To not be great flu that I still have my leg and wish they'd cut the damn thing off.

[Letmeeatcakecakecake]

Yes I am being utterly unreasonable but so fed up so go easy on me.

I had osteosarcoma in 2007, the tumour was in my leg, huge, and attached to my muscles. I needed to have chemotherapy and something called a distal femural replacement and also needed 87% of my quadriceps removed. I have about 2 inches of healthy femur bone near my hip.

When my (wonderful and talented) surgeon performed the surgery he had yo literally hammer the prosthesis into the remaining femur bone which has caused multitudes of nerve damage.

My leg has always been bad, but it is SO bad at the moment. The bushings in my knee have gone so I can't walk far without my knee hurting or bend it too much and it's constantly giving way and making me fall. I'm finding that it's exasperating the nerve damage pain much worse than usual and I'm in constant pain, limping, struggling. I feel pathetic.

I've walked part way down the road, started to be in agony, and be stuck where I am because I can't physically walk anymore, god knows how many times over the last 8 years.

I'm so fed up, I'm only young and just wish I could go for a nice walk :-(

Sometimes I think life would have been easier if I had lost my leg and has to use a full prosthesis :-(

Someone talk some great fullness into me :-(

letmeeat I've been disabled for just over 18 years. I have accepted it, mostly, but there are things I miss or am resentful of. I mobilse with 2 crutches, I am so angry that I can't walk holding DH's hand. I would have loved to have gone for a walk or bike ride with my kids, or to have danced with DH at a ball.

Our lives seem to revole around my hospital appointments and operations. We have difficulty planning things. I hate that my children have to do so much for me. DS1 recently moved out and joined the Army, it's the first time since he was 2 that he doesn't have to worry about what I need doing, he can do what he needs to do.

Pain is horrible. I see an excellent pain specialist, but I have some terrible days. I'm currently waiting for a big operation. I dkn't sleep well and sometimes can't cope with the weight of the duvet on my legs. It makes me as miserable as sin, but I try to keep a brave face on.

I do hobbies at home, I like knitting and reading. I need to keep occupied otherwise I get too miserable.

I would get referred to s pain clinic if I were you. They have counselling facilities which might help you if you are feeling down and resentful.

The thing is if nerve pain is the biggie you could still have phantom pain post amputation.

If your knee gives way would a brace help?
Have you tried TENS for pain management ?

it must be very difficult. I know a few people who have 'best' cancer and they get pissed off that they're meant to Ms/Mr Sunshine all day everyday. You're allowed to have problems and complain.

You are so not being unreasonable, constant pain is the biggest most miserable bit of BS on the planet IMHO. You sound like you are doing brilliantly, lots of people would just give up not keep swimming and look after themselves.

I'm posting to make two points really, firstly have you been to/heard of any yoga/meditation classes for learning how to live with pain 'mindfulness' I think is the new buzz word in pain relief and hopefully the future instead of horrible head messing drugs. I am starting a class this week and I'm very excited about it. So much so that when my GP told me to stop being upset because my recent MRI 'didn't show anything that would kill me so I should be happy' when it actually showed that my degenerative spinal condition had started to fracture my vertebra and meant that there were no alternatives other than pain medication from now on in, I didn't kick him in the shin to show him what pain was like. Solidarity OP, sometimes the well meaning 'well at least' comments can be the ones that upset you most.

Secondly my friend had the same as you but the surgeons went for the whole hip dis-articulation amputation and the prosthetic is huge and clumsy and very hard to attach due to the lack of stump, he also keeps 'breaking' his leg because the knee joint isn't very good. It's not easy either, or pain free because the phantom pains he has are crippling and he can't even rub them better. Not that I am trying to take away from what you are saying but don't upset yourself by thinking you would be jogging through flower meadows (do people even do that?) if you had gone the whole hog. What a shitty choice to have had to make at 18.

Well maybe if not a class you could find something online to listen to in all those hours of the day you probably have spare. Or just put it in your diary for 10 years time when you have a minute to sit around being all mindful.

Hi! My dd2 was born without a hand, so amputation isn't as fearsome to me as it can be for others.

What I would say is look into it thoroughly. There are advantages as well as disadvantages.

