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Neal

I'm about to become disabled.

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I've been an amputee for over six years, but really don't feel disabled any more. I rely on my leg for everything. I only take it off while sleeping or showering. I've been one of the "lucky" amps who has been plagued with infected hair follicles, cysts, boils or whatever you want to call them. They are behind my knee and can be extremely painful. The last one I had rendered me unable to walk until I expressed it. The pain of doing that almost made me pass out, but it is almost instant relief.

One of the advantages of attending the ACA conference is being able to obtain all kinds of information at one place. My legman didn't know what to tell me so I went in search of those who could. I talked with a guy who has had the surgery to remove the scar tissue that forms from repeated cysts. His was 8 years ago and he hasn't had a cyst since. I also was able to talk with an orthopedic surgeon and a different legman who both agreed that they needed to be surgically removed.

I saw my primary care doc on Mon, Sept 13. He agreed saying that he feared the infection getting into the bone and causing a higher amp. OH NO!!! He referred me to a plastic surgeon. I met with him yesterday. I'm not one to put things off. When he said that surgery was necessary I asked how soon.

The surgery will be next Wed, Sept 29. He will try to keep the incision as high as he can so that it doesn't come into contact with the trim lines of my socket. He says there is plenty of loose tissue available to make a nice closure.

The worst part of this and the reason for writing is that I will be out of my leg for 4 weeks. That is disabling. I can work one of my jobs by sitting on a stool. It won't be the way I like to work, but it will be work. I'll have to sub my paper route out as I can't carry newspaper while on crutches. The worst job will be around the house. I'm a caregiver for my ailing wife. It won't be easy caring for her while using crutches. I'm not that good with crutches because I don't use them a lot. I also have a walker and an extra wheelchair. I'm sure I'll be using all of the above.

If any of you have suggestions, please let me know.

Neal

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Hi Neal,

I have had issues with cysts too. You will not be able to wear your leg until the wound heals. Take my word on that. Could you posiibly have a college student come in and help you for a couple of weeks. That would be helpful for you and would take your mind off of things so you will heal properly. I have found that the aluminum forearm crutches work the best for me... I'm Sorry you are having this issue with the cyst, But it has to come out.

Jerry

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Tough news, Neal...but if it solves the cyst problem, it will be worth it.

I agree with Jerry...some part-time assistance at home could be a really BIG help while you're working out the whole healing process. After my initial amp, I had to rely on an awful lot of people, who all joined in to either help me do--or just DO--a wide variety of tasks. Each little bit of assistance was a godsend!

One of the things I was able to take advantage of was the nursing program at our local adult school. I made too much money to qualify for any sort of home aid, but I didn't make enough to actually pay the going rates for home aid through one of the "usual agencies." I was able to employ an adult school nursing student who was willing to work only a couple of hours a day, three days per week. That got me someone who had enough experience to help me with things like medications (I was also temporarily blind at the time), showering, assisting with exercises, and running occasional errands and helping with chores. It kept me going until I got both my prosthesis and my sight back.

I'll bet that you manage fine with your own temporary personal disability, but some assistance with some of your wife's needs might be a good thing for both of you.

Good luck with the surgery...let us know how it goes!

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Sorry to hear that you're going through this problem my friend. If my feeble mind is correct, you have an upstairs in your house.

1. Don't try to ascend or descend stairs in a wheelchair. (that sounds silly, but don't be a daredevil)

2. Don't even try it with crutches until you are very comfortable using them. Broken bones take longer to heal than most surgical wounds. If you must go up and down, do it on your rear end.

3. Keep the walker next to the bed for when you need to make a run.

4. Have some Advil or Tylenol on hand, because your shoulders and arms are going to take a pounding that you're not use to.

5. Find a work stool with a backrest, wheels and even consider a seatbelt. Once again, falling ain't fun.

6. Call your insurance company and explain the situation, they should be able to help with some assistance.

Hope all works out well for you.

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You crack me up Kerry. I had never thought of trying to take the stairs in a wheelchair. Maybe in another life.

Thanks all. It will be a long 4 weeks, but I intend to do what I can to make the best of it. Stairs on the butt. Crutches at both ends.

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You crack me up Kerry. I had never thought of trying to take the stairs in a wheelchair. Maybe in another life.

Thanks all. It will be a long 4 weeks, but I intend to do what I can to make the best of it. Stairs on the butt. Crutches at both ends.

My church helped me alot after my amputation. Maybe a local nursing school there in Tulsa like the OU College of Nursing can give you an idea or maybe a nuring student can be hired to help out.

