateral muscle on my back, connect it so blood flowed freely and increasing my hopes of getting a prosthetic leg. At the same time the nail removal and realignment would take place. I came round and was mentally feeling hopeful. The surgeons came to see me telling me first that the nail couldn't be removed as the head on one of the bolts holding it had sheared. meaning I couldn't weight bear on it. the stump operation seemed ok at first. Then the piece of muscle was losing its blood supply due to another infection. The upshot of this has left me with a pretty useless right leg, an ugly stump and confined to a wheelchair. I had dark times, as I am sure most of you have. I tried to live as normal as possible, but I was a six foot 1 warehouse manager and a kickboxer that rode mountain bikes on incredible tracks and terrain. Obviously my job went as I was in hospital for just over 7 months initially. They were as good as they could be about it, and I completely understand their position. My hobbies were now completely gone, so lost touch with a lot of friends over time, as the months passed. My partner and her two sons were great I sort of house husbanded, as I got some compensation my brother talked me into a great idea for a business, that I sank a lot into it, but it failed 4 years later, with a tax bill to follow. The boys grew and the eldest now lives in Surrey and has a great job so I'm so proud of him. The youngest is at Liverpool university and is studying Mathematics, and theoretical Physics. Two clever lads, so I did a good job as a stepdad. Then 3 years ago out of the blue my partner said she didn't love me anymore and was at least honest enough to say the wheelchair was a huge deciding factor. So I feel totally emasculated, very very low at times again and feel almost unlovable. I had an infection in the leg recently that I had to have a "midline cannula", I believe its called and had worked out how I could "medicate myself" to end it all. I've re-written this whole thing several times now and think I'm going to post it as is. I'm still projecting confident, happy Ben. I tried internet dating, the ladies that did reply didn't read my full profile and contact either stopped or some were honest enough to say "thanks but..." as soon as they heard wheelchair, Its only below my knees that's useless! I feel so lonely inside, I haven't had even a hug for over a year. I'm not saying woe is me, its just I have always been a physical person. I miss contact, even just holding somebody or being held. Jeez! I really sound pathetic don't I! Well this is me, as I said I don't know if this will help me or any of you, but I'm just reaching out I guess.
  8. Donj307


    Hey all... I recently had a through knee amputation in October last year. I'd been on crutches for the last 16 years before getting to the amputation. I have an existing nerve condition complex regional pain syndrome. So I had the op and I'm struggling a little if I'm honest phantom limb pain is a problem. And me mentally getting my head around all this is hard and I feel as much as I have amazing friends and family supporting me. I don't feel like there getting it. Any advice... Information or just general guidance is Appreciated =)
  9. allen-uk

    Half socks

    Thanks monopod, all interesting and useful. There are loads of solutions which the NHS (in my case Blatchfords-NHS) keep private, I am sure. Ok, they have limited funds, and the NHS won't pay for everything, but I'm getting fed up over the years with being old and unimportant, and therefore pushed to the bottom of each pile! Sounds as if you know the score. For example, I've had an open ulcer on the point of my stump for getting on for a year, with minimal interest or support from Stanmore, while to me it is THE most important part of my physical life - if it wasn't so sore, I could 'operate' much better. Anyway, rant over for me too. My old mate Ted used to say "Don't get old, Al," and boy was he right. Allen
  10. Yvon

    Performing crutches

    Hello I am a new member of your group. Although I am amputated above my knee for 23 years, unfortunately, additional surgeries after my amputation deprive me of all prostheses. I am therefore only travelling in crutches or scooters. I tried about all the classic markings crutches up to now. I'm looking now for more expensive crutches, but probably more comfortable and more reliable. (I change the classic one about every two monts ). Is there anyone among you who would have useful suggestions for making me the best marks? I am a active male measuring 5 feet 10 inches and weighing about 190 pounds.
  11. monopod

