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  1. Yesterday
  2. Keith

    Decisions Decisions

    Beth Marie, I must admit I am a little disappointed by the lack of response here, from people other than you. Thank you for your input. I guess I will check out the coalition site and see if the members there are any more responsive.
  3. Last week
  4. Keith

    Decisions Decisions

    Thank you for the reply, BethMarie. I live in Newport News, Va., US. I have an appointment with my surgeon in a month. I might try a different type of brace for one last effort, but I know it is only temporary and both my surgeon and the PAs at the practice have told me repeatedly that as things sit there is not going to be a final fixes everything operation. They say I can look forward to multiple more surgeries over the years. Which is why I'm thinking about amputation as an option. Every time I have an operation, I go through another two weeks of elevation, six weeks of non weight bearing and months of PT. Then there's the added time it takes past therapy before it truly reaches the optimal level of use. I keep thinking, wouldn't it be better to just get it cut off and (hopefully) be done with it? Not to mention, they can't possibly fix every joint in my foot that is going bad or going to go bad, so no matter what they do, I will have fain of some sort in the foot and ankle for the rest of my life. I want to spend the day with my grandchildren at the amusement park without having to just find someplace to sit and watch them go to rides and run around without me, because I can't take the pain of walking behind them or can't keep up. I want to be able to go to the store with my wife without having to either find an electric cart to drive or cut shopping short because the hard floors hurt too much to take for long. I even want to be able to walk for exercise and maybe be able to go jogging again, so it's not so hard to be able to get my weight down. Sorry for going on so much. I just get frustrated and don't want to make my wife listen to it. I know she doesn't understand, even though she tries to be supportive of what I go through.
  5. BethMarie

    Decisions Decisions

    Hi Keith, i chose to have RBK amp about 10 years. I went through many operation—far less than you! I was tired of the pain and mainly how it had impacted my life—I was very active before my accident—a woman hit my car because she was distracted. When I made the decision I knew I wanted to go back to my life. It took me about a year of rehab and I got discouraged, but I did get back to what I wanted to do in a different way for example I lead trips to Viet Nam for small groups—have done 6 since my amputation. Only you can decided. You did not say where you live, but you might want to check out the Amputation Coalition in the US. I live in Canada and am an active participant feeling very welcome. They have a very wonderful annual conference that provides a lots of education. Blessings, Beth Marie
  6. Earlier
  7. Keith

