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

(58 Posts)
Letmeeatcakecakecake Mon 26-Jan-15 20:30:14

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 :-(

TheCuriousOwl Mon 26-Jan-15 20:34:14

You know what, I think you're totally NBU to feel awful and you shouldn't have to feel grateful!! OK, so the surgeons did the right thing in attempting to keep the leg... but actually maybe you would be better off without it. And you are SO not being U for thinking so. It sounds really, really hard.

flowers

brew

Stillyummy Mon 26-Jan-15 20:37:10

Sounds horrid! Poor you. I complain if I lose a toenail- now who's unreasonable wink

EatShitDerek Mon 26-Jan-15 20:37:33

Message withdrawn at poster's request.

BarbarianMum Mon 26-Jan-15 20:38:01

I don't think you are being unreasonable at all to be totally fed up. It is also possible that you would be more mobile and experience less pain with a total prosthesis. Have you spoken to anyone about this recently? Whilst I am sure that they made the best decision that they could at the time, maybe it's not the right one for you. Or maybe it absolutely was but it may still help to talk it through with someone.

flowers sorry it's so hard right now.

Stillyummy Mon 26-Jan-15 20:38:21

Sorry- you wanted greatfullness talking into you... Could be both legs.

SauvignonBlanche Mon 26-Jan-15 20:38:58

YANBU, you don't need to feel grateful, you've every right to be pissed off, you didn't ask for the osteosarcoma!

It's hard to know whether you'd be better off as a hind quarter amputee. Distal femoral replacement is a big op but you'd expect things to have settled down by now.

Have you been referred to a pain team?

Hatespiders Mon 26-Jan-15 20:39:07

Of course you're not being unreasonable you poor woman! After all, you're the one suffering these problems, not the surgeon.
I wonder if you could explore the possibility of having the limb removed?
It would give you greater mobility perhaps and you may be pain-free. A modern prosthesis in place of your poor leg could be far less trouble and give you freedom to have that nice walk.
<<<<<hugs>>>>> and flowers Brave lady.

MyrnaLoy Mon 26-Jan-15 20:39:29

Another one saying that you are absolutely bloody entitled to feel angry and pissed off, and feeling those doesn't diminish in any way the fact that your have had treatment that was considered the best option.

I am in pain (not, I think, the level that you describe) and I get so frustrated at not being able to walk. I can't imagine the extra layer of complexity to your feelings because of what you have experienced.

It isn't fair - it's horrible, and piss annoying and you are definitely not pathetic.

skylark2 Mon 26-Jan-15 20:39:49

You're having such a rough time, I don't think you really need anyone to tell you that an amputation could have been worse sad

Do you go to a regular clinic or something where you can get some help with the problems you're having at the moment? Or can you make an appointment to talk to someone? It sounds like you're really hurting.

Why isn't there a chocolate icon?

PurpleCrazyHorse Mon 26-Jan-15 20:42:53

Sounds like you're being totally reasonable to be so fed up. I wonder if it's something worth discussing with your consultant and maybe speaking to some patients who've had a full prosthesis.

SaucyJack Mon 26-Jan-15 20:45:04

And a prosthetic leg wouldn't need shaving.

CMOTDibbler Mon 26-Jan-15 20:46:00

YANBU. My hand surgeon told me I'd have more function with a prosthetic. But the nerve pain probably wouldn't go away with the arm sad

TheFairyCaravan Mon 26-Jan-15 20:49:24

YANBU.

You have been through a horrendous ordeal. Nerve pain is a bastard. I suffer with chronic pain it gets you down, if ever they ask what I want rid of most I always answer the nerve pain. No-one can truly understand how bad it is unless they have experienced it.

MonoNoAware Mon 26-Jan-15 20:50:56

Grateful. adjective.
feeling or showing an appreciation for something done or received

YANBU or under any obligation whatsoever to feel grateful that the result of your cancer didn't turn out to be 'as bad' as it could have been.

Also, if it's still causing you this much trouble after 8 years, you'd also not BU to say "actually, whilst I appreciate you saving my life and selected bits of my leg, this isn't working out for me. We need to explore other options". Not saying you haven't done this already, of course, but I'd hate to think you were holding back out of a misplaced desire to not been seen as ungrateful.

SauvignonBlanche Mon 26-Jan-15 20:51:03

A common misconception is that amputation will resolve nerve pain, it doesn't always.

Referral to a Chronic pain team is important for you OP. flowers

Ponyphysio Mon 26-Jan-15 20:53:19

I actually had the same type of tumour and had my knee and tibia replaced, most probably by the same team of surgeons. If your knee is unstable it needs rebushing, and will be massively painful. Give them a ring and get a review appointment. Another thing I found made a massive difference was taking a low dose of amitriptyline at night, really helps with that horrible nerve pain. Ive had loads of revision and follow up surgery, and although there have been loads of times Ive wondered if amputation would be easier...now ive got the nerve pain under control, I'm ok with the choices I've made. If you want an ear, PM me smile

Letmeeatcakecakecake Mon 26-Jan-15 20:58:31

Thank you everyone.

