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subsea88

Surgery scheduled in two days

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Hi guys,

There is probably an existing topic/thread but I'm new to this site so please forgive me.

Basically, I've been dealing with osteosarcoma of my right proximal tibia since January 2013 and live in Scotland. Since then, I've had seven operations consisting of bone grafts, cementations, steel plates etc.! None of these have been successful and after speaking with my consultant this morning, he's decided that the only option left is to amputate my lower right leg. On Thursday (5th June) this week.

This came as a bit of a shock to be honest as it was only vaguely mentioned at the start of the year and I've had no input into this decision whatsoever. Is this common practice? I'm still trying to get my head around things but is there any advice you can offer? What is the procedure like? Typically how long were you in hospital for? What challenges did you find particularly hard? Seriously, anything right now would be hugely appreciated!

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Hi there...sorry you've had this decision "sprung" on you, but for your doctors to have put you through so many operations and then actually recommended the amputation, I'd have to think that it truly is the "best/only" solution at this point.

I'm over on the "other side of the pond" in California, so I hope some of our UK folks can join in here to give you a better idea of what to expect over in your part of the world. I will tell you that you need to work very hard to make sure your medical team is up-to-date on the current theories on pre-/post-operative pain control. If you can go into your surgery in a basically pain-free condition (and remain so for as long after the surgery as possible), it can do a lot to prevent future episodes of nerve/phantom pain, which is a very good thing! This surgery is not one where you want to try and "tough it out" without pain meds...at least not for the first few days.

I'm a below-knee amputee myself, and my experience has been a good one. I was in a lot of pain and facing a life of disability before I lost the leg...and losing the leg turned out to be one of the best things I could have done. After my first year of going through a great deal of changes, adaptations, and waaayyy more prosthetic legs than I'd ever expected, I was able to go back to living a more-or-less normal, active, and healthy life.

I know of folks who were in and out of the hospital within a a day or two, and others (myself included) who spent several days in an acute care hospital and then followed up with several more days in an inpatient rehab facility. Your physical condition and reaction to the surgery will probably play a part in that.

There's this saying about amputees: "Everyone is different." That's a good thing to keep in mind......you can expect to hear some general "guidelines" from your medical team, but a large part of figuring out what to do with prosthetics, physical therapy, adaptations around your house, etc... will have to be sorted out as you go and be tailored specifically for you and your lifestyle.

Over here, it takes several weeks for a new amputee to get their first prosthesis...but I've heard about folks in your part of the world being fitted significantly earlier. During most of your first year, you are likely to spend more time than you ever thought possible getting to the point where you have a good fit on that leg: you'll likely have some massive changes in the volume of your residual limb as post-op swelling goes down and muscles that aren't being used as much start to atrophy. You truly do need to keep up with all of those alterations in fit of your prosthesis. A proper prosthesis makes it much, much easier to get back up and walking again.

One thing to keep in mind: A prosthesis that is fitting properly WILL NOT HURT. If anyone tries to tell you otherwise, they are likely trying to excuse their own inadequacy. Now, it is difficult for a technician to tell how well an artificial limb is fitting, since they can't do so by trying it on themselves: it is built specifically for your body, so you will have to be the one to describe what you are feeling. Brush up on your communication skills, and make sure you feel very comfortable talking honestly with your leg team. These folks will be a major part of your life for many years to come.

After my own amputation, I did OK at home, except that my apartment was not especially wheelchair-friendly. If your living space has obstacles that can be removed, remove them...especially at first. Getting up and down stairs was tough for me at first, and just remembering that I needed to "go slow" and understand that there would be some challenges that would be "easy" for me and others that would drive me mad for months and months was a challenge of its own.

Ask any questions you can in the next few days and, especially, after your surgery. Remember that this is a brand new—and completely unexpected—lifestyle change...there is no such thing as a "stupid" question!

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Hi,

Sorry this whole turn has been thrown at you. It is huge adjustment to get into your head in such a short time. No matter how much you may now realize that this is the only / or best option it is still a tremendous leap. Hang in there, you will keep moving forward but it will be different. Hopefully, without more pain, or fear what could go wrong if you stayed on the course you've been on, but with a chance to live better than you are now.

Reach out to this group. Nothing is too silly to ask. Some one out amongst us all can relate or suggest those who can.

Best hope going forward!

Jane

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Hi Subsea and welcome to the friendliest support group on the planet. I am also a RBK (Right Below Knee) and I live at the opposite end of the British Isles to you in Essex.

Cheryl (as always) has given some very sound advice. In the UK we are extremely lucky that the NHS provides prostheses 'free' (at point of delivery)but unlike USA we have limited choice. Having said that, the service is (usually) wonderful depending on your local prosthetics centre! Over the next couple of years your new best mates are going to be:

your surgeon and his team and the staff on the ward

your physiotherapist

your occupational therapist and

your prosthetist.

You may also have GP and district nurses on a regular basis for a while.