    Decisions Decisions

    Hi, everyone. I found this site while researching elective BKA for foot and ankle issues. I have been looking into the good, the bad and the ugly concerning such a decision and I am no closer to coming to a conclusion than when I started this process. I guess this is the part where I should explain why I'm at this junction. In 1977 I tore the ligaments in my left ankle while playing street basketball in my senior year of high school. Not a bad injury. Back in those days, it equated to a cast for a couple months, some minimal PT and back at life. Around 1984 I reinjured the same ankle during training in H2H combat while on active duty Navy. I was spinning around on my left foot, it caught on a protrusion on the ground and the foot stopped turning while the rest of my body kept going. The result was the foot being dislocated and spun around until the fibula fractured and obviously some tendons and ligaments were ill treated in the process. As typical for military injuries in the era, 3 months of a cast, no PT and orders to get ready for the physical fitness test coming up were the prescription. For about 9 years. I was okay. Around 1993 I stared having problems with the ankle locking up and having pain. Still being on active duty, I went to medical and was told I had arthritis and bone spurs (osteophytes) growing in the joint. In 1995 I had surgery to remove the bone spurs and clean out the joint. In 2000 I was again having problems and had a repeat of the same type of surgery. This one lasted for approximately 9 years, at which time I was again having issues, only worse than before. By this time I was retired from the Navy and sought care through a civilian who repeated the previous procedures and also opened other areas to remove scar tissue from tendons and ligaments. Three years later, I was in again. This time cleaning up the joint and removing bone spurs not just in the ankle, but other joints as well. Two years later, more of the same. with a mention that the next time would probably entail an ankle replacement. Three and a half years ago, I sought out the care of a very well respected ankle/foot guy and was informed that he "could replace the ankle", but I wouldn't be very happy with him if he did because I now have so many other issues I would still be in pain. So he again cleaned the ankle and removed bone spurs from it and other joints, cleaned up more scar tissue from ligaments and tendons, fused the subtalar joint, and performed a Strayer procedure to ease the tension on the Achilles tendon. My foot and ankle were cut open 5 different places (plus the scope incisions in some places). I now am on my 2nd type of custom brace and am almost constantly in pain. I can't even mow my lawn anymore, because it results in me spending the next day icing and elevating my foot. I can't do things with my grandkids, because I can't stand the pain to do so. I can't take NSAIDs for pain due to cardiac stents and use only prescription strength NSAID Cream locally with Tylenol orally and yet I am still in too much pain to lead anywhere near an active life, which lead to being overweight. At my son's wedding I danced one dance with my wife and paid the price the rest of the night and the next day. At my last appointment I was told I now probably need a fusion of the transverse tarsal joint, more cleaning of other joints and possibly either an ankle replacement or fusion. Was also told that the ankle will need either of those at another time if it's not done now. The conversation ended with being told that I can look forward to a lifetime of periodic surgeries, as no one will ever fix the issues permanently. Not long ago my son ( a soldier) asked me if I had considered amputation, to enable me to live an active, pain free life again. He told me that with the advances in Prosthesis, people have a much better quality of life and he even knows a soldier that is still on active duty, jumping out of planes and being deployed without one leg. I kind of blew off the idea until I was getting fitted for my new brace and the orthotic specialist mentioned it again. He said he had several patients that had made the choice and not one that regretted it. As to be predicted, when I mention it at home my wife gives me the stink eye and poops all over the idea. My daughter quotes statistics about average longevity of amputees and some friends think I'm crazy. I haven't yet broached the subject with my surgeon, but am thinking about doing so at my next appointment in a month. This is no easy decision. I know I don't have to tell anyone here that. I am open to inputs and considerations to take in this process. Those of you that have made such a decision (or chose other) please provide input about where you were , where you are now and how you now feel about your choice. Thank you in advance.
  8. Pros of been a double amputee No sweaty feet No blisters No need to change tights Can take legs off when had enough Excuse not to wash up Can you think of anymore?
  9. Janey50

    Prosthetic issues

    I am having issues with prosthetics causing pain I can hardly stand or walk at times I was given gel socks which are difficult to put on and are sweaty I'm a double amputee
  10. Aims, since it has been two years since your last update, would you please provide information on how you are doing now? Are you still satisfied with your choice for another surgery? Have you had to revisit the option to amputate? I am 60 years old. In 1984 I broke my left ankle doing military training. In those days, military medicine for a broken ankle was, cast it for a few months, take off the cast and start getting ready to run your fitness test. The method of the fracture was by dislocation of the ankle and rotation until the fibula cracked. Around 93 I started having problems with it locking up. In 95 I had my first surgery to clean up the joint and remove osteophytes. In 2000 I had a repeat of the same plus removal of scar tissue from ligaments and tendons. Since then I’ve had three more surgeries to clean the ankle and other joints in my foot that have now developed arthritis. The last one was three years ago. They fused the subtler joint, cleaned out the ankle, cleaned out the joint at the base of the big toe, and the one at the front of the talus and performed a strayer procedure to add length to the Achilles’ tendon. Now they are talking about fusing the front of the talus, cleaning other joints and the ankle, and possible replacement or fusion of the ankle. They say there will be no actual fix to it all. Just a series of periodic surgeries. I’m considering asking for BKA instead.
  11. Donj307

