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Hi I am a new amputee

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Hi my names Sue and as of last April I became a double below knee amputee at the age of 54 (well Im 55 today actually). Im so pleased to have found a site of like minded people, being able to get advise, and perhaps I can offer some support too. My amputations are the result of an ongoing illness called Raynauds & Scleroderma a rheumatic illness, which can affect any part of the body. But for me that has been lack of blood flow to my extremities, I have also had 6 fingers amputated over the last decade.

Thats the horrid bit out of the way. Now lets keep positive

I am getting on with things and I will not let anything get me down I do give myself stiff talkings to, now and again! With my families support I intend to live on my own again when I have adapted my new bungalow. Having my life back after so much pain I can honestly say, having my legs off has been a blessing. Now I know that isnt the same for everyone especially loss of limb after trauma. I am walking again unaided indoors but a stick outside for a short distance. I have been lucky because my stumps healed beautifully, fingers crossed it stays that way (well not my fingers!)

Well its really fantastic to meet you all

Sue

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Hi Sue,

Welcome to the forum, there a few bi lat bka here, hopefully they will pop in soon.

You sound like you are doing well and have an excellent attitude and that will take you far in this journey.

Stick around and share your experiences.

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Hi Sue and welcome to the forum... There are a few others here that are bilaterals as well.

You sound great and very upbeat.. I am glad that things have went so well for you under the circumstances..

Enjoy your time on the forum, we look forward to hearing more from you....If you have any questions, please ask..

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My name is Mike and I am a LBK amputee. I lost my lower left limb in a motorcycle accident on 09/18/2009. It was traumatically amputated during the accident. I've had two revisions but have managed to save my knee. I also sustained broken pelvis, broken Left scapula and dislocation of my Right shoulder which relsulted in a massive RC tear. Total reconstruction. Broken bones are healed. Shoulder is on its way back to normal. A couple more months of physical therepy should do it. I am going to get my preparatory prosthesis this Friday. I'm a little nervous. I here stories of blisters and general pain.

Me: I live on California's central coast since August 2008. I lived in Eugene, Oregon for 28 years where I raised my kids. I am a young 51 year old. I mean, very athletic and competive. I used to race mountain bike. Up until my accident, I rode regularly at slightly under a race pace, haven't raced since 2003. I'm a hiker and backpacker, I spend time on the beach regularly. I would like to play in the sand and surf occasionally. I love human powered sports like sea kayaking, and gym workouts. I'm a guitarist in a rock band. I work in a California State Prison teaching furniture building and manufacturing to inmates. (The inmates need skills when they get out to not wind up back in prison).

As you can tell by now, I want to resume my quality of life as close to what is was before my accident as possible. Motorcycles will not be a part of my future. It was on my bucket list to ride Harley before I die. I did it for over two years. It was a mid life decision that almost ended my life. The ending result certainly changed my life and the lives of my loved ones and co-workers.

I have been researching prostheses' and components. I have explored a site called MTB Amputee amoung others. Very resourceful. Wow, there's a lot of options and didn't know where to start. I have put faith in my prosthetist to steer me in the right direction as far as getting the leg parts that will get me to where I want to get back to, as far a physical activities. He ordered a K2 foot. The Endolite Mulitaxial. After my research we decided to go with OSSUR Vari Flex. A K3 flex foot. He felt I would probably grow out of the K2 pretty fast. I hope my insurance will approve it! It is substantially more pricey.

That's my story. Any suggestions on comfort and prevention of blisters, etc. would be greatly appreciated. Although I am a detail oriented person and experienced in life and physical activity, I am very new to this chapter in my life. I want to be proactive in quality of life. Not only for me, but for my family and friends.

Thank you in advance. Sorry for the long intro.

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Hi, Sue...just another "welcome" here! We do have a good group of people here, and it sounds like you'll fit right in, with your attitude. :smile:

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Hi Sue

Nice to meet you here. I am also a double below knee amputee, as a result of a road accident ... that was forty years ago ... and I live a pretty normal life ... so don't worry its all do-able. You sound like you have done brilliantly in quite a short time, keep those positive thoughts going. Anything you want to ask feel free to ask on here or send me a message.

