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Heather Mills - Amputee Forum
Aimee

Looking at amputation revision

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Hi, I am wondering if anyone has been in my situation.

I live in Australia.

I was born with a congenital deformity and was BK from birth. My patella did not fully develop and so 6 years ago (age 32) I had a through knee amputation (after an unsuccessful knee recon and multiple knee dislocations per day). I have been unable to weight bear on the femur ending and have shooting pains up through the distal end. I have to wear a prosthesis to bed and sleep on my stomach to stop the night spasms - the cause of the pain is unknown. This has caused me some major jaw problems from sleeping face down.

I have a neuroma which is 7cm distal but that does not give me problems as it is tucked into muscle. No neuromas have been found on my stump.

I am only 153cm (5'3") and only have around 25cm of shin (about 10") which means I have a very short leg swing and walking is difficult. Plus as I am unable to weight bear, the process of making a prosthesis is frustrating and my knee has to be offset furthur right than my socket to stop the gapping problem. I currently weight bear on my ischial.

I have a decision to make. I can either go pain management and look at having injections to try stop the distal spasms, however, I realise this would be long term and would probably be on drugs the rest of my life. Or, I have the option of furthur surgery - but they are looking at taking off around 8" - as I have very little tissue around my femur ending. This would mean I would be going up to just above mid thigh.

I would feel more comfortable with only 3 or 4" being removed, but around 8" is frightening.

I would like to know if anyone has had this revision done and how it has affected them. Does walking become easier by having a normal length shin? Or is the higher amputation more fatiguing than a short shin because of less leverage of a longer thigh?

Also, would the AK allow me to have a more stable fitting, gait, and walk?

If you have had to make this decision I would love to speak with you.

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Hi, Aimee, and welcome! I'm afraid that I can't weigh in on your situation, as I'm a fairly uncomplicated left BK, but I did want to say hi and let you know that we have some AKs who may well have encountered something like what you're facing...either personally or in dealing with a friend or acquaintance. I can think of one member (who occasionally checks in here) who at least has dealt with congenital amputee issues and who is both a BK and an AK. If she doesn't check in here soon, I'll see if I can get the two of you in contact.

Go ahead and ask questions and look around...I hope we can get you some of the info that you need.

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Thanks :smile:

Hello mate,

I had an above knee revision. Very confused on why the 8 inches??? Please ask and get back to me so I can ask my leg doc and orthopedic doc.

Just because a neuroma is buried in muscle does not mean that it is not causing the shooting pains. Nerves cause shooting pains while the Bone causes a more dull constant pain while weight bearing. You may also have bone growth due to calcification around the femur which I had that imitated shooting pains.

I had the femur plugged with my bone ground with epoxy and rounded like the end of a broom stick. All Neuromas cut and buried in the bone, holes drill to reattach muscle in the right place so I could build muscle.

Please get back to me about the eight inches. Sometimes leg docs try to hit the magic number of (end of leg 3,5 inches to center of prosthetic knee. The problem is you know have less of a leg to muscle through your gait. Even a few inches can make a considerable difference in your ability to walk long distances.

The key is to know why they want to take so much off. It does sound that you need some off so that in the future you can weight bear.

One piece of advice: Be VERY patient after your surgery. Start slow and excercise daily with resistance bands after the doc has given you the ok.. It will take a good 4 to 6 months to weight bear, but it will be worth it.

I am now wearing a Brimless socket that dos not even come close to my crotch. ALL weight bear which i could only dream about a year ago. Make sure you get a shock absorbing foot. Endolite VT, Ossur has a couple as well. Get the lightest one though. These are great for taking pressure off the distal end when walking.

Kirk from up over.

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Thanks for your reply.

They want to take 8 inches off as all my tissue has been pushed up to the top of my thigh. bECause of the pain, I wear my old prosthesis most of the time which is mid thigh length - and all the tissue bunches up over it. I wear this one as I have a major rash on my upper thigh caused by socks and nothing seems to be able to clear it up.

I'm trying to get an appointment to find out why I am having so much pain as I don't want it to be one of those problems that will still be there even after the amputation. I really do not want to go that high.

I'M changing prosthetist's today and hopefully the new girl (have spoken to her) will be able to make me a fitting that uses a full length silicon liner instead of socks (thus ending the need to wear my old leg all day). I still need to wear the half length leg to bed because it stops the shooting pains - though I have to sleep on my stomach which has put my jaw out of alignment, meaning I have spent heaps of money trying to get my jaw corrected (and i can't work when I can't speak because of jaw spasms).

I think what I need to do first is get that full length liner and hopefully the tissues will come back down my thigh as they should. And find out why I am having so many spasms. I have a neuroma which is 7cm distal, but that's not what the pain is from.

