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Post by eplfan2011 on Oct 31, 2017 14:06:18 GMT -7
I'm a relatively new btk amputee, three months in, I was cast and fitted with a prostetic about a month ago, it seems to fit pretty well and I'm supposed to try and use it for an hour a day to start. The problem is after an hour my stump hurts and I am unable to wear it without discomfort for 2 or 3 days after that. Upon examining my stump with my hands I find that it's fine and it's more numb feeling and the discomfort I'm feeling is phantom pain, regardless of the type of pain it's still demoralising .... Is this pretty normal? ...sorry I have no way of making a comparision as I do not know anyone else who is an amputee any advice is appreciated.
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Post by cherylm on Nov 1, 2017 0:58:30 GMT -7
I'm going to venture a guess here, based on your comment that your leg "seems to fit pretty well"...you MAY still need some adjustments to your socket. You also may just need a longer-than-usual break-in period. You ask, "is this normal?" and the answer is that there are all sorts of "normals" attached to being an amputee. The cliche is that "every amputee is different," and it's a cliche precisely because there's a whole lot of truth in it.
Have you been wearing your new leg for a full hour per day right from the beginning? Have you been trying to walk and carry on normally during that hour right from the beginning? If so, you may simply have been overstressing your stump. If you're so sore after one of these sessions that you're in discomfort for more than a day, there is SOMETHING that's not quite right. If it's that you're pushing too hard, try cutting back a bit and take the leg off before the pain begins. Don't necessarily try to do major activities...just wear it while sitting, stand briefly (like for 5-10 minutes) or take two or three steps and then sit back down and rest the stump. If you can't wear the leg for a full hour at a time, aim to wear it for a cumulative hour: 15 minutes here, rest, then another 15 minutes, rest...you get the idea. When you're feeling comfortable and pain-free on a regular basis, then start increasing the amount of time and the activity level GRADUALLY.
Yeah, I know...that can be very frustrating. But remember: you're trying to train your stump to basically become your new foot, and legs generally don't like that idea.
Now...if no-one's told you this already, you need to know that a properly fitted prosthetic SHOULD NOT HURT. You might feel pressure and even occasional discomfort, but you should NOT have pain on any sort of regular basis. New amputees often go through many, many adjustments to their initial sockets...your stump will undergo a lot of changes in shape and size during your first several months, and if you've had changes in your weight in either direction that can also affect your fit. You can try adding or subtracting stump socks--or even cutting them to different lengths if it feels like you're now smaller at the end of your stump but the socket is still fitting OK at the top. You may even have to adjust your socks a few times a day at first. But if making sock adjustments doesn't seem to help, make an appointment with your prosthetist to see about adding padding or grinding out a spot to relieve a pressure point.
This is all TEMPORARY...you WILL eventually settle in with your new leg and it will cease to be the focus of your life. But it will take your body some time to get used to the whole idea. So hang in there and keep asking questions!
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Post by eplfan2011 on Nov 1, 2017 7:59:40 GMT -7
Thank you for the pointers Cherylm they have made me stop and think. I wore my prostetic last night and after a while took it off after it began to hurt. After examining (Rubbing and probing with my fingers) I found no painful spots no red marks no rubbed skin, in fact apart from being a little sensitive it was in good shape, I'm now convinced the numbness and pain is due to PP trigged by wearing the prostetic. I'm going to try wearing it but mostly keeping weight off it and see if I can try and desensitize it. Maybe as you say my nub has to learn this is now what the new Norm is... Thanks for taking the time to answer my questions...
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Post by stonecutter on Nov 4, 2017 19:58:59 GMT -7
Hey - just one suggestion for the self examination after wearing your prosthesis - get a hand mirror and visually look at the bottom of your stump too... you're looking for red pinch marks, lesions, blisters, etc.. The bottom of my stump used to feel like it belonged to someone else - I couldn't feel it until I had my revision surgery 18 years after my initial amputation. So, this was very important in checking skin on my stump.