    Newbie

    Yeah I live in Leeds. I'm heavier too. I've nearly been on my feet 20 years, theres only souch you can do on crutches. Ppl are so quick to judge, f..k em. Although we high know that's easier said than done. I've not had the hero comments or that I'm an inspiration. But like you, that's not really what we want we just eant to be normal and our self's. I'm 34. Single, no kids. I think also now the problem (leg) has been chopped off, there's nothing to see now. There's no huge swollen, deformed leg that I'm dragging around. So its sort of out of sight out of mind. I'm sire they would completely disagree If they read this, and I mean nothing by it, its just how it feels sometimes. I've been around 8 weeks with no prosthetic. And the fitting last week was no good either so that's another 3 weeks qmd even then, its a new leg either a new knee so I'm not overly joyed lol. I also got blood clots after the cage surgery so that set me back to they took a long while to get over. So what happened to you. If it's cool to ask.
  12. Angelina

    Newbie

    Donna, you poor poor thing, things must have been so difficult for you especially as a child going through so much! I am the same as you I dont know whether it was the right thing to do particularly when I'm in so much pain! We seem to have very similar things going on in life...I too dont go out, that started after the sepsis when I too was dragging a useless leg around and has only gotten worse since my amputation, in hate the way people look at me and get so angry at their stupid comments. My favourite one of all is the judgey do you have diabetes...because I'm bigger (I've put so much weight on since the sepsis!) I must have had diabetes that I clearly didnt manage properly leading to the leg to come off! and the looking like I've got 3 heads or something 😠 Yep I'm offay with the wearing of a mask day in day out for other people...think positive Angela you've still got your life, things could be worse Grrrr what the hell do they know! When I first started using my leg I was getting messages which were lovely to begin with but then every time I looked at my phone someone else would be telling me I was a hero, i was an inspiration people were soooooo proud of me etc... after a while I just wanted to shout at everybody I dont want to be a hero or an inspiration I just want to be me! Friends and family are so well meaning but they cant ever understand unless they have been through what we have, god the CRPS is so difficult for people to understand let alone pp or any of the other delights that go along with amputation! You certainly weren't rambling lovely and even if you were ramble away😊 I am a massive rambler too lol Did you say you were from the UK if so where abouts, I'm from southampton...I'm guessing that Alexandra is from the US as she seems to be around at a different time to us! Angela xxxx
  13. Donj307

    Newbie

    I broke my leg when I was 10 I had a bone cyst. Basically after that break I never walked properly and complained of pain. Looking back now we think it was set wrong. And the deformity worsened following that. Fast forward 6 years, I was 16 and the doctor advised me to have a right tibial osteotomy to correct the deformity I could have this done when I had stopped growing. So with much thought and conversation with my parents we decided that was the way to go. So we did. I had the osteotomy and the 18th of January 2002. As soon as I awoke from surgery I was screaming the pain was horrendous and I couldn't move my foot or ankle at all. The nurse reassured me its fine your just coming round everything is fine. Then without going into to much detail the next 5 days were horrendous terrible pain to the point if someone touched the bed I was screaming. They kept coming and saying we think its compartment syndrome.... We had no idea what this was, never heard of it. They would tell the main surgeon he would come and say no its not that.. She has a low pain tolerance. This happened a couple of times. Till eventually on the Wednesday night my blood work had come back. My urone was black, And just after visiting time had finished a swarm of doctors came and told me I had compartment syndrome and needed to go to surgery now. I freaked. They said I'd have tubes here there and everywhere, I'd be in high dependency when the surgery was done. I was like what the hell is going on. Luckily my parents got back to hospital. In time to see me off to theatre. So, compartment syndrome is a limb threatening life threatening condition, basically the muscles swell and have no way to release as your leg is encasing those muscles. Imagine blowing a balloon up in a mug. When the balloon(muscle) get to the edge there's no where else to go so the muscles die. And the toxins from them go round your body and shut down your organs. So 3 surgery's later. My muscles had died so they where removed. And I was left disabled. Dropped foot, no movemebt in ankle foot and toes.It was weird hard to understand hard to progress in life Since that surgery I was on crutches the rest of my life and wheelchair for distance. So fast forward to 30 years old I'd been diagnosed with crps. About 10 years earlier. Bit no one new about it. So its been hard to explain to ppl as generally it has a mind of its own. My leg was also deformed the bone despite the osteotomy was bent literally like a banana. So they wanted to do another osteotomy but with an external cage. Understandable my faith in doctors isn't great and going under the knife again casued many problems mentally. But I did it I wanted a life. A good life. A less painful life. Woke up from surgery.... Screaming. The crps was completely pissed off with these new injuries. And kicked off. And the whole 6onths that thing was on I was not in a good way. They had to take it off surgically coz it was too painful. And since then I've been inmy house. I don't really go out any more. I think that that cage broke something inside of me. Sounds really dramatic but it did. I put up with this s..t allll my life. Try and fix the mistakes and the leg punishes me more. So the last and final thing.... Amputation. To actually have to agree to let someone chop your leg off is extremely hard, my head was a shed. The crps would not go away and they told me that b4 the surgery. It wasn't something we decided on a whim its been mentioned several times over the years. So long story short. I did it. And its the hardest thing I've ever done. I don't know if it was right. Although my existing leg was useless. I was just dragging it about., but this has been unreal. Amd I'm only 7 months in Phantom pain... Is hurrendoes. Crps is horrendous. And you have to greet visitors with a smile on your face. Coz none of em really have a clue what's going on lol As much as I love everyone and they are so supportive there's bits they just can't help with coz they haven't experienced this. Sorry I'm rambling I've tried to he brief its hard to put 20 years in a few paragraphs Donna
  14. Angelina