You would get phantom limb pain, almost certainly, and different people get different amounts. From what I can tell, some people will tell you it's mind over matter there, but it's really a matter of luck.
It depends on your area and limb centre as to how good they are. Ours is brilliant, but you do hear horror stories too.
You may find you have little choice on the NHS as to which leg you get, so if you're pictuing yourself in blades, yes they can be got, but not necessarily on the NHS.
Cost for dd2's hand myo prosthesis if not on the NHS is not inconsiderable. The moving part is around 5k, then the arm has to be made round it. Legs are much more technical bits so probably are more. So private is not cheap, and I don't think health insurance will pay.
Prosthesis do go wrong. Dd2 can manage fine without hers; not so easy if you rely on it for walking, driving, and just getting around.
You will still get dirty looks for using a blue badge space (I know someone with 4 prosthetic limbs and he's been known to pull them off in front of comments)
You won't get up and walk straight away. It's a long process. The limb has to heal, you have to get used to walk on it etc.
And the obvious one: There's no going back from the amputation.

Advantages:
Prosthetic legs, whereas they don't look brilliant as a real leg, are pretty good for moving on. The technology is better than arms here.
Once you're used to them you can do sports-there's a lot of help for amputees here. Run, cycle, all sorts of things, in fact I can't think of anything that's off limits. I've met a lovely chap who lost his leg less than a year previously at a running clinic with dd2 and he was really fast, and getting better rapidly.
They actually look pretty cool. A lot of leg amputees will have the leg on display rather than hidden behind trousers. And if you don't fancy that, then you can wear trousers and most people won't notice.
There are charities specifically there to help and give advice to amputees. This is a couple: limbless-association.org/ www.limbcare.org/
Technology is improving in prosthesis all the time.
I beleive that once you have settled down with a limb (and your residual limb is not changing) they can be very comfortable.
The prosthesis are pretty reliable. We charge ours like a mobile phone over night. I think we've had 2 myoelectrics go wrong in7 years of using them, and that's with a child who does sometime drop, or shake etc the limb. Our limb centre we can also go down same day in such circumstances and they will do their best to mend on the spot.

I do know of people who have chosen to amputate in such circumstances. All I know of have been very glad they made the decision. However I wouldn't meet the people who didn't make that decision, and I suspect they would be happy with their decision too.

Good luck.

So sorry that you're going through this. A major injury that limits your mobility & the pain that goes with it is debilitating.
The painkillers just don't touch it.
Just sending big unmumsnetty (((((((hugs))))))) & hope that they work something out for you soon.

My late and much loved Dad lost his leg after terrible injury and after several successful operations to keep it, one operation wasn't so successful and he lost it above the knee.

He lived on mighty strong pain killers in a failed attempt to combat the phantom pain, which he believed was much worse than when he still had the leg. He always, always, told me, ''if ever you are in a similar situation, keep the damaged limb as you never know how medical science will progress in the future. Once it's gone, it's gone.'' The long term use of pain killers was also a contributory factor to his stoke and death some 20 years after the amputation.

After losing his leg he carried on with life extremely well, probably his best endeavour was learning to ski. :) He danced, wallpapered, drove, but couldn't walk very far as the constant stresses on his good foot caused lots of discomfort too. Eventually the bones in your good foot collapse... :(

I sincerely wish you all the best with your incredibly tough decision xxx

Although I haven't suffered anyway as near as much as you - here's what I've learnt about pain. It is worth talking to the pain team. After arguing against it I had CBT through the pain team and found it very useful. Particularly about learning to manage the pain. Personally amytriptyline, gabapentin and Lyrica didn't help me but lots of people do benefit so might be worth considering when the baby is born. I swear by Versatis, the lidocaine patches but that's on my arms so no idea if they would help your leg but perhaps worth a go. As they go on the skin it's better for the baby. I used them all through pregnancy. I found Tramadol the best painkiller for nerve pain. I had dire warnings about the effect of the maximum dose when I was pregnant on the baby from the Obs team but the pain team kept me on it. I now have a healthy 2 year old so the pain team were right. I tried hypnotherapy. Not as helpful as the CBT but good for pain episodes. Finally I also read Melanie Reid's columns in the Saturday Times Magazine (Spinal Column). I find it gives me a lot of perspective and inspiration.

