Jump to content
Heather Mills - Amputee Forum
Sign in to follow this  
lisa

Advice Needed - Anyone out there who was a below knee and is now an ab

Recommended Posts

Hi

I was wondering if there is anyone out there who has had revised surgery and gone from being a below knee amputee to an above knee? I would really like to know what difficulties you have come into and what impact it has had on day to day life?

I was referred for osseo integration but I am not a suitable candidate. I am trying to find out as much as I can, so that if I do have to have revised surgery I have an idea of what might be in store for me. I have been told it is alot harder for an above knee but apart from that I don't really know much else.

Thanks

Share this post


Link to post
Share on other sites

Hi Lisa

I'm really sorry you have to consider this option...it's not easy is it? :(

As you know, I have 'both'. I've also had to consider further amputations. I assume that there's no rush for you to decide? In which case you just need time to get your head around things and take some deep breaths. While you're deciding what to do, remember to spoil yourself. :)

An AK is harder work than a BK, especially at first, but it's not that hard that you won't (eventually) be able to easily get around. I think the biggest difference is learning to manipulate a prosthesis with a knee, but there are several assisted knees on the market now that can help. After that it's the fact that the socket is higher up your leg & that you weightbear on different parts of your body. Clothing is a bit of a bind, especially with the traditional ischial containment sockets as they push your bum up too much (that's why more and more amps are choosing to have a MAS socket).

I know exactly how you must feel, Lisa as I had to chose between a knee replacement and an AK a few years ago...I chose the replacement, but I'll probably have to have another AK in a few years time when the prosthesis wears out.

It's hard...really hard...but you're not alone in this.

(((((hugs)))))

Lizzie x :)

PS Please PM or email me if you need to.

Share this post


Link to post
Share on other sites

Hi Lizzie

Thanks for your reply. I have got to wait for the specialist to write his recommendations and then I am going to book an appointment with my amputee doctor and my plastic surgeon. I just really want to know if having a further amputation is the only option for me. Its a catch 22 for me because I have my knee but it's the skin grafts that prevent me from wearing my limb. If it is the only option I would prefer to just get it over and done with. I'd be lying if I said that I'm not frightened, because I'm terrified, but at the same time I don't cope mentally when I have to use the wheelchair. It sounds weird but I feel trapped in a body that doesn't work properly. I don't know if anyone can relate to that?

Lisa

Share this post


Link to post
Share on other sites

Hi, Lisa

What a tough decision to make! :( I do not have any experience with being a BK revised to an AK, but I have seen some people with severe burns/skin grafts who were able to be fit comfortably. My prosthetist has one patient from the midwest who was in a a truck that was hit and caught fire. He lost both his legs above knee and the residual limbs had to be grafted with skin from other parts of his body. This patient was fit with custom silicone liners and a vacuum system, and is doing quite well. My advice to you would be to investigate all possible prosthetic options as well as medical ones before you make your decision.

I know exactly what you mean when you say you feel trapped in a body that doesn't work. That's how I felt when I couldn't wear my leg for over a month after surgery last year. I never feel handicapped as long as I can wear my prosthesis all day!

Best wishes and hugs,

Karen

AKA

Orlando, Florida

Share this post


Link to post
Share on other sites

Karen has given you very good advice, Lisa. Expore ALL options before having more surgery.

Having just come out of about a month of not being able to wear my leg, I totally relate to how you feel. I feel that the person in the wheelchair isn't me. And like Karen, with my leg on, I never feel handicapped.

Good luck to you.

Share this post


Link to post
Share on other sites

As an AK and a BK, I will say definitely explore every single option before electing to become an AK.

I'll be honest and say that there is a tremendous difference between being AK and BK. In my mind, being a BK you lose very little functionality; it's almost more of a cosmetic issue (phantom pain and other issues aside). Being AK is a whole different ballgame, as your leg becomes more "passive" than "active" in any activities.

Consult as many specialists as you can find. If someone told me I could have my right knee back, but in exchange I would first have to use a wheelchair for the next 2 years, I wouldn't hesitate to to take them up on it.

Share this post


Link to post
Share on other sites

Hi Lisa,

We have spoken before, so sorry if I am repeating myself, but have your tried the conventional limbs with thigh corsets to take the weight off your grafts.

I am in a similar position with skin grafts and can't bear weight at all on one of my legs, so wear this old fashioned type of prosthesis and it keeps me quite mobile. There's been a few suggestions for me to have revision surgery, also, but have seen a few people to get advice and at the moment I am holding out on the surgery. The disadvantage, for me, is getting this type of limb made, this type isn't routinely made anymore but there are still people around who do it.

I realize this type of limb isn't everyones cup of tea, but it does the job, and wasn't too much of a big deal for me, I started off on two of these, and for a while the skin grafted side was kept locked for walking.

Just a thought, might be worth thinking about.

Share this post


Link to post
Share on other sites

Lisa, I'm in the same boat as you at the minute, all round the knees and stumps are raw and I'm in a wheelchair :angry: Leslie tried the caliper on me and it did take the weight off the stump, however because the scars on my thighs are just as fragile the corset caused the same problems, even thicker silicone liners although more comfortable didn't help.