    Newbie

    Oh ladies I am so so glad that I have found people that can totally get what I'm feeling but, im so so sorry that you are going through it too...I wouldn't wish this crap on anyone! I spent 3yrs sleeping downstairs in a hospital bed and finally the past few months the council have changed my bathroom (which sounds exactly like yours Donna) into a wet room and installed a stair lift! Sounds wonderful doesn't it...was supposed to give me my independence back, no one put any thought into how I was going to move around upstairs so during the day once hubby has gone to work I'm stuck downstairs using a commode with a carer coming in to make me lunch. Then at 6pm the carer comes back for me to have my bedtime routine done (42yrs old and going to bed at 6pm...so rock and roll!) So she takes me for a shower moving me around as best she can on the commode then I have to shuffle from outside the bedroom to get into the bedroom because they cant/wont widen the doorway to my room. Then that's me, stuck in the bedroom back to using the commode...I've been told I'm lucky and I think maybe I am because I know there are loads of people that dont even have this option but, I feel heartbroken at being pushed from pillar to post like a piece of furniture. If I'm not crying because of the pp/crps im crying because of the whole situation. Alex, I'm so sorry that you had such an awful accident, I cant even imagine how things have been for you. My story isnt as ferocious, I came to lose my leg after a planned surgery. The surgery went well until the wound broke down, I developed a 4inch by 4inch open wound that was mismanaged by everyone involved in its care. Eventually my surgeons registra decided that to keep the original surgery from failing i need to go back to surgery for what they call a manual manipulation but during this he decided he would close the wound....the wound had infection tracking up my leg and also down the leg so 3 days later I collapsed with sepsis. I spent 2 weeks in intensive care, the first of which I had 8 surgeries to clean the inection, I lost the surrounding muscle structure to my knee and they took alot of bone breaking my femur and tibia. They talked about taking my leg then but they felt that it was best they didnt at the time. This was my first introduction to CRPS and the hell it bought with it! I had to wear a metal brace to stop my knee collapsing 24/7 which made me delirious with pain so I begged and begged my surgeon to take the leg and finally after a year of begging here we are...1 leg lighter! Donna, how did you come to have your surgery? Is your CRPS limited to your leg or has it spread? I'm so pleased to have met you girls, I saw both of your posts were a while ago but have been so lonely and craved someone who could understand me so I thought why not just answer! and yes Donna pp is ABSOLUTELY real...I'm not clever enough to dream up the ways in which it manifests! Mine right now is manifesting as if I'm stood in a pan of bubbling boiling water so that the 'foot' feels like it's on fire and burning and then the water is splashing up my calf 😔 I am in the UK where abouts are you ladies from? I'd love to be able to get to know you both so that we can share not only the crappy times but also the lighter times in life! 😊😊 Much love Angela xxxx
  15. Donj307