My sympathies - nerve pain sucks. Also give yourself some TLC.

I do know you feel. 25 years ago I had a total femoral replacement when I was 15. For a long time it was ok but I have had multiple revisions, total hip replacement now too. My leg is so massively swollen now and the prosthesis is infected. My surgeons have done all they can and I am on permanent antibiotics but still have to manage constant pain, general uselessness and now discharging sinuses from the infection. I am giving a lot of thought to the very amputation you mention. My surgeon suggested I look at Dorset orthopaedics as their prostheses are cutting edge but not available on ten NHS unless you can persuade your health team to fund you. It's a big decision and not one to undertake lightly. At the moment I am still inclined to plod on but don't know how long for. I do feel for you it's very difficult. I find evened finding a car to drive is getting harder and harder as I can't bend my knee much and need the seats along way back and at just the right pitch or it hurts too much. I guess you need to really look into life with a high amputation and weight it all up. If you want to chat then do please pm me.

I'm not in the same situation but have a few similarities.

I suffer from a neurological illness and the nerves in my hands, feet and lower face are all numb, yet I still get awful pain in my feet-that-i-can't-feel. I take amitryptaline for it which does help.

Last year, because my balance is so poor, I fell and broke my ankle really badly in 3 places and had some very nasty deep cuts in my skin and muscle. I found out afterwards that they thought I only had a 50% chance of keeping my foot. I'd been consented for amputation in case, but it was a lot worse than they first thought.

It's been a nightmare of pain, physio, pain, horrible "phantom" feelings that my foot is on at an angle, unable to walk even the shortish distances I could before, weight gain, oh, and more pain. Sometimes I just wish they'd cut the bloody thing off, though I'm perfectly aware I'd have most of the symptoms anyway.

So while I know I should be grateful to the surgical team who took over 3 hours to do some really amazing surgery, there are many days when I don't know it, if you catch my drift.

It does sound like you need to revisit this with a surgeon and see if GP could get you referred to a neurological pain specialist. I hope you can find a way through this. Please feel free to contact me if you need a moan x

YANBU!

I have a lower limb amputation.

doctors tried to save my foot after an accident when i was 19. After my foot shattered and the drs wanted to patch it up even further i decided to have the leg amputated.

I wish they had just amputated the damn thing to save on the agony and infection :(

Because I was so unwell and in so much pain when the leg was eventually amputated i continue to suffer nerve and phantom limb pain. My stump has had many issues and have has it revised and had to learn to walk a second time.

Currently I am unable to wear a prosthetic and am wheelchair bound. I have arthritus in several joints due to excessive use.

The nerve pain in the stump continues.

I take amitriptyline codeine diclophenac and epilim.

I know how you feel.

Please feel free to pm me if you want to chat.

My son is now 6.

As for acceptance, I have gone beyond caring about others opinion, and I try to take each day as it comes.

I have learnt to ask for and to accept help, which although sounds easy really isnt (or wasnt to me anyway!).

My advice to you? Be kind to yourself. I have met lots of ppl with full amputations up to hip level. Its not bloody easy. But it may improve your mobility. For me it was a case of struggling as you are day in and day out and thinking this isnt going to get any better pain wise.

If you get in touch with the limbless association im sure they would be happy to put you in contact with ppl who have the level of amputation you are considering-you need to talk to ppl with experiences of daily life, kiddies etc who use the prosthesis you may end up with.

Let us know how you get on

No amputations here but disabilities. YANBU. It's bloody shit.

I would say I suffer very badly with nerve pain, and there are some medications which can be really useful - they make it more 'background' so that I can function normally at least.

Sending empathy and tea.

Thank you everyone.

I'm going to go see my team again and demand a referral to some form of chronic pain clinic or referral to anything that can help. I'm really annoyed that all these years I've just been told that it's something I will just have to live with and didn't even know these types of clinics existed.

Today I've been in so much bloody agony, went food shopping and once I finally managed to load the bags in the car I felt like just sitting in there and crying for a few minutes because I felt so helpless and crap. I should just do this task online but every time I've ordered meat online I'm given the stuff that's about to go out of date.