    Half socks

    Hello, I'm new back here with 26 years hard experience. Wish I had any guidance on many of the problems that I've faced. I had your dilemma when my ALAC informed me that they "supplied no socks with holes in." I've been on Iceross system many years, and had to use my modest inventiveness to get me round the "can't supply it " problems. I have a thin nylon sheath which apparently isn't Kosher for my system. I took an idea from ladies' "hold-ups" with the band of silicone around the top which keeps them from turning into "Nora Batties". ( See Last of the Summer Wine.) I appropriated a no longer needed foam liner from my old leg system. ..... this may or may not be within your experience, but there is a lot of use of silicone rubber in the prosthetics trade. I put my stocking on the liner with the inside facing out, which was the side that I wanted to render "non-slip." Then took my tube of silicone-rubber bathroom sealer, either white or clear is OK...... then I massaged it well into the textile , ( in your case terry fabric or some stretchy cotton weave ?) ... forming a band of about 25 to 35 mm width in the fabric. The idea is to make it stretch enough to hold up, but not too tight. When it's set, you should have a non-fraying , hold up sock which will have enough inherent tackiness to grip the surface which it is put on. For my Iceross I have to do similar with the hole which I have to cut in the bottom for the retaining-pin system. This approach has met with some raised eyebrows from various prosthetists, some suggest that I should patent it, but the fact is that the "System" can, or will not supply widgets that can make an amps life more tolerable. This approach is symptomatic of how I view Mohammad and The mountain. Okay, I'll do the bloody thing myself. At my last but one visit to the Limb Centre, I met an arm amputee who had designed and made his own functioning prosthetic hand . The "system" couldn't supply one, so he had the same approach as me. This situation is deplorable, but life is for living Innit ? The politicians proudly announce that more funds are being made available for the Servicemen who suffer the IED's blowing them to bits. What they don't say is that they're robbing the money from the older people, and providing less than the gear we need .... such as water-activity legs, and spare legs. Who needs two ? well my new leg fell to bits half a mile from home with my dogs in the middle of a field. My "shower" leg was constructed from various bits saved from the dustbin at the ALAC. That's my rant finished. Hope it may do you some good.
  12. MaggieH

    Ertl in the uk

    Thanks, Johnny - I've already visited the site, but there's nothing about UK surgeons. I've sent a query in, hopefully I'll get a reply.
  13. JohnnyV

    Ertl in the uk

    Hello Maggie, Here is the website. Should give you everything you need to get you heading in the right direction. http://www.ertlreconstruction.com/ Best wishes on your journey ahead !!
  14. Does anyone know who does Ertl amputation/reconstruction in the UK? Preferably in the Midlands, but anywhere is ok. Thanks, Maggie.
  15. Its been a while since Ive been here. To get to the point I slipped and fell badly on my prosthetic. The fall resulted in a crushed and sheared tibia plateau fracture. I had to have surgery which required two bone graphs, a bone cement repair on the 7cm vertical fracture and a complete repair of the meniscus. Also plates and screws were required. I wont be able to weight bare for 4 months. Have any here dealt with such as this? I am worried about how I may or not healmor walk. Thank You Derrick
  16. lisa

    Neuromas are a pain!

    Hi Sue I know you had your surgery 6 years ago, but I wondered whether this surgery helped you with your pain? Lisa
  17. lisa

    Do I have a neuroma?

    Thank you everyone for responding. For some reason I haven't received any notifications, so didn't realise anyone had replied. I definitely have a neuroma and from what the Doctor has said, it's a big one. Stupid thing is, if you read my posts on here, I have thought this for a while and I did go to my GP and she brushed off my concerns and prescribed tramadol. I am being referred to a specialist and will definitely base my decision on everything but I am going to go through all the posts on here first.
  18. lisa

    Electric Shock Type Spasm

    Hi Kathy I didn't realise anyone had responded. Anyway I have had my MRI scan results today and it is a neuroma. I am just waiting to see a specialist, but if surgery is an option, then I will definitely have it removed. The Doctor seems to think it is 13cm's long, but even she thought that must be wrong.
  19. 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 

  20. 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
  21. 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.
  22. 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.
  23. 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,
  24. 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
  25. 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!
  26. 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.
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