Ann

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Welcome to Sue and Mike. There is a ton of information on this site. I've been a member for almost 6 years now. Lost my left leg BK in April, 2004.

There will be days when your leg bothers you. There will be days when your leg hurts. Some days it will really hurt badly. Most days you won't even know it isn't real. Enjoy life. Get the proper equipment for the activities you enjoy. It can be an insurance battle at times, but fight for it.

When you have a question, post it. Most of us have already experienced what lies ahead for you.

Neal

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My name is Mike and I am a LBK amputee. I lost my lower left limb in a motorcycle accident on 09/18/2009. It was traumatically amputated during the accident. I've had two revisions but have managed to save my knee. I also sustained broken pelvis, broken Left scapula and dislocation of my Right shoulder which relsulted in a massive RC tear. Total reconstruction. Broken bones are healed. Shoulder is on its way back to normal. A couple more months of physical therepy should do it. I am going to get my preparatory prosthesis this Friday. I'm a little nervous. I here stories of blisters and general pain.

Mike,

Welcome to the forum as well.....You have been the only person since I became a member 6 years ago, to have a traumatic amputation, and all of the injuries I had. It was like reading my own list of injuries, minus the brain injury.

I wear an Ossur LP Ceterus foot. I think that your CP was right, most likely you would of out-grown the other foot fairly fast. I did. Living and working on a farm, when I got started walking around, it didn't take too long to out grow my first foot. You sound about as active as my son is. He mountain bikes, lifts weights, plays ball, rides and builds motorcycles..all besides taking care of his business

Living in the United States, has any one put you in touch with the Amputee Coalition of America?

Likewise as stated before, feel free to ask any questions, usually someone will have an answer, or at least some input to your question...

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Hi, Mike, and here's another "welcome!" You must have been posting while I was, as I missed your intro..........

We have some very, very active members here...including at least one fellow who does motocross and cross-country bike racing. Lots of "bike people" around here, along with many others with highly active hobbies. You'll get lots of advice on getting your life back!

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Welcome to the club Mike and Sue, hope you enjoy your time here.

Ps You can count me in on the "traumatic amputation biker" club. :ph34r:

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I had forgotten about you dave, I'm sorry.... :blush:

I wasn't discounting anyone... it's just the first time someone had listed almost all of the same injuries and as many as I had with accident...

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I had forgotten about you dave, I'm sorry.... :blush:

I wasn't discounting anyone... it's just the first time someone had listed almost all of the same injuries and as many as I had with accident...

I am also a tramatic motorcycle amputee. Lost my left leg above the knee in Aug 2005. I also had a broken left shoulder, 4 broken ribs, 2 stress fractured vertibrets, broken left wrist, broken left hand thumb, broken pelvis, completley severed femoral neck (which is being held togeather with screws). Not to mention the damage to my knee and bones in the lower part of my leg which was ampututated. I honestly feel that if I had not been wearing a helmet I would have died. But there is life after amputation.

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Hi to you both and welcome to the forum, I look forward to reading posts from you. :)

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I had forgotten about you dave, I'm sorry.... :blush:

I wasn't discounting anyone... it's just the first time someone had listed almost all of the same injuries and as many as I had with accident...

No worries, I understood what you said about the having almost all of the same injuries as Mike. I just wanted Mike to know that I was a former biker also and lost my leg at the time of the accident too. :biggrin:

"Discounted". Like 25% off? :laugh::laugh::laugh:

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Just another motorcycle rider who lost his left leg in the accident, July of 2005. Gee, there's more of us than anybody thought? ;-)

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Thank you all for the welcomes and encouragement. I'm guessing that I will find my through this change in my life. It's nice to know that I can utilize a forum such as this for a rich resource.

Any tips or warnings for wearing a brand new leg would be greatly appreciated. I'm may get mine tomorrow, if it comes in on time. I'm excited to get some freedom back and to see from an adults' height. I am equally nervous about the trials associated with being a first timer.

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Mike, you may not want to hear this, but rule #1 for a first-legger is "do NOT overdo it." You'll most likely be given advice on how long to wear the new leg each day and what you should expect to be able to do with it. This advice is likely to sound very silly to someone who is used to being active. Believe it anyway.