    Newbie

    I could get upstaira on my bottom your right. Bit at the moment pain and my slipped disc make that quite hard plus I don't wanna fall or bump the stump. I don't wanna go Amy further backwards if I can help it. My bathroom is very small. And I can't physically stand long enough and its too small to put in a seat I've tried b4 as before the amputation I was on crutches so showering was hard. I'm waiting to see if the council will help change the bathroom. If not I'll have to try get the money, or move. As long term I'm not sire if my house currently will work out. But we will see. Thanks for responding. I literally forgot I'd posted on here its been months. And now there's 2 of you that are in a very similar boat... Donna 🙂
  16. Alexandra

    Newbie

    Hi to both of you! Reading your posts put a smile in my face. I’m not literally laughing because I know the pain is really really real! 😉😂😢 I have tried the Silver coated socks before. Didn’t worked for me. But I’m guessing the problem with me, is my tumor messing on my PP. Even with my prosthetic leg, I have had sockets problems because of my Hormonal issues, gained weight, etc. I’m hoping to get a third socket too, one that finally can work just fine. My stump is almost too short. I prevented blisters before putting virgin wool under the affected areas, inside my liner. I don’t know if using it or the gel discs, will help to ease your pressure stump pain. But maybe worth trying. I have the SILIPOS DISTAL END PAD, GEL CUSHION and really helps me. Oh Donna, must be so hard being downstairs bounded. I have been trying to climb my stairs seated on my but. One step at a time, helping myself with my right leg and right arm holding part of my weight from the handrail. It’s hard and takes time, I’m slow. But I’m wondering if you would be able to go upstairs to take a shower or bath once a week maybe. That could feel like paradise. I remember the first time I was able to go under my shower, finally, felt soooo good. Living as an amputee is challenging to say the less. But keeping my mind looking at the positive things in my life really helps. But that’s not enough sometimes, and I have had really bad days. Thank you Angela to answer to my message. As Donna, I had forgotten about this Community, until your email showed up. Stump 👋 to both of you 😉😍
  17. Alexandra

    Phantom pain worsening over time.

    I read lately a couple of interesting articles. One in https://amputeestore.com/blogs/amputee-store-blog/new-theory-sheds-light-on-phantom-limb-pain?variation=A&_ke=eyJrbF9lbWFpbCI6ICJhY2FyaWJvbmlAaWNsb3VkLmNvbSIsICJrbF9jb21wYW55X2lkIjogIkhCREE5NSJ9 About the Phantom Pain. Usually I read inMotion Magazine and Amplitude Magazine. Both free subscriptions in the US. But you can read them online easily. Their website are https://livingwithamplitude.com/ and this next link is to subscribe to the newsletter https://www.amputee-coalition.org/limb-loss-resource-center/publications/inmotion/. They are not spam and don’t get your email box full of waste. They are serious and trustworthy resources. I have been trying to make the Best of my situation. I did the Training for being a Peer Mentor Visitor, I’m Volunteering with new amputees in two Hospitals in my area, trying to be busy and putting things in perspective. If I wasn’t here suffering this excruciating pain, I’ll be dead. Thinking that way, watching my kids to grow as a lucky part of it, helps me a lot to survive the day. Taking one day at a time. It’s hard. I’m still searching, hoping for new strategies to lowering my Phantom Pain. In the meantime, being part of the Amputee Community and receiving messages from you, really makes me feel better. I’m not alone. I’m not the only one living with this crazy and intense chronic pain. Thank you! Good luck with the GMI Therapy. I really hope that works for you. I’ll ask around here to try it too. Xoxo Alexandra
  18. Alexandra

    Phantom pain worsening over time.