Ed

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Neal - I'm sorry you are having to go through this, but I agree that you are doing the right thing..especially with the plastic surgeon who will take very good care of you. I never think of myself as disabled either, but since I'm bilateral, if I need to rest up, I do have a wheelchair in the garage since crutches won't work well for me :) With having one good leg, you will be better than I would be on a stool, but your other leg may be sore, so that could make a big difference... I remember right after surgery before I walked, having to use the wheelchair to make the bed, vacuum, etc...it's alot of work to be in one doing housework!!! Call whoever you might need to help you at home and at work too. You have to take care of yourself.

I'm so glad you got information at the conference that helped you. I will be thinking about you and keeping good thoughts that everything will go well...let us know how it is going..good luck, you will do GREAT!

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Sorry to hear you are going to be off your leg = it is going to be difficult although worth it in the long term. I can only echo what some of the others have said - is there anyway you can get some temporary help (a nursing student or health and social care student)for a few hours a week just so you don't exhaust yourself trying to do things in a way your body isn't used to?

Good luck and keep us posted.

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I am sorry to hear you will have to endure this, but happy that it will make things better with your leg. I agree with everyone that you will need some help, atleast for a couple of weeks. Take advantage of your local hospitals, sometimes in these fall-winter months they have what we call budget cuts, this means workers hours are cut to save on money. these workers often would love to come to ones home and do daily needs for a small price.Best thing to do is go and ask around.

I do all my chores from a wheelchair right now, and yes it takes longer, harder,but i get them done, and i don't have the fear of falling. Im a recent aka so im not so good in my prostetic yet. I agree with what was said about crutches and stairs, they don't mix that well. i was trained for mths on crutches to get ready for prostetic and when i had to not wear it for the past two weeks i fell up the stairs. atleast i didn't go down,which i easily could have.. so i use walker to walk all the time now, and wheelchair to do chores and stuff. Our arms are very easily going to wear out, and that would be bad since we do depend on them so much more, so i prefer to sit in wheelchair and save them all i can. I do sit and scoot on my bottom to go up and down stairs now if needed. not pretty but gets me there. I had a thearpist in the hospital that i worked with, tell me that when i could stand on my one foot hold both arms straight out to side and then bring them into the center of my stomach,(kinda looks like the karate kid crane thing}then and only then was i SOMEWHAT safe on crutches,,,

Again good luck , hang in there, and if i can help in anyway please let me know. AKNURSE

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Hi Neal, sorry am a bit late on this one as have been offline.

I was in a bit of a similar situation as you this time a couple of years ago, as I had a revision so was also off my legs for a while, like you I was getting lots of infections and had it done to prevent infection getting into the bone and causing more problems, though I did lose a few more inches of bone but have to say the plastic surgeon did an amazing job with the reconstruction so it all worked out pretty well, and worth the two or three months I ended up having off the legs. Mine wasn't to do with cysts behind the knee, but as a teenager I used to get loads of those when I wore metal legs, they often kept me off the legs and on antibiotics, so know they are not nice... very painful.

(Like Flip) I am bilateral and so, crutches weren't an option but used my wheelchair. At first the strange thing was not having a prosthesis to wear on that side, but I found I very quickly got used to it and got a lot more proficient with the wheelchair. My home is more or less geared up so I can use my chair, I can cook and clean, iron, hoover etc using the chair ... the bit that caught me out was the access to my home, normally if I left that prosthesis off I could manoevere myself and the chair up a step quite easily ... what I didn't appreciate before the op though was how weak I would feel, on return home from hospital and for several weeks after the op and didn't have my usual physical strength to lift myself around. I was in hospital for eight days and bed bound for most of this time hooked up to an epidural, so might not be the same situation for you.

I found just my lack of strength for a few weeks was the main hinderance, so my advice would be take any help (and pain meds) offered, and ask for any help that you need that isn't offerred ... plus give your body/leg a chance to heal properly .... look after yourself and don't rush it .... its worth that extra bit of healing time so it doesn't open up again when you start walking.

Hope all goes well and enjoy the initial enforced post op relaxation !!

Ann

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Well, Neal, I think we have both covered this ground on the phone and there isn't much more that I can think of except possibly checking with your insurance about some daytime assistance for your wife. That was a good suggestion by Kerry... who knows, it doesn't hurt to ask.. I plan on talking with you either this evening or tomorrow....Hang in there my friend ...... :wink:

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Neal, there isn't much to add that hasn't already been said. I think they have you covered pretty well....only thing left is for us to come out to see you. How about that. Follow the Doctors orders!! :smile:

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I've ordered an IWalk Free. It's a hands off walking aid. A friend of mine uses one and likes it a lot. I'll let you know more about it when I have something more to say.