As much as I hate the wheelchair ("I feel trapped in a body that doesn't work properly", I can relate to that) I'd sooner keep what's left of my legs and put up with it until we find an agreeable solution that doesn't involve removing more of my legs. Think long and hard about the long term effects of having another joint removed.

Whatever decision you come to you'll have my fullest support,at the end of the day we all have to do what'll work for ourselves and make our days brighter.

Share this post


Link to post
Share on other sites

Hi

Thanks for everyones responses. At the minute I am trying hard not to think about further amputations. My stump still hasn't healed properly and i just don't understand why it just won't heal. I am leaving enough time for the specialist to inform my doctors at my hospital and then I will see what they recommend. I will definitely take on board all of your suggestions because you all know from experience. I will always remember a lady who had physio at the same time as me and she cried because she found it so hard learning to walk ( she was an above knee). It was so upsetting to see her struggle and it made me cry. In the end she decided against walking. Thanks again for all the advice given.

Regards

Share this post


Link to post
Share on other sites

Why don't you ask everyone (everyone who is treating you) why they think your leg isn't healing, Lisa? If they're being a bit 'shy' about answering then assure them that you won't quote them, but that you'd like some honest answers. If you know why you aren't healing, then you can make a valid treatment decision. After all, how can you possibly make a reasonable decision when you don't know all the facts? :huh:

I will always remember a lady who had physio at the same time as me and she cried because she found it so hard learning to walk ( she was an above knee). It was so upsetting to see her struggle and it made me cry. In the end she decided against walking. Thanks again for all the advice given.

I know I've had more time to practice than most here & that I'm a bit of a 'tough old bird' sometimes, but...for goodness sake, it's not that hard to walk with an AK! :glare: It is difficult, but it's definitely do-able...with an AK it's a case of 'practice makes perfect'. :)

Also, what you have to remember about fitting rooms, Lisa, is that you don't know what other medical/emotional/social problems the other person has. So, you see someone trying to walk and you naturally assume that they're just like you, yet most of the time they're not.

I've spoken to you & I know you've got that 'get & go' that you need to start walking with an AK (if needed). I've also watched you on that video clip...up there, singing on your son's birthday (it was you, wasn't it? I mean I'm not mistaking you for someone else, am I? :huh: ). Anyway, you don't see that very often in fitting rooms. ;) You looked pretty mobile to me. You're a single amp & I think you'd be able, with some practice, & the right equipment, be as mobile as you were before your accident...even with an AK. :)

Now, girl, go and ask those questions and make sure your leg gets the best possible treatment (whether that means having an AK or not) so it can heal. ;)

Lizzie :)

Share this post


Link to post
Share on other sites

Hi

Thanks again everyone. I have been told that the skins not healing as its delicate and could possibly always breakdown. I was told this from the start but as I had no magor problems from last November to April of this year, I just thought that my skin was fine and wouldn't give me any problems. Everything was fine until I had my second leg, it must have been a little too tight and I ended up with the stump just covered in blisters. I have spent so much time in my wheelchair trying to get it to heal but when it has healed it's come back again. Another issue I have is that I have nerve damage and can't feel when things are going wrong. I constantly check my stump to make sure its ok and am conscientious about keeping it clean but it makes no difference. When I am wearing my leg I'm the new me and don't generally feel sorry for myself but when I'm in the wheelchair my mood drops dangerously low and don't even want to go out. I have asked time and time again for help with regards to helping me accept what I look like but nothing has been sorted yet. The way that I see it is that when I am wearing my leg and wearing shorts when people stare at me they are thinking "wow look at her" but when I'm in my wheelchair they are thinking "poor thing". People seem to think that when you are in a wheelchair that you are hard of hearing and I often hear comments like that. I'm just waffling now as I'm feeling sorry for myself as again I'm back in the wheelchair. My plastic surgeon did come up with some alternative suggestions but then had to rule them out. I will keep you informed of my progress.

regards

Share this post


Link to post
Share on other sites

Lisa, the "waiting game" is a rough one to play, especially when they're still trying to come up with a solution... I feel for you!

If it's any comfort, I've just been through a year-plus of skin issues on my "good" leg. Just a really, really bad case of dermatitis in my case, but the pain, itching, and oozing of the blisters that kept forming made me feel miserable and unattractive. It took them forever to find a treatment that worked, and I'm still having to be very, very careful with the skin in that area... but it did eventually heal up. I hope yours does, too!

You know, I spent quite a bit of time in my wheelchair at first... and I still have to use it once in a while. I tried to look at it as having a tool to keep me mobile, rather than as a means of confinement. I also noticed that I got a "different" response from people when I was in the chair... one of the things that helped me through it was allowing myself to speak up and tell them off when they deserved it!

"I've lost my leg, NOT my mind," became a regular response to folks who "talked down" to me -- or worse, talked to the person WITH me, instead of speaking TO me. "Hello... I'm down here!" was another. I said it with as much of a smile as I could muster... but I looked them dead in the eye as I did it. Most of the time, that was the end of the issue!

