Jump to content
Heather Mills - Amputee Forum

All Activity

This stream auto-updates     

  1. Last week
  2. Earlier
  3. 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
  4. CaptainKB

    NERVE PAIN NO MORE

    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
  5. 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
  6. 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.
  7. 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.
  8. stevie61

    Ottobock Genium X3

    A good socket fit is more important than the choice of knee even for an AKA....
  9. 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 ....
  10. 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.
  11. 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.
  12. 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
  13. 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!
  14. Sorry I can't offer any advice as I drive with my left foot vs. hand controls - have done so for 35 years.
  15. Gibby

    Ottobock Genium X3

    I'm quite happy with mine. It could be quite useless if you don't have a properly fitted socket.
  16. Gibby

    Hey, I'm Mike.

    I think it would be helpful if you can find an amputee peer visitor program so she could meet someone like herself who has adjusted successfully to being an amputee. I'm 60 and have been an above knee amputee since I was 26. I had my amputation due to cancer and was at a cancer hospital where I had the opportunity to meet other amputees like me. It was very inspiring and motivated me to do well because I could see what was possible. It is different though to go through this when you're older. However meeting another amputee would be good I think as long as she is interested in doing so.
  17. Mikeyc1984

    Hey, I'm Mike.

    Hey, I'm Mike. My mom had a right leg amputation a few months ago, she had a severe blood clot in her aorta that sent pieces to her left kidney(but it's doing well), and several small clots to her right leg. After 4 surgeries, and a lung disease that caused her to be on a ventilator for a while, she's home, back to work part time, and just beginning to walk with a prosthetic. I should have utilized this forum earlier, but she was doing very well with her recovery for a while. She seems to have hit a roadblock though. Physically, she's progressing well. Mentally, she's taken a strong turn downward. She's 61, but had been in good health before the past year. I guess I just have questions on how to deal with the mental and emotional things that she is going through. I can push wheelchairs and guide her when she's learning to walk again, and all that. But I'm clueless on how to motivate her mentally. Thanks for your time.
  18. cherylm

    New to the forum and new to life with one hand

    Hi, BethMarie - I'm actually not sure if I'm going yet. It would probably be a good idea, as I've been through a major revision surgery (just over a year ago) and we're still working out tweaks on my leg...talking to some other amps and providers could be helpful. But I've also been caught up in planning and arranging three (yes, three) milestone family birthdays in the last six months, so I've been waiting on my taxes to see what my finances look like before registering for the conference. Are you set for registration and room now? I'd love to room with you again if I can go! My tax stuff has all arrived and I'm planing on trying to get them filed sometime this week. I'll PM you and let you know ASAP if I'm going to be there. Okay, Kevin, sorry about the "kidnapping"...you can have your thread back now! We were talking about the Amputee Coalition educational conference, which is happening in Tucson, AZ this summer. It's generally a great experience, if you're interested!
  19. BethMarie

    New to the forum and new to life with one hand

    Cheryl, Are you going to meeting in July? Love to room with you.
  20. BethMarie

    New to the forum and new to life with one hand

    Hi, I am not an arm amputee, but to me sounds like you are adjusting well--Congratulations!!!!
  21. cherylm

