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cherylm

Mike's Intro....

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This is the new thread for Mike's intro.....

post Jan 19 2010, 04:30 PM

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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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post Jan 20 2010, 12:46 PM

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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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Neal

LBK-April 2004

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post Jan 20 2010, 01:00 PM

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post Jan 20 2010, 06:31 PM

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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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post Jan 20 2010, 07:13 PM

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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.gif

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post Jan 21 2010, 12:37 AM

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

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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What lies behind us and what lies before us are tiny matters compared to what lies within us.

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post Jan 21 2010, 03:22 AM

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QUOTE (Higgy @ Jan 21 2010, 12:37 AM) *

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

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.

post Jan 21 2010, 07:52 AM

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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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post Jan 21 2010, 01:01 PM

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QUOTE (Higgy @ Jan 20 2010, 08:37 PM) *

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

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.gif

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

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post Jan 21 2010, 03:09 PM

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Welcome Sue and Mike.

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Be Yourself......... Everyone else is already taken.---- Oscar Wilde

There comes a time in the affairs of a man when he has to take the bull by the tail and face the situation. ---W.C.Fields

post Jan 21 2010, 05:19 PM

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post Jan 21 2010, 09:52 PM

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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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... Tom

post Jan 21 2010, 11:33 PM

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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."

post Jan 22 2010, 12:33 PM

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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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LBK-April 2004

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post Jan 25 2010, 04:31 PM

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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

post Jan 25 2010, 06:52 PM

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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.gif 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.gif Boy, does it bring back memories!

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What lies behind us and what lies before us are tiny matters compared to what lies within us.

post Jan 26 2010, 04:19 PM

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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

post Jan 26 2010, 04:47 PM

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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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What lies behind us and what lies before us are tiny matters compared to what lies within us.

post Jan 26 2010, 04:54 PM

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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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LBK-April 2004

post Jan 26 2010, 05:22 PM

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As usual, Neal explained the roll of the foot better than I could of.. He's so good at that!!!!

Reguardless.. he is right, and like he said, call your CP, tweaks are normal.... and often in the beginning.. but they do lessen as the leg changes and gets more stable, which, is a while off yet....

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What lies behind us and what lies before us are tiny matters compared to what lies within us.

post Jan 26 2010, 05:44 PM

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Thanks for all of the advice, you guys. I will contact my CP. Everyone seems to love him. I've only heard extremely good things about him from PT therapists, doctors and amputees in the waiting room. I must have a good guy. He's very enthusiastic and pro active.

I realize that this isn't going to be easy. I am assured that it will get easier. I am just surprised at the discomfort. No matter what, I will hang in there and communicate. I'm going to put the leg back on in an hour or so. I'll load up on socks to see if that makes a difference.

One of my problems is that on the bottom of my shin, the bone is a little swollen still. When I sink down, I get too much contact right in the front at end of the shin bone when I step forward and bear weight on my heel.

post Jan 26 2010, 05:54 PM

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You've already gotten some really good advice from Neal and Higgy, Mike. Let me just add that I received my first leg on a Thursday...and by the following Monday I was calling to make an appointment for a fit adjustment! Your stump is going to go a little crazy in these first months...like Higgy, it's taken me well over four years to reach the point where I have a decent length of time in a socket before my stump changes to the point that I need to be recast.

There is a lot of stuff they can do to adjust your fit, and even a small adjustment can make a tremendous difference. You're not likely to know all the "terminology," but you are the expert on how the leg FEELS. Describe the feeling openly and clearly...you don't have to try and diagnose the exact problems in the fit. That's for your CPO to do. If they try and adjustment and it's not working for you, tell them so. Your input is the best information they have going for them!

This is the time that's going to take a lot of patience, but it will pay off in the long run.