I hope things settle down for you soon, and that you can find a way to finish sorting out the body-image stuff... it's good when you can feel confident and happy with yourself.

Share this post


Link to post
Share on other sites

Hi Everyone

Since I last posted on here I have made the decision to have revised surgery. It's not been an easy decision but when I weighed everything up I know its the right decision for me. My specialist is waiting for confirmation from my amputee centre with regards to how high he can take the stump, but it will definitely be above the knee. If they advise him to leave as much as possible then I have to have another procedure carried out first. I am really hoping that I don't need this procedure as it will entail inserting a balloon under my skin and having in pumped up once a week for about two months, until it is big enough so it can be used as a flap over the end of the stump. I hope I haven't confused anyone but I don't know what it's called. I'm hoping that the operation will be carried out soon, so I can start rehabilitating and move on with my life.

I would really appreciate any advice from any above knee amputees on how they have coped etc.

Regards

Lisa

Share this post


Link to post
Share on other sites

Hi Lisa,

I appreciate that everyones experience is different, no two amps are the same. You obviously have thought long and hard about it and your limb is causing you lots of problems.

When I read your last post my heart missed a beat, a gut reaction. As an ak who has not managed to get a socket that I could weight bear through, three years post op. Who has probably spent two and a half years of that three years in a wheel chair, my heart goes out to you. Being an above knee is a whole different ball game. (Read some of my posts if you want to know my story.)

I know that you have said you have made your decision and I do understand how difficult such a decision is.

Before your op you should try to meet up with a few above knee amps and at least see an above knee socket and leg set up so you understand the process of walking as an above knee amp...it is so totally different. Try if possible to find someone who is having problems not just amps who climb mountains! I think I was guilty of high expectations when I had my amputation, that it would lead to a better life, less pain, more mobility......it hasn't.....quite the opposite.....there are no guanantees. If things don't get sorted out for me this year then I will have to accept life in a wheelchair.

I guess what I am trying to say is that you need to be as prepared as possible for every eventuality.

I don't want to put doubts in your mind, but I do advise very strongly that you meet up personally with other ak amps. Doctors can answer questions but they can never know what it is like to live as an ak day in day out. People on boards such as this can tell you what their lives are like, what their experiences are; but you will never fully understand until you are an ak in your life, in your family, in your relationships.

The skin stretching procedure is quite common in plastic and neuro surgery, I don't know what it's called either but know what you mean.

Good luck to you, it's not an easy time for you, you are in my thoughts.

Lynne

Share this post


Link to post
Share on other sites

Lisa, that's quite a decision to be faced with... I'm glad you've been able to reach a decision and hope that it will go well for you. I agree with Lynne that you should try and meet with some "everyday" AK amputees prior to your surgery. Actually, I think everyone should have the opportunity to "talk to a real amp" before going through surgery... I know I would have liked it, simply to get an idea of what my new life was likely to hold. Doctors and PTs can tell you that you'll be "good as new," and that can even be true... but it takes another amputee to be able to really explain what "good as new" means.

The skin-stretching is indeed common in a number of procedures... I most recently recall seeing it used in surgery to separate a pair of conjoined twins. If it's necessary, please go with it... it should provide you with some decent, healthy skin on your stump, which would be a good thing.

Share this post


Link to post
Share on other sites

Hi Lynne and Cheryl

Thank you for your comments it's much appreciated. I'm really lucky in the fact that I am part of the Derby Amputee Club who regularly meet up and I have spoken to above knee amputees about there experiences etc. I must admit when I first had my amputation I and those around me had high expectations, as the only person I could be compared to was Heather Mills herself. The only expectation I have now is to be given a second chance to walk. I know I will probably be totally shocked at how much harder things are as an above knee amputee compared to a below knee, but at the minute I have a knee which I don't use as I am in the wheelchair. I am just so grateful that I am being given a second chance at walking even if things are going to be harder. I have brainwashed myself into looking at all the positives that will come out of this and have even started dieting and excercising again, so that I dont have excess weight to carry and that I am as healthy as I can be.

Lisa

Share this post


Link to post
Share on other sites

Sorry, Lisa, I missed your post.

The usual advice for an AK amputation is to ideally leave the leg as long as possible, basically because you have more leverage and it makes walking & fitting easier. However, having said that, you don't want a very long leg as it makes it difficult to get your 'knee centres' level. You really need to discuss the issue with both your prosthetist & (plastic?) surgeon...preferably in the same room, at the same time.

As it's an elective amp, you may (or may not?) want to think about 'saying goodbye' to the bit you're having amputated. If the thought repulses you then, obviously, don't think about it. But, I do know of some elective amps who have gained some comfort from it.

Take care & (((hugs)))

Lizzie :)

Share this post


Link to post
Share on other sites

Hi All

I have now had 4 different Doctors/Surgeons who say that an above knee amputation is inevitable. The only thing that I am finding hard to deal with is that I definitely need a tissue expander. I have had a look at some before and after pictures and the results are amazing, but that doesn't stop me being frightened.

thanks

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×