Adjusting to a prosthesis will take some time...using it means learning to walk with a whole new set of muscles and bearing your weight on a part of your body that's not used to being weight-bearing. If you try to progress too quickly, you'll find yourself suffering setbacks that will only hold you up in the long run. So take it slow-but-steady...basically, your first year will be about learning how to function, learning what a good-fitting leg feels like (hint: it should not hurt), and figuring out what, if any, adaptations you'll need to make in order to get back to doing favorite activities. Just hang in there, ask any questions that occur to you, and you'll reach the point where you're "fine."

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What Cheryl said is true, take it slow and easy. The simple act of walking isn't all too hard as long as you are on smooth, level ground. Your brain still thinks a foot is there. The phantom sensations are a good thing here. The phantom pains are never good. The smallest incline or decline can really be hard. You have to retrain muscles to do new tasks. If the toe of your prosthetic foot hits on a stone, no matter how small, it will stop you in your tracks. Going up and down stairs step-over-step will take some time. You'll need to think about every step you take.

All the retraining of muscles just takes time. You anatomy has changed also. The vascular and lymph system has been rerouted. I can walk without thinking about the ground beneath me or the ramps and steps. I still prefer steps to ramps.

One of the hardest things in the early days is keeping up with sock management. Your stump is going to change radically in the first month or two of using a prosthesis. It is best to add socks by the clock. If you wait til it hurts, it's too late. Simply add a one-ply sock every 2-3 hours to keep a snug fit in the socket. There was one time where I couldn't get into the leg because of swelling. I elevated the stump for 15 minutes and finally squeezed into my leg. I was already running late for work. I had to add a 3-ply sock within 30 minutes of donning the leg.

These are just some of things I can remember. It's scary in the beginning, but very doable.

It is great to finally walk again. Have someone take of picture of your face as you take your first steps. It's usually priceless.

Good luck.

Neal

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Thank you Cheryl and Neal.

Sorry I haven't replied sooner. Busy weekend. Lot's of errands and band practice. It's different and more difficult to set up and play guitar from a wheelchair. I'm getting through it though. Can't wait to stand again!

Your experienced input into my new adventure is invaluable and greatly appreciated. My leg came in too late on Friday to be able to be fit. I have an appointment at 11:30 this morning. I know now, more of what to expect and what to do to prevent a setback. The advice on taking easy will be hard for me, Cheryl, but I will heed your warning and follow any instructions my prosthetist provides me. The last thing I want is more setbacks.

I will report back after my appointment today. Kind of nervous, yet excited.

Thanks again,

Mike

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As Neal and Cheryl have both stated..... don't over do it...

I did, in the beginning, just by accident and ended up not wearing my leg for several days, and not doing pt for over a week. That is harder than not having it in the beginning. :glare: What I did find out, when I finally could return to physical therapy was that it had set me back further than just the time that I was out, unable to wear my leg..

The bad part is, your walking, feeling good, feeling partway normal again, and it was just so easy to over do it.. It happens without even thinking..

I'm sure that once you have been given your leg, and all needed supplies, you will go home and wonder, "now what the heck do I do with all of it?" Don't let it overwhelm you..

When you don't know, or understand throughly, just ask... It's hard to remember all of the nuances in the beginning, and there are a bunch of little tricks to learn along the way..

Are you totally exhausted from today yet? :smile: Boy, does it bring back memories!

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I'm not exhausted but I am a little sore. I walked in the parallel bars, holding them. Then I graduated to walking freely. I even walked to the restroom and back unassisted. My wife was spotting me though. If felt good to walk again!

I got home and gave my limb a rest. A little red but no sores. I went to PT in the wheel chair, carrying my new leg. My therapist had me put it on to look at my gate. She was thrilled that I finally got it. She was not thrilled with some of the things she was seeing and I then explained my complaints:

My stump had continued to shrink in the seven days it took for the leg to come in. I went right to the bottom of the socket. Leg guy had me put on a single ply silver strand on my skin, then my gel sock then a three ply sock, then the socket and finally the gel tube that creates the suction fit. I felt good for a while. Then I noticed that the knee cut-out is not semetrical to my knee. Some pressure points in the wrong places: outside knee bone, inside edge of my knee cap, and the bottom front of my shin. I suggested to my PT therapist that I go back to the Hanger. She said that she has a close working relationship with Randy, the leg guy and that we'll all get in the same room together. She still wants me to wait a week before doing that.