    Hi Angelina. Thank you for your response. My PP keeps getting worse, now starting to affect my everyday activities, because the Pain become so intense that I need to stop, breathe, wait, I cannot keep up with what I was doing. It’s torture. Sleeping is the worst. Sadly Mirror Therapy never worked for me. Maybe because the nature of my accident being so violent. A distracted driver, maybe texting, crossed the center line and hit me head on on July 2017. I survived because the accident happened just a block away from a Fire Station with an Ambulance and the Hospital was less than 15 minutes away. I broke more than the left arm and leg. I have lost the Spleen, almost all of my molars because I broke my jaw too. A vertebrae in me neck, but only partially. Sinus, nose, etc. They couldn’t stop my bleeding so they cut my leg the first day. They tried to save my arm, but couldn’t. I feel my foot and arm pressed in a wrong position like under a vise or in an anvil. I cannot move them at all, I think that’s why the Mirror Therapy doesn’t work right. Now like 15-20 times a day I started to have shoots, stabbing and burning sensations. Before they were only a few times a week and only for a minute. Now they’re happening several times a day, very intense and last more than two minutes. I think my problem with the PP being difficult to treat, is that I have a brain tumor over my Hypothalamus, big, surrounding my Carotid artery, pressing the optic nerves and brain stem. The Drs don’t want to do surgery because the risk is too big due to the location. They guess is benign, a Meningioma. As I started having Hormonal issues, because of it, (the pressure over the Pituitary Gland is enough for it to behave as having an internal tumor). I think the tumor is my problem right now. But I’ll need to live with it probably. The Doctors doesn’t have solutions to suggest since I have tried most of them. And I don’t want to have any extra surgical intervention.
  19. Donj307

    Newbie

    No I don't mind at all. Phantom pain is 100 percent real. It is your brain miss firing signals but it is fucking real.. Me and you both know that loool. Your friends like mine are trying there best to understand the situation. The crps is still there too so were getting it both barrels I have phsios that just nod and smile when I say I'm in pain. The crps is bad. They just don't get it. Sorry to hear you fell... Proper bad luck. Where are you... Uk or elsewhere.. What meds are you on. I'm still sleeping downstairs at the minute and my bathroom is unusable for me. So getting washed from a bowl of water lol sleeping on the sofa. All adds to the situation been a bit shitty. The first leg I got wasn't perfect but I was walking in bars and on 2 sticks. My leg has shrunk so it started sliding off. The 2nd leg I've just had no luck with the bottom of my stump(I know what you mean about feeling uneasy saying that) is really painful and I can't really tolerate weight on it. So there now there making my 3rd socket. So fingers crossed hey. I am quickly learning that this is going to be a long process. life long which I was aware of before I had the amputation. But it's literally so hard right now. I cope differently every day. The mental side of this is almost as hard as the physical. That I wasn't expecting Any way I'm rambling. Id really like to carry in talking too. Until next time. Goodnight 🙂
  20. Janey50

    Newbie

    I am new from UK been double amputee since October 2018 am fortunately below the knee am currently learning to walk with prostheses
  21. Janey50

    Prosthetics

    I have to wear gel socks under my prosthetics as I was getting intense pain when standing or walking has anyone else used these
  22. Angelina

    Newbie

    Hey Donna, To be honest I'm much the same as you are! I spend my nights awake wondering if this was all worth it! Would I have been better off with a leg that was equally as painful, but at least tangibly there if that makes much sense? I'm so sorry to hear that you are still struggling too! It's just lousy isnt it. I am trialling a new kind of shrinker/compression sock as we speak...its made of umbrellan and is supposed to repel electromagnetic fields and other atmospherics which someone somewhere has said could well be a cause of phantom pains. I'm only wearing it a couple of hours a night atm but in the next few days I should be wearing it all night ...I've been waiting to try it for a while so am holding out hope that it will work. I'm also doing GMI therapy which is supposed to be a gentle lead up to mirror therapy...its still a major trigger for me atm but I'm persevering. I had my current leg fitted on Wednesday so am yet to try walking on it...I was cracking on really well with the first leg and then I got an infection in peggy (I still struggle with the s word! Sad huh!) So wasnt able to wear it and then shortly after i had got the go ahead to start wearing the leg again i fell from my bed no more than 1ft off the floor and fractured my femur in 2 places. The end of peggy Is still super sensitive ...the first session is on Monday so fingers crossed it will be ok. Keeping peggy warm seems to help ease the pains but truthfully I've yet to find anything that completely takes the pain away. I dont know that physically me rocking back and forth while rubbing peggy does anything to really take the pain away or if it's more psychological but it does seem to ease things, much the same as jiggling her around changes sensation to something not so tough to deal with...but who can do that all night! I agree with you regarding friends and family...mine also have been great to an extent but they dont get it and maybe that's because no one can unless they have experienced it? I've even had friends tell me it's called phantom pain because it doesn't exist...its all in your head! Cheers now you're saying I'm making it up! Not helpful!! I'm going to post this now as my phone is dying and in typical amputee fashion I cant reach the charger! But I'll carry on tomorrow (as long as you dont mind!?) Angela xxx
  23. Donj307