    New to the forum and new to life with one hand

    Hi, Kevin...welcome to our odd little world, where you can rest assured that your reactions and feelings are completely normal. Now I'm a leg amputee, so I hope you get some responses from upper extremity amps, just because they'll have more useful tips for you. But until then....... First of all, there is NO reason for you to wear a strictly cosmetic prosthetic hand, unless YOU feel that it would be convenient in a specific situation. You're being quite logical in realizing that having a stump that can feel things beats a plastic hand that just "hangs there." the majority of the arm amps I know either don't wear a prosthesis at all or wear a truly functional prosthetic with either biomechanical hand or hook (or interchangeable "tools") when they need to do something specific. While there has been a lot of progress in arm prosthetics, I understand that they can still be quite heavy to wear and many folks wear them only when truly needed. So just BE YOURSELF...OK? It sounds like you're beginning to get the right idea about things like business greetings....yeah, just thrust out your left hand and get on with life. Believe it or not, most folks will appreciate you giving them a visual "cue" to respond to...you're right when you say that they just don't now how to proceed, and you taking the initiative will put them at ease. Go for it and keep at it until it feels truly natural to you. Your missing right hand is just as valid as an amputee who is missing "more" then you. You're entitled to feel frustrated, to celebrate new accomplishments, and to just want to "talk" with other folks who understand the ins and outs of being an amputee. So again, you''re perfectly normal on that front. You're "one of us": an average, everyday person who's learning to live an average life in unusual circumstances. Don't expect to have a "deadline" on learning to be the "perfect" amputee...you're likely to keep encountering periodic challenges that need new solutions at many points in your life. The ""challenges" just become less frequent as you start building your set of ways to deal with them. So take a deep breath, take a look at the way your daughter just takes her situation as it comes, and realize that this is truly the only option out there...just LIVE. The rest will come with time.
  22. Hello everyone, I've been reluctant to post because sharing can be scary, but my wife has finally convinced me I need to reach out and talk with other amputees. It's been almost a year and I'm still suffering from anxiety, so any insight or thoughts and ideas are appreciated. Who knows maybe I can even return the favor to someone someday! First a little bit about me. I'm a 36 year old husband and father to two amazing little girls, Adrie who is 4 and Darby who is 7. Darby is partially deaf and was born with spina bifida. But besides her hearing aids and wheelchair, she's a loving and energetic little spitfire who goes to mainstream elementary and is performing at the top of her class, against all of her doctors predictions. I bring this up becuase it would seem that working so hard to raise a daughter with a disability would have helped me cope more with the loss of my hand, but it really hasnt as much as I wish it did. My amputation is not even from an interesting story but rather a small cut I got on my hand working in the yard. A month of fighting an infection and multiple failed attempts to save it and my right hand was amputated on July 2 of last year. For those of you here who know the doctor lingo it is called a wrist disarticulation and I still have the bone at the end of my wrist. They couldn't safely keep enough of my palm to preserve the hand bending function but they told me doing a wrist disarc would provide a much better stump that wouldn't hurt as much and be more durable to use without without a prosthetic than higher up my arm. I had to have some minor skin stretching and a graft to make it work but I think I'm glad they did it. Well I know every case is different and that I shouldn't judge myself against other people, but it feels like I've made slower than normal progress on geting back to a new normal in life, even though my wife and family think I'm doing great. Part of my reservation posting here is that there are others who don't have any arms or legs at all and I feel like just missing a hand is such are little problem of what could be much bigger, so I hope I don't offend anyone. What is funny is I've met both leg and a arm amputees in a support group I went to for a bit and a lot of people missing arms wished it was their leg, and a lot of people missing a leg wished it was an arm. I wish it was neither! But i guess it's all persective. My right hand was my dominant hand so I'm learning to do new things everyday. I'm finally getting OK at writing to where you can actually read it haha. The one thing that has suprised me is that I have actually gotten fairly good at typing which has been good for my job. I found using the small bump of my wrist bone on the sides of my stump works well for hitting a key. I am a big tinkerer and handyman so I have had a lot of frustrating days and choice words for trying to learn how to use tools again. I do feel blessed that Darby has enough hearing ability combine with lip reading skills that she doesn't use sign language, although she an we were all taught it as until recently her speaking was pretty hard to understand unless you knew her, so she has signed before in school and its a good backup for her in the future. Her hearing was just a congenital defect so we are told it shouldn't get worse until she is elderly just like everyone else. Hopefully by then if I'm still around she will understand why I stink at it ; ) I went back to work after beingnoff for about 3 months. I am an engineer who also does sales calls and meetings with customers so this has been one of the biggest anxiety issues for me. Anyone in the business world will know a handshake means everyhting and is something I can no longer do. I have had a mix of weird looks and awakward moments where people don't know what to do. Ive had waves, a pat on the back, a high five and even one lady who just grabbed my arm stump and then just froze out of fear. I dont blame them as i would not know what to do either but it still makes me just want to hide from the world. One guy just went in for a left hand shake and it was great. He later told me his dad was born with one hand which explains the good greeting he had towords me. Since then I've tried to confidently make the first move to shake with my left and it's helped my anxiety some. If there is any silver lining in all of it it's that people remember me at meetings and that's good for sales call backs! The one last thing thats more of a question to you all is using a prosthetic. I was made a prosthetic hand a couple months ago but I just hate it. It's just a solid fake arm that does nothing but look like a shiny weird copy of my left arm. Depsite my selfcousious about my looks I just can't get myself to use it and I find that having the touch sensation on the end of my arm is way better and more useful than a silly extension that I can't feel through. Am I crazy? I feel like I'm getting pressure from all angles to wear it but I just don't like it. I was told because my stump is so long that I can't get an electric hand but I've since seen otherwise online. I don't know. So anyway I apologize for my ramblings. I look forward to hopefully hearing from some of you and maybe even my story will help someone else which i think would really make me feel realy good. I know life will go on and I'm still me but it's just hard to convince myself sometimes. It's funny that a 7 year old has been the biggest giver of advice to me so far but it's true. I just can't convince myself of the things I tell her! The other day I told her how proud I was of her, and she told me she was proud of me! Best feeling a father could ever imagine. Sincerely Kevin
  23. SteveAZ

    Steve from Arizona

    Well it's been more than ten years now and a revision that went poorly (MRSA and a Dr. that wouldn't accept that until it was horribly involved) about three years in. Quite a decade. I haven't posted here in probably 5-6years. Sort of got things worked out and just living life. I'm late 50's. I had been riding my mountain bike a bit but it just wasn't fun anymore with the leg. Fast forward to 2016 and a buddy let me ride his electric bicycle. Shortly after I purchased one and put >3000km on it in about 6mo's. Then I built one in Mar '17 from what I learned with the first one and have close to 5000km on it now.
  24. Ree Ree

    Questions

    What type of leg do you have, if you don’t mind my asking. I have the Biome, with vacuum suction. I have been a BKA for six years tomorrow.
  25. Ree Ree

    Questions

    Hi, My heart goes out to you. It is disheartening to think of what life use to be before your amputation, that’s why it’s best not to think of it and get out of that chair- it gives your mind space to think on your past. You gotta get on your prosthetist to make the world complete or go to someone who can- it can happen. There are other ways to be more active - look up sit down exercises on YouTube. Good luck to you!
  26. NLSimkins

    Questions

    Thank you. My prosthetic doctor called me today to make me a new socket. I am as active as I can be with an ill fitting leg. A mixture of having to use my chair and my medication has caused my weight gain. I also hate my wheel chair because I am a very independent person and was very athletic before my accident. It's been 9 years and I still get emotional not being able to do things I once regularly had done
  1. Load more activity
×