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Post by eplfan2011 on Nov 28, 2017 11:27:55 GMT -7
Update Went to see my leg guy today and sat down and talked to him. He had me in a elevated vac sys, with having to wear a liner and then a sleeve this was seriously restricting my range of motion,plus if I needed to add a sock dropping my pants to do so was impossible (no I don't want to be messing around doing that in a public toilet lol). A seal in liner, getting rid of the sleeve was out of the question because I'm only 4 months in and nowhere near stablized in size. We decided to go to a pinlock system which will give me more flexibility and allow me to add or subtract socks on the fly more easily. When I'm stabilzed and not fluctuating in size we can revisit the elevated vac sys with a seal in sleave. I hoping I have more luck with this system as I was struggling with the other.
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Post by stonecutter on Nov 28, 2017 19:09:53 GMT -7
Nothing wrong with a pin-lock system. I have one as we speak. I've never had a vac system, although they intrigue me, I wonder if I'd be able to pull it off given my tendency to puncture my sleeves so easily. My best prosthetics made use of pin locks. Love them.
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Post by cherylm on Nov 30, 2017 1:35:28 GMT -7
I spent several years in pin-lock systems and was absolutely fine with them...I got introduced to elevated vacuum suspension about five years back after being asked to serve as a fit model for a workshop on how to cast and fit a suction socket. I must admit that I like the vacuum suspension better, but I'm sure that it would not have worked for me in the early years when I was still having radical volume changes. Pin-lock was great for me then...I hope it works well for you!
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Post by eplfan2011 on Nov 30, 2017 9:57:42 GMT -7
Well a great turn of events, so happens the Ossur rep turned up at the office wanting to demo their lastest scanning software and I happened to be there for casting,to cut a long story short I got scanned by the rep and they are going to comp the whole leg!.... Sent the files to Florida to be carved and I will have a complete new pinlock system on Weds FOC .... Can't believe my luck 😆
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Post by eplfan2011 on Nov 30, 2017 10:07:24 GMT -7
Always felt secure in the elevated vac sys but the deal breaker for me was the outer sleeve it was so restrictive in so many ways. when I have shrunk and stabilized I'm pretty sure I will go back to it but with a seal in liner. For the meantime I'm sure the pinlock will just make acclimatizing to wearing a prostetic easier.
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Post by stonecutter on Dec 1, 2017 9:47:45 GMT -7
Wow - a free leg? Lucky you! Good job on being in the right place at the right time!
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Post by eplfan2011 on Jan 3, 2018 12:05:28 GMT -7
Well I'm back in a elevated vac system, seems like my nub is way too sensitive to tolerate the umbrella in the bottom of the sleeve. I've progressed some though this past month, I'm wearing my test socket for a minimum of 6 hours a day some days 8 to 10 but still using crutches 90% of the time in conjunction with the prostetic. I'm tolerating it a lot better but still going numb and hurting if full weight bearing for any length of time, the Dr sent me for an ultrasound to check my blood flow in my leg but as of writing i haven't got the results back yet. His consensus is it's either blood flow or nerve pain, but at least I'm vertical even if I'm having to use crutches with it, hopefully things continue to improve even be it slowly.
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Post by stonecutter on Jan 3, 2018 15:46:44 GMT -7
Honestly not surprised about the crutches. I had crutches for 3-4 weeks before "graduating" to two canes, to one cane to finally free of assistive equipment. Hopefully your results come back negative for issues. Thanks for keeping us up-to-date!
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Post by eplfan2011 on Jan 3, 2018 17:17:02 GMT -7
I guess what's annoying me Stonecutter is that I'm told I have a great gait and balance and I feel very confident when walking unaided but my damned stump is super sensitive even 5 months after surgery it goes numb and then gets pretty painful, but there are no pinch or marks from poor fit or anything like that. Very fustrating as there's so much to do and see lol.....
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