Spent the rest of the afternoon limping about the house, wincing, clutching my leg when it started spasming ect.

I've also decided to get in touch with DS's school to see if I could arrange to be allowed to drive into the gated staff car park for the school runs. Currently I'm having to do the school run twice a day and driving there always seems impossible as there's no parking outside due to the other parents driving and being no disabled bays I could stick my car in. Hopefully they will allow me to do this as I'm genuinely struggling to get him to and from school at the moment.

I never realised that you could still have phantom nerve pain once a limb had been amputated. I knew about phantom limb syndrome but I didn't realise that people could still feel pain in it. I don't think I would genuinely consider having my whole leg amputated though, as it would be entirely up to my bottom and there wouldn't be a stump to attach a leg onto, like a poster above mentioned, it would probably be quite clumsy. And also like another poster mentioned... You never know what medical advances will happen in the future.

Right, so plan of action

1. get in touch with hospital demanding pain tram referral

2. speak to doctor and midwife about exactly what pain relief I can and can not take

3. get this baby out!

4. push to have bushings/knee replacement as soon as possible after birth

5. hope for the best

for all of you xxxxxx

Sounds like a great plan of action. Be prepared to be super assertive about seeing the pain team as they seem very hard to access. There are also residential pain management courses which are a holistic approach to pain with intensive physio etc - the one at Bath is supposed to be very good.

A serious knee brace to maintain alignment and unload your knee might be useful - your team should be able to refer you to orthotics if physios can't get them directly.

St Thomas pain team are also very good depending on where you are based. They have a very wide referral area. One tip the pain consultant gave me on labour was get the pain relief early. If you are in pain before you even start labour, you can get overwhelmed very quickly. I had an epidural much earlier than they would normally have given me one as the pain team had signed off. The nerve pain was horribly exacerbated by labour pains (which I could cope with). I was so grateful for the pain relief. Each time the drugs wore off it was awful (and messy). Also when they run out of drugs they will give you in labour - liquid paracetamol may still be an option.

I wish you and the baby all the very best.

You really have to push for pain management appointments in my experience - I was referred via my neurologist as it just wasn't forthcoming via GP or orthopaedics.

(My dh is a GP and says in his experience, the orthopaedic team are mainly motivated by the x-ray looking good at the end of the procedure!!)

It's worth pursuing, though. They can give you more appropriate medications and also provide other therapies - I was able to get hydrotherapy and acupuncture which were both really good.

Glad to hear you have a plan of action! It does help when you know where you're trying to get to and how. Asking school for help is a particularly good idea !

I'm with the RNO Stanmore under prof Briggs... He's a bit of a 'top dog' within his field. Would you think I should stay with Stanmore for pain management or push for this elsewhere that may deal with it better? If Stanmore specialises in orthotics would they want their work to be looked after by their hospital?

And weegie that doesn't surprise me at all! Whenever I see someone the x Ray is greatly admired... I suppose you can't see the nerve damage on an x Ray so out of site, out of mind for them!

What am I on about? Specialise in orthopedic!

I feel very ready reading your post , you sound so brave

Of course you are not bu

I think you need to assess options and see surgeon again my dear and there are always options

My dad is having his 30th major surgery and he is nearly 70!

Don't think 'this is it'

Teary , not ready

Since Stanmore have a pain team, then it would be good to try them first as you'll probably get in sooner

Can't believe in nearly 8 years there's never been a suggestion of a pain team referral.

Stanmore is a good place and Prof Briggs is lovely, I'm sure he'll listen to you.
Good luck!

I can! Sometimes there isn't a hint of joined up thinking anywhere in the NHS. My rheumatologists don't know why I bother with pain clinic and pain clinic don't see the point of rheumatologists and I had to demand pain clinic from the GP's which means now they think I'm a drug seeker . You need to be tenacious and learn around your specialist subject, ie you! If you ever need a gang and support and help there is a thread of people with serious back problems, I know you are not one of those BUT they specialize in helping each other with pain relief, different options on specialists and how to be bloody minded with a great side of shopping and what boots and shoes work for awkward, sore bodies whilst still looking great. Also on living with chronic pain, which is a specialized mind set in itself.