Tomorrow is the day. I still don't know what time. UGH. I like to eat so I'm hoping for a morning time. Get it over, get home, EAT!!!!

Thanks for your thoughts everyone. It helps.

Neal

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Good Luck!!! I am sure it will be well worth it once it is all said and done!!

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I went in at 6AM and got home around noon. I was in some pain til around 3 and no pain since. I'm a side sleeper and found my left hip was killing me when I woke up. Slept too much on that side. Now my chest and shoulders are hurting until I get used to using crutches again. Go back to doc on Mon for dressing change.

Life on crutches is a B..ch, but I'll get used to it before the 4 weeks is up.

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I went in at 6AM and got home around noon. I was in some pain til around 3 and no pain since. I'm a side sleeper and found my left hip was killing me when I woke up. Slept too much on that side. Now my chest and shoulders are hurting until I get used to using crutches again. Go back to doc on Mon for dressing change.

Life on crutches is a B..ch, but I'll get used to it before the 4 weeks is up.

Neal, What is the IWALK Free?? Is there aweb site?

Take care,

Ed

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I received my IWalk Free yesterday afternoon. I put it together and started getting used to it. I will not be trading in my prosthesis for it, but it does get me around with free use of my hands. I did my commercial paper route this morning by myself. It was exhausting, but it worked. I'll post some pics when I get around to it.

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Well I started using my prosthesis on a limited basis last Thur. I had to refit my second socket in order to get one big enough. I'm already down to socket #3. It's been a long time since I had to carry around all these socks. I can go from 0-8 plies in a matter of an hour. Things are so much better since getting back into my leg. 7 weeks is a long time without it.

Maybe I can get into yet a smaller socket in the next day or so. This has been quite an experience. Not one I wish to repeat. I hope the results are worth it.

N

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Lots of luck Neal...hope everything is going to be OK. I know this has been a 'long haul' for you & family. :smile:

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I can only imagine (thankfully) what a change it has been for you Neal, as eag says, hope everythiong is going to be OK and it's been worth it.

Good luck, thinking of you.

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Good to hear that you're starting to walk again, Neal...I really have a hard time picturing you staying still for long!

Let me ask you...do you physically have all your old sockets in your possession? I ask because my earliest sockets are still rattling around, but they're "filed" at my prosthetist's office. Now that I've moved 400+ miles away, I'm thinking that it might be a good idea to ask that they be sent up here...either to me or to my HMO's prosthetist in this part of the country.

I doubt that I'd ever have enough swelling to go clear back to socket #1, but reading that you had to revert back to earlier models is something to think about.............

Hope you have a good and speedy recovery from this point on!

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Well I started using my prosthesis on a limited basis last Thur. I had to refit my second socket in order to get one big enough. I'm already down to socket #3. It's been a long time since I had to carry around all these socks. I can go from 0-8 plies in a matter of an hour. Things are so much better since getting back into my leg. 7 weeks is a long time without it.

Maybe I can get into yet a smaller socket in the next day or so. This has been quite an experience. Not one I wish to repeat. I hope the results are worth it.

N

Neal,

Back in June 2006 I had stump surgery and was out of my leg for 3 plus months. It was hard not being able to walk. However, since the surgery I have had over 4 years of none of the fungal problems and pain in my stump. I have used the leg every day since the surgery that had been put off for many years. Looking back I made the right decision as the problems are now gone. Hopefully, in a few months your stump problems will be history!

Best of luck,

Freddy

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Glad to hear you are starting to walk again - it must have been so frustrating. Here in the UK you have to hand back the old leg when you get a new one so we wouldn't have previous sockets to fall back on!

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Thanks guys and gals. I have all of my sockets except the first. I guess it was donated by my prosthetist. I took them all to a meeting a couple of years ago to donate to Limbs for Life. The guy forgot to take them when he left and I brought them back home. I just keep them all in my closet. I had to had a foot, but I have a few of those also.

I was so swelled that even socket #2 was too small unless I wore a shrinker while I slept and got into the leg straight from bed. It did shrink rather quickly. I've already moved into socket #3. I tried #4 last night, but it was way too uncomfortable. It was uncomfortable even 4 years ago. My goal in all this is to get a new socket by the end of the year. I don't know it that's possible, but I will certainly give it a try. I've met all my deductibles this year and the socket would cost me nothing.

Cheryl-I know you live in an apartment, but I think you should be in possession of your sockets. They are yours after all. You just never know when you might need them.

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