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Heather Mills - Amputee Forum

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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 =) 

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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

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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

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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

 

 

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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 🙂 

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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 😉😍

 

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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 🙂

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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

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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  

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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

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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.

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