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Limb salvage, lower femur

KarenG
Posts: 2
Joined: Apr 2006

Hi. I was diagnosed with a giant cell tumour in my left femur 3 years ago, fortunately with no recurrence. The tumour was aggressive, undiagnosed for 6 months, but luckily benign, so no chemo needed.
I need to know about recovery from a part femur replacement, and this is the only site where I have found people having this operation. I'm 38.
On diagnosis 3 years ago, I had the end of the femur 'repaired' with cement, but there was not much bone left, only a couple of millimeters in one place. My muscles were not affected, luckily. I have had to endure a few operations to keep the joint going, and I also fractured the femur in a minor fall and had a 40cm plate fitted.
The joint finally became unviable and I had the lower part of my femur amd knee replaced a couple of weeks ago.
Having had 5 previous operations, I was not prepared for the pain and also the stiffness in the joint.
My worry is that I left hospital last week with a 60 degree bend and 100 on a passive machine. This is now down to 50 and my knee feels very stiff. Is this normal and will I regain the bend? I feel like there are bits sticking inside, restricting my movement, which I did not have when I left hospital.
I'd like to hear of other people's experience of getting back on their feet following similar replacements and how long things took. I have not had good mobility for the last 2 years (since I broke the leg), but have managed to get around unaided but with a limp.
I'm totally reliant on cructches at the moment.
The pain is not too bad and I'm off the morphine and on stronger 'over the counter' painkillers. Nothing compared to walking with a tumour in your leg! That was painful!.
Still, I remain optimistic as always.
I'd like to hear about similar recoveries.

Karen_G
Posts: 2
Joined: Aug 2009

Hi, I've just read my old posting (above) from 3 years ago, and things are now dramatically different since my distal femur replacement. No sign of any recurrence of the giant cell either.

I now walk completely unaided and can undertake all daily tasks easily. The knee and distal femur replacement still don't feel like my own though and the 'clunk' reminds me of the fact from time to time. I also have to think a bit before going down stairs, and if the stairs are particularly steep, the knee does not quite bend enough to be able to go down normally.

I have regained good mobility with 120° bend. On the advice of my specialist, I do not run or jump at all, but have no problems walking distances up to a few miles.
I have not taken any pain medication for the knee since about 4 months post-op.

Bottom line is, I can walk, drive, work full time, keep the house clean, and keep up with my 2 children. I've had to stop my active sports like skiiing, but can still swim.

And yes, I do set the airport security alarms off every time I fly!

Nicci_G
Posts: 1
Joined: Jan 2010

Hi Karen, your posting above as just given me some hope. Thank you! You see, my mum went through a similiar procedure (she had her femur bone replaced) a little under a year ago and his been feeling a little bit dispondent. She is still expriencing severe pain in her leg and is saying her leg has become "skew"...do you know if this is normal? She walks with one crutch and can drive and go to work fine, so she's doing pretty well i think.

Ive just got a few questions, i hope u wont mind answering? How long did the pains last and are you still expriencing them, also what did u to physically to get where u are now?

Thank you and hope to hear from you soon.

Karen_G
Posts: 2
Joined: Aug 2009

Hi
I was in pretty constant pain for about 4 months, and since then I have had the odd niggle. It took about 8-10 months to stop feeling some pain on a daily basis, the duration gets less as time goes on. It still swells up a bit from time to time and if I walk too far (over 5 miles) it aches and swells. Nothing that an over the counter painkiller doesn't sort out though.

I have an additional problem, in that my kneecap does not align properly, which precludes me from sudden bending (it hurts when the kneecap 'catches'), but that is something I am prepared to work round and I am not keen on any further surgery to rectify this. The risk of another op is greater than the minor inconvenience it causes, plus I've learned to live with it.

My leg initially turned inwards a lot too, which looked and felt pretty strange. This went away over the first year, through strengthening the muscles in my leg,

I was put under a physio initially, who gave me some basic exercises to do, mainly from my bed and chair, standard things to exercise my quads. I then had an intensive physio session after 6 weeks, which included hydrotherapy and a number of 'quad' exercises. (standard knee rehab -ask any physio) . I then started on stairs, very shallow ones at first, progressing in height, and only going up at first.

I joined the local gym after 3 months and was basically on my own to do lunges, quad presses, and other non-impact exercises, but with a 2-weekly physio visit for additional advice. I kept this up for 6 months, then stopped. Since then, I have done a lot of walking and swimming (front crawl only, no breaststroke!). If the knee starts to feel weak now, I do a week or so of the quad exercises my physio gave me.

Note that I really only started to feel 'normal', minimal pain, and good mobility after the first year.

The key to recovery is family support (mine were great), determination, and not lapsing on the exercise regime. I often ended up exercising at my desk over lunchtime, just to fit it all in. Also, keep in touch with your consultant amd physio and discuss any concerns with him/her.

Hope this helps and that your mum remains positive. The changes can be slow, but if you keep looking back to where you were a few months ago, you'll see how far you've actually progressed, certainly in the first couple of years.

janetannchadwick
Posts: 11
Joined: May 2009

I had a similar implant & actually had my femur cracked during surgery (so they put a tie-wrap around it). My knee was killing me, but that was fixed with resurfacing the patella. It glided a LOT easier after that. I'd be happy to talk with you

Janet
417-343-2909
http://www.caringbridge.org/visit/janetchadwick/mystory

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