    Newbie

    Hi, I forgot I'd even posted on here your the only person to wrote back. Honestly it's still all a bit rubbish at to he minute. The phantom pains are strong. Really bad make you just shout out etc, I'm on all sorts of meds, not sure If there making all that much difference if I'm honest. Physio is slow having trouble wearing the leg due to stump pain. How are you doing, any advice ? Thanks for replying Donna x
  24. Angelina

    Newbie

    Hey Don, I had an above knee amputation also due to CRPS. I'm struggling with phantom pain also. Equal often to the amount of pain I was in before the amputation. I wonder how you are getting along now? and if you found any way/s to combat the pain? Angela xx
  25. Angelina

    Prevention of Phantom Pain

    Gil, I have severe on going phantom pain morning, noon and night 😞 I had a general anesthetic plus a nerve block for my above knee amputation. When the block had worn off I had no phantom pain at all until maybe 3mths after, the pains have gotten worse and worse until now I'm feeling pain 24/7. This is much like the CRPS I had that lead to the amputation in the first place!
  26. Angelina

    Phantom pain worsening over time.

    Hi Alexandra, I am feeling exactly the same. To begin with I barely had any phantom pain but as time has gone on it has got worse and worse. I have been having probably the worst episode the last 2 weeks where I have been having pain 24 hrs a day. The normal pattern for me is pp just at night but the past 2 weeks it's been constant! I am just trialling a new type of sprinkler made by issue. It is made with something called umbrellan which as far as I can work out repels electromagnetic waves and other atmospherics. Would you be able to ask your prothetist about it and maybe give it a try? I cant say whether it's working or not really as I'm only wearing it a couple of hours a night to get used to it but, I will be wearing it all night in the next couple of days so will maybe have some more results to share. Other than this I am also at a loss as to what helps. Have you tried GMI therapy? I am just starting to try that also. My physio told me it is important that you do this and lead up to mirror therapy (I dont know about you but mirror therapy just made me feel like I was losing my leg all over again every time the mirror was removed!) Apparently the GMI therapy is a gradual lead up to mirror therapy. Xxxx
  27. Hi everyone new to forum but been an amputee for 61 years. Never been in the sea on holiday and very frustrated about that. Im looking for advice to source a product that is waterproof and can be pulled over my full length limb. Like a rubber / latex stocking! Please note not those horrible inflatable covers or the elasticated shower bag. I hope you understand what I mean . Searched everywhere without success. Any help welcome. Best wishes Michael
  28. Peter Read

    ankle fushion v amputation

    Hi all newbie to this forum had an fushion of left ankle October last year atRnoh Stanmore the pain of got now is worste the before the opp. After a life time of sporting abuse mainley running paying for it now both knees replaced double wrist fushion now the ankle got osteoarthritis. So what are the options long term should i wait longer than the 7 months to see if the pain dies down,ie what stories have people got of there path to amputation ie ankle of as bk seem bit drastic or is that the norm... Im a gardener by trade pro ann cons of amputation driving after opp manual van clutch ect recovery as i said new to this but like others not the constant pain and pain relief at 53 just wanted to know if they remove ankle or bk thanks...
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