You will have a million questions - ask the forum as well as the professionals as the people on here are experienced in a way the others (obviously!) aren't.....

Don't be scared to PUSH for what you want a bit. As Cheryl says, your leg should NOT hurt: if it does, keep going back until it's fixed and accept it's all going to take time.

What seems daunting today will seem easy in a couple of months time. Every time you think you can't do something you will surprise yourself. But accept you will have very bad days too - just don't wallow in them. I personally think self-pity is the biggest barrier to progress. There are two types of amputees at 'Walking School' - those who use every minute of it to get up and get strong, and those who slump in the wheelchair moaning 'poor me', drinking tea, getting fat and doing nothing to help themselves.

But most importantly, it must all feel a bit overwhelming today - take it easy and don't panic. Take it one day at a time for the moment and just try and relax before your surgery tomorrow - losing a leg is NOT the end of the world and you WILL get past this stage and live a perfectly good life.

When you feel up to it, begin to do some research yourself - I have found The Douglas Bader Foundation amazingly useful. The internet is a wonderful resource: use it!

And keep us up to date with how you get on because we will all be thinking of you tomorrow.

I wish you all the very best

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Hi Subsea, I think I might have replied to you on another forum but welcome to this one too. I too live in the UK and am in England, I am a bilateral below knee.

I think that you will find, in terms of the surgery, that every hospital or surgeon etc., have their own ways of doing things, so things won't be the same everywhere, but think most people are in hospital anything ranging from a few days to perhaps a few weeks, then may go home or be transferred to a rehab ward in the hospital, it is very dependent on individual circumstances and sometimes also how accessible your living accommodation is at home.

Before you leave hospital you probably will have input from an OT, maybe a physio also and when you are home you may be visited by a district nurse, or perhaps an amputee nurse. When your leg is healed and stitches etc. removed you will probably do some amputee rehab, sometimes called a walking school, which is usually at the hospital, Disabled services Centre, or prosthetic Centre. There you will do regular exercises, practice on a pam aide (blow-up/pneumatic leg, which gets you used to pressures of walking) and then be fitted with your first prosthesis. Everywhere is different, but its likely you might attend as an outpatient at amputee rehab two or more times a week for about five or six weeks, but again it varies. After you leave walking school, its really up to you to build up your walking, but, it is a gradual process, but you will be surprised how quickly it all becomes very normal. Like others have said it shouldn't really hurt, might be uncomfortable at first, but you will need to keep a check on the skin of the residual limb and if that looks red or sore, make sure you go back to get the prosthesis adjusted. This is usually normal, so don't be afraid to keep going back until everything is right. You will be able to wear ordinary shoes/trainers etc., but the prosthetic foot will be set up to match the shoe. You might find initially jean type trousers difficult as the first prosthesis might be bulky, so get yourself some baggy shorts, tracky bottoms etc., after a while though the residual limb shrinks down and the prosthesis usually becomes less bulky, so regular clothes usually become easier to wear. You will probably get to know your prosthetic centre and prosthetist very well over the next few years. The first prosthesis is really a basic one to get you mobile, but as your residual limb changes shape you will be made new sockets, you might also be given different components on your prosthesis.

In England most prosthetic centres often have User Groups, that have regular meet ups, newsletters and offer peer support, you might find info about your local Group online or details at your centre, they may even give you a pack at the hospital with information. You can also find info from the Limbless Association (LA) who also have volunteer visitors to give peer support, information etc., if you want this at any time just give them a call www.limbless-association.org , you might also find some useful info here at the Bader limbloss information Centre.com (sorry it is online, but not letting me post the link).

I am sure everyone on here will be thinking of you tomorrow, do hope all goes well and do come back and let us know how you are doing. Always feel free to ask questions.

Good luck tomorrow.

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I can't add much to all the good advice you've received. I had Ewing's sarcoma in the right tibia as well. I had an above knee amputation though - 31 years ago. I didn't go through any of the limb salvage stuff, just straight to the amputation since it was a recurrence and I'd previously had radiation therapy to the leg which causes increased risk of radiation induced sarcoma. It sounds like you are keeping your knee which does make it easier to do a lot of things. Even with AK though I've done great. A lot depends on having a good prosthetist and believing in yourself and your ability to do what you set your mind to.

I had about nine months warning before my surgery and I remember wondering how I would drive. Fortunately I knew another guy who was a right AK and he said you just drive with your left foot. Seemed so simple - why didn't I think of that. I know some people have vehicle modifications but the left foot has always worked for me.

Good luck. Hope to hear how you are doing. It's nice to have a forum like this so you can chat with others. Didn't have this back in my day.

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For 300 USD installed you can have a simple device installed on the cars floorboard, it allows you to drive with your left foot. If I had my knee i am sure i would be using my right leg to drive with no device. I would have just used my left foot to drive as Gibby pointed out but i have size 14 shoes, just wouldn't work.

You can also order this part for around $200 USD and install it yourself. It took me about 20 minutes to get used to it.

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