The bone thing you mentioned I haven't heard about before, so when I can get an appointment to see someone I'll have to ask about that.

Thanks

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Oh, Kirk,

I've been hoping for the same thing - just to get the femur ending ground down - they refuse to put the neuroma into my bone though because of something they call bone vibrations (plus when they press on it, it's not the pain I am getting through the stump - it feels like the same type of pain, but not from the same place).

You've given me some good advice, thanks,

Aimee

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No problem at all. I have an elevated vacuum socket. Please google it. You would really benefit from having constant vacuum which does a few things for you.

1. Keeps your leg volume the same throughout the day

2. Holds your leg on with no straps or pins

3. Makes your knee,pylon and foot feel 30 percent lighter

4. Feels more a part of you

5. For you, it would probably help with the tissue bunching

Lastly, it is barometric pressure which is used for healing in some medical instances. In other words, it's healthy for your leg and will help you heal faster. You can still use a full length silicone liner.

Look on Otto Bock's web page for the Harmony pump or Ohio Willow Wood for their version. Do some research. Mine is a proprietary model.

Find someone that that will fit you with an elevated vacuum socket. Also, as I stated in my last post, do whatever you can to get a foot with both rotation and shock absorption. Critical in my mind for sensitive AK's. Takes SO MUCH pressure of the limb, hip and lower back.

I have demoed them all so let me know if you need advice from my perspective. I'm no doctor but I have tried 5 knees, 12 feet and multiple sockets.

Kirk from up over

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Hiya Aimee where in Oz are you?

Might be able to find someone near you to have a chat.

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Hey Kirk,

I've tried a vaccuum liner, however, it tended to make my leg swell up :sad: -I have changed prosthetist now, and the new girl is making me a leg which uses a very thick liner with ridges - an Iceross Seal-In Transfemoral Liner, it's meant to even out the pressure, so weight is taken around my entire leg, and it wont need to go as high (so it's not ischial bearing) - hopefully I'll be able to ride a bike again as it won't have the bulky seat. I have the casting on Friday, but as she is getting married, I won't get to try the check socket for a couple of weeks - fingers crossed this will help with the tissue displacement problems (and I really hope it doesn't swell up). I've been using a long sleeve silicon in the mean-time, but it tends to roll down my leg, so I have to flip it over the socket top - both give me a rash :wacko: .

I discovered a couple of days ago that if I use a heat pack under my stump at night then put an old stump sock over it, I don't get the spasms - the plastic surgeon said the neuroma is not the source of the pain, but, I find it odd that when I put a heat pack there the spasms stop. I'm seeing a neurologist but that's not until the middle of Feb, the city I am in is not as built up as other parts of Australia, so specialist appointments take a long time. I want to find out the real reason for the spasms and pain - I don't want to go through any amputation (even if I can build up the muscles to have a short amount removed) until I know what the pain is from - it would be pointless if the problem was going to continue through.

Keep ya posted

Aimee

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Hey Kirk,

I've tried a vaccuum liner, however, it tended to make my leg swell up :sad: -I have changed prosthetist now, and the new girl is making me a leg which uses a very thick liner with ridges - an Iceross Seal-In Transfemoral Liner, it's meant to even out the pressure, so weight is taken around my entire leg, and it wont need to go as high (so it's not ischial bearing) - hopefully I'll be able to ride a bike again as it won't have the bulky seat. I have the casting on Friday, but as she is getting married, I won't get to try the check socket for a couple of weeks - fingers crossed this will help with the tissue displacement problems (and I really hope it doesn't swell up). I've been using a long sleeve silicon in the mean-time, but it tends to roll down my leg, so I have to flip it over the socket top - both give me a rash :wacko: .

I discovered a couple of days ago that if I use a heat pack under my stump at night then put an old stump sock over it, I don't get the spasms - the plastic surgeon said the neuroma is not the source of the pain, but, I find it odd that when I put a heat pack there the spasms stop. I'm seeing a neurologist but that's not until the middle of Feb, the city I am in is not as built up as other parts of Australia, so specialist appointments take a long time. I want to find out the real reason for the spasms and pain - I don't want to go through any amputation (even if I can build up the muscles to have a short amount removed) until I know what the pain is from - it would be pointless if the problem was going to continue through.

Keep ya posted

Aimee

That is great news that you are seeking the advice of a Neuro. I know right now the end looks far, far away, but be patient. You are on the right path for sure and eventually you will be in a much better place. I am on my 13th month post revision and I just got a new foot that I love.

Good luck yo you and keep us up to date on your progress.

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