At the time it was a massive relief to hear the leg would stay (only just stayed), I was 18 and incredible vein at the time, so I was thinking more aesthetically than practically. I honestly think that if my 25 year self could go back into that situation, I would have to seriously consider the implications of saving the leg vs removing it. I was told at the time that the surgeons will do everything possible to save a limb rather than remove it.

It's so difficult with the nerve damage as I can go for periods where I am completely fine and pain free, and sometimes it can be managed with strong painkillers and/or anti spasmatics. The bushing issue means that I'm currently never going through pain free periods.

Typically, the issue with the bushings arose just as I conceived my second child so no corrective surgery until after the birth (due end of April).

At the moment, the hospital are reluctant to perform physio as they are nervous it will make my knee worse (can potentially be the difference between a bushing replacement and whole new knee). Whenever nerve pain and the impact on my life had been mentioned I'm just told that there's nothing that can be done and they recommend painkillers.

I'm trying to swim regularly as I'm pregnant and 1) don't want to gain too much weight (extra pressure on weak knee) and 2) I don't want the measly muscle remaining to waste away. Swimming seems to be the only activity I can do which involves my legs and me not being in agony.

I just feel so self conscious when I'm limping so over the place, and I always get filthy looks using my blue badge (trust me.. I'd rather to struggle to park than live with the aftermath of what I've had done!), constantly must look like I'm scowling (it's just because I'm in pain), I can't go far on my own, can't drive for long, my 5yo has to help me get around and be a lot more grown up than a 5 yo should be, my partners constantly catching me when my leg gives way, it's just horrible.

I think if it was a below the knee issue I'd be demanding an amputation but it would be a full blown leg removal, right up to my butt :-(

piggychops Mon 26-Jan-15 21:06:18

Can you have your leg amputated if you are in so much pain? I know it seems drastic but surely it's better than what you have now? Has your consultant been totally honest about risks and benefits of losing your leg?

OddBoots Mon 26-Jan-15 21:21:37

I hope this isn't an unwanted comment but your last post really resonated with me. I have a totally different cause but I have nerve pain, weakness and muscle atrophy in one leg that makes it hard to walk and means I sometimes fall without warning.

It obviously does nothing for the pain but a few months ago I decided to try to put aside the self-conciousness and get this walking frame with wheels and seat. The frame is not perfect but it helps keep me steady, lets me rebalance my weight and vitally allows me to sit down whenever and wherever I want. I've even been able to walk to work which was unthinkable before.

spanky2 Mon 26-Jan-15 21:31:44

It may be worse as your ligaments relax when you are pregnant. I take amitryptaline for migraines and I met someone who takes it for fibromyalgia. You may not be able to take it when you are pg. can you get a support for your knee? I got them when I was pg for my wrists as I had carple tunnel. You must see your consultant as you need better pain management.

Letmeeatcakecakecake Mon 26-Jan-15 21:32:55

Piggy- it's not something I've looked much into. I don't doubt for a moment that it's an easy solution and something to take lightly, I think I need to get this baby out, have the revision surgery and then see where that takes me.

Oddboots- not unwanted at all, I've got a wheel chair which I avoid like the plague due to practicality reasons. I think with another baby on the way a frame such as the one you have would be unpractical, however, I always found pushing my eldest in a pram quite helpful as I could kind of put my weight through my arms rather than my leg. Does that make any sense? Luckily he's a rather lazy child and was nearly 4 when he stopped using a pram! Maybe pushing number 2 around might help, along with the surgery.

Thanks so much everyone for your kind responses. A lot of you sound like you're speaking from experience... How have you dealt with your pain and disabilities in terms for acceptance? I was so good at first, because I was so happy to just be alive, but as things are deteriorating I find I'm just resentful about what happened.

I'd love that nice long walk.

EatShitDerek Mon 26-Jan-15 21:41:10

Message withdrawn at poster's request.

AuditAngel Mon 26-Jan-15 21:43:38

I know the situation is not the same, but I completely understand your comment about pushing the pram. My MIL likes to push the pram/pushchair, she has had both her hips replaced and finds walking very hard.

YANBU. Pain sucks.

soupey1 Mon 26-Jan-15 21:44:03

You are not being unreasonable, I made the decision to have part of my leg removed many years ago and it was the best thing I could have done as I walk far better now and with less pain! May I suggest you go back to the doctors and discuss options, it would be three or four months of pain and hell but then you may well have a far better quality of life.

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