Hang in there!

post Jan 26 2010, 05:59 PM

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Mike, me again. I just read your comment about the pressure on the shin. Getting you up higher in the socket may fix that, but if it does not, ask them if they can grind out a little "pocket" in the socket for the end of the bone. That's been a regular issue for me, and once they started making an actual place for the bone to go, it's made a tremendous difference. It doesn't have to be a big space...just a tiny amount of free space for the bone end.

post Jan 26 2010, 08:04 PM

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Thanks Flip. I didn't mean to take over Sue's thread. I'm new to forum and I am very open to any protocol or edicate issues.

I'm finding a wealth of info and support here. I'm thankful to have come across this forum.

Cheryl, I find that more socks bring me higher in the socket but take up space for that shin bone. I was told that the socket could be ground for space. The funny thing is that when he made the clear test socket, it had space built into it. He made one adjustment to it and broke it. He then molded a new one on the spot and it ended up not having the clearance that the original one did. It was not as tight either. He liked it though. I even expressed those concerns at that time. He felt it was a go and ordered the carbon fiber one. That's the one I'm wearing now...a duplicate of the test socket I had concerns about.

Having said all of that, I'm going to give it an honest go. I'll give it a couple more days and then contact my CP.

Seems the more I wear it, the better it feels. Still taking it off frequently and checking my skin. I have to admit - after nineteen weeks of wheel chair and hopping, I'm digging standing on two legs. I can see things from an adult height again!

Thank you all,

Mike

post Jan 26 2010, 11:13 PM

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Mike,

All of the advice given in this thread is spot on! I am only 8mo post amp and on my 3rd different socket, my first one lasted only about 6 weeks. I ended up switching CPO's because my first one would not listen to what I was telling her about the socket. That relationship HAS to be open and honest for you to get the best out of your equipment. I didnt even see I was being ignored by her until one day my PT lady said that things werent suppose to be this difficult! I switched and it was the best choice I could have made for the health of my limb. If your CPO is worth you being his/her patient they will not mind you coming back in to atleast look at your leg! They have no idea how it is feeling if you dont tell them! Again I am still faily early on in the process as well, but I can already see that I have learned alot and am glad that I asked the questions when I had them. Just as a reference about CPO visits I just got my third socket last tuesday and today was my third visit since then to have my guy adjust the new socket, fortunately my guy leaves me in the test socket for 7-10 days to ensure it fits perfectly before making the carbon fiber one. Even though I wear the test socket that long there is always some more adjustments that will be needed with the carbon one too. Laws of physics I guess? Stay positive and give your self the breaks you will need early on and things will get better for you. Good Luck!

--------------------

Thank You

Jason LBK

There is a reason the rearview mirror in your car is only 10% the size of your windshield, cant spend to much time looking back. The real show is in front of you.

post Jan 27 2010, 03:46 AM

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I have a really sensitive spot on the outside of my stumpie, I'm a right BK, and my socket is built out around that spot. So whatever you need can be done. It is so hard in the beginning because, honestly, "you don't know what you don't know", and that is a fact. You will become more knowledgeable and know the right questions to ask. I reallly didn't know what to expect in the beginning and feel it took quite a while for me to get there. Sometimes I still go in and say, something's just not quite right. How he must hate that! But he always helps me figure it out. But the more time passes, the "smarter" you'll get and the bolder you will be when you know something's wrong. Hang in there. Just remember - it's not supposed to hurt.

--------------------

Marcia

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Be kinder than neccessary because everyone you meet is fighting some kind of battle.

post Jan 27 2010, 01:04 PM

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What Marcia said is true. You will learn the terminology quickly, but may still not be able to lay your hands on exactly what the problem is. You only know it isn't right.

Walking should not hurt. If it does, STOP until the issue is resolved. Especially if the pain is in the bone.

It's a little early in your walking days to explain how to cut socks, but I will anyway. You are using a simple suction system (not vacuum) with a liner and sleeve. It is normal to sink in the socket as you lose volume. The act of suction compounds that. Take a three-ply sock and cut the toe out. Just enough to get it over the end of your stump. Then cut the top out to where it's just below the kneecap. This will lift you in the socket without binding the distal end of your stump or your knee. I had more knee trouble than distal problems before I was told to do this.