I'm instructed by her to wear it an hour, even if i don't walk on it. Then, take it off for a couple of hours. Monitor my skin condition while it's off and then repeat. She explained what to look for.

All in all, I a little disheartened. I don't think I have a proper fit. I understand that my stump will change and socks will be the difference. I just don't think the socket is molded correctly, or at least trimmed right. Sock management is now a major part of my life. I guess I'll just suck it up and deal the hand I have been dealt. I really don't have a choice. I do hope that I'll be refit.

I'm wearing the leg now. The more I look down at it the more I convinced that it is wrong. Out of alignment and the knee is just terribly cut wrong.

Mike

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These days will be the most frustrating for you Mike.... and sure as ever, it will seem like your whole life will revolve around your leg.. It does get easier. I swear it will..

2 things.... Talk with your CP.. he is guy who built the leg... an open and honest relationship will always serve you best with whoever builds and maintains your leg..

It is normal to have the thoughts that this leg is built wrong.. It doesn't mean it is..It will change constantly for a while.. remember that.. from day to day and hour to hour.. sometimes, you will swear it is minute by minute...as long as you are wearing the leg, and more so, while you are walking on it, you are pushing fluid and swelling out of your limb. It took me four and half years to quit shrinking. My limb was re-attached and then amputated a few days later.. It has massive swelling from the re-attachment. Now, it swells, and shrinks but nothing like it used to.. I have even learned a few tricks with the things that I eat to make it swell and the things to stay away from when getting ready for a fitting for a new socket.

Second, before you let frustration get the best of you.. call your CP.. even go in and see him again if that is what it takes..

I don't know what style of socket you have, so it's hard to tell you just what way to adjust, but your CP can.. listen to him....he is the one that tweaks it.. It's most important.. Understand that your gate can change according to fit of your socket as well.. What you might have had correct in his office, might of been different at pt, just because of the way your leg is fitting.. It doesn't mean it is wrong.. The fact that you say you are in so far into the socket, leads me to believe that you are dropping down into the socket...

If all of you can get in the same room at the same time great...but... do talk with him anyway...

It sounds like beginner frustration right now... we have all been through it....

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Go back then. You don't have to accept a prosthesis that doesn't fit. It is a hard job for a prosthetist to fit us. It is largely up to us to tell them how it feels. It is their job to translate that into what needs to be done.

The alignment of the leg is how the socket sits on the pylon which is then attached to the foot. They should be able to align the leg just from sight while watching you walk. You want your foot under you at the shoulder width. If it's too far in, you'll trip over your own foot. If it's too far out, you'll walk like a duck. QUACK QUACK!!!!! If it's too far forward, you're apt to do the splits. If it's too far back, it won't be able to catch up with you. Your going to fall. Then comes the part that is totally up to you as the wearer. The amount of "TOE" that feels comfortable. I like a lot of toe because it tends to store more energy to propel you. If you don't have enough toe, you'll feel a premature rollover that can lead to a fall. If you have too much toe, you'll feel like your climbing uphill. I always get the foot to a perfectly smooth rollover with no flat spots then have him give me a fraction more. A poorly aligned leg can lead to many problems including sores on leg, aching back, hip and knee. It will also lead to premature failure of your shoes, liner and other prosthetic parts. I will tell you more about my alignment practice at a later date. It is far too early to tell you now.

If your socket needs some trimming around the kneecap, that's an easy fix. They just sand down the trimline in the area til it's more comfortable.

The socket isn't going to fit well after a few weeks. I've worn up to 20 plies of socks just to keep a snug fit. It is usually the norm to build a new leg when the patient is wearing 10 plies of socks. As long as you aren't damaging the limb, try to use this leg til you reach the 15-20 plies of socks. Then your next leg will last longer.

Always remember that your first prosthetist was assigned to you by your surgeon. If, for any reason, you don't think he/she is right for you, GO SOMEWHERE ELSE!!!!! This is the life that you will live forever. Why waste any of it on someone who doesn't listen to you.

Keep on keeping on.

Neal

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