Hope this helps. Keep moving on.

Neal

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Neal

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post Jan 27 2010, 04:42 PM

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Whoa, Neal, what a great idea! I'm a very detail oriented person, fine woodworking as a proffession all my life. Have a passion for hands on mechanics as well. I tweak everything I own from mt. bikes, Harley, electric guitars, cars you name it. I'm sure prosthesis will follow.

I am suprised that I didn't think of that myself. I guess I'm too green yet. As soon as your said "cut the toe...", I knew where you were going.

I will wait though. I want to talk to my CP. I was reviewing my warranty info with Hanger and I don't want to do anything to compromise the warranty. I have a 20% out of pocket investment and I'm almost maxed on the insurance cap. Can't afford more out of pocket $$$.

I think my CP will work with me just fine. He has a very good reputation. I just need to get in to him. I have some transportation issues. I drive, but I need someone to get my wheechair in and out because my shoulder is not yet healed.

Thank you mmarie and Madleggs. Your input is very appreciated. I will get there. Guidence and support like I am receiving in this forum is way beyond my expectations. With this kind of input, I can't go wrong!

Mike

post Jan 27 2010, 07:08 PM

IP: Private | Post #36 |

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From: Bath, IL, USA

Member No.: 786

Like Cheryl and Marcia, I too had a spot that had to be sanded out. Mine came from a pin site where the foot was re-attached before the amputation.

I don't blame you for not "tweaking" yet.. You have a ways to go yet, and sometimes, minor little tweaks can have huge effects.. I'm sure your CP will help all that he can. It just takes time, patience and communication..

Being upright again is great, isn't it!!!!!!!

--------------------

It's not what you look at that matters, it's what you see.

What lies behind us and what lies before us are tiny matters compared to what lies within us.

post Jan 28 2010, 06:55 AM

IP: 76.215.159.160 | Post #37 |

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Joined: 16-January 10

From: California, Central Coast

Member No.: 2680

Being upright is so awesome, Higgy.

I saw my CP today and addressed my issues. He felt I was sinking too far down. I have some space where my scar is and a blister developed. That sucks. He gave me a toe sock and some ideas for filling the narrow scar line. I'm on a hour on and 3 hours off schedule now. He didn't want to change anything else just yet. I see him on Friday and he will do some tweaking at that time. I do like him and so does my PT.

Very tired now. Just got home from band practice and I'm beat.

Good night.

Mike

post Jan 28 2010, 12:40 PM

IP: 72.213.174.55 | Post #38 |

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From: Tulsa, Oklahoma

Member No.: 1470

What instrument do you play? What band? What genre of music?

I think I can see you building your own leg some day. I personally don't mess with mine. The most I've done is adjust a little more or less toe. I don't really have a lot of spare parts. I'm in the process of gathering all the older components to donate for the Haitians.

--------------------

Neal

LBK-April 2004

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I'm the rhythm guitarist in a rock cover band. Some of the guys are working on some originals though.

That's a great idea for donating to Haitians. They need all the help they can get.

Who knows, maybe I will build my own leg(s). I do know that I would like to blow the market open to public retail as far as ordering components. There's some technology involved, yes, but not to the tune of the $$$ you have to spend just because insurance and the medical field are involved. That's another topic entirely and being new to all of this, I am not armed (or legged) to take that one on just yet.

I'm having some drainage at the scar line. My CP instructed me to stand 15 minutes and then take it off, clean and let dry for 3 hours then repeat;. The idea is that if it's going to stop draining, then lets get the fluid moving so it will stop sooner than later. I'm seeing my doc on Wednesday anyway so if it doesn't stop draining in a couple days, I suppose I'll be addressing yet, another setback.

I'm continuing to stay positive and optimistic.

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You're right about the $$$$$. As of now, our only option to the high price of prosthetics is Ebay. They deal mainly in used parts. You can find new socks, liners and sleeves on occasion. I pity those without some form of health insurance.

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