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Post by cherylm on Sept 19, 2011 23:52:46 GMT -7
Hi, Penny...Is this appointment with a surgical specialist? (I'm not sure about terminology in Canada.) If that's the case, I can suggest a few questions for you. First, what is their experience with performing amputations? Are they comfortable with the procedure, or do they "avoid" it because they feel it represents a "failure" to "cure" a patient? Ideally, you're looking for someone who is well-versed and comfortable with performing amputations, but who is not necessarily "eager" to do one. Is the specialist an orthopedic surgeon, a vascular surgeon, a plastic surgeon, or some other specialty altogether? My own amp was performed by an orthopedist who had extensive experience with amputations...but I've had a number of people say that they felt a plastic surgeon provided the quote-unquote "best service."
Another thing I'd want to know is what is the surgeon's "theory" for amputations might be. This is only my personal opinion, but I'd prefer that, if there is any chance of any part of my limb "going bad" in the future, that it just be taken at the start so that I can get on with life. I've seen too many folks lose a single toe...then a couple more toes a few months down the line...then the rest of the foot...and then, ultimately, a portion of the leg. Multiple surgeries, continued ill health, and constant attempts to fit various prosthetic devices...I'd much rather face a single operation to remove all possible malfunctioning/defective tissue and then go back to living life.
Now if this appointment is NOT with a surgeon, just let us know!
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Post by gerberadaisy on Sept 20, 2011 17:45:07 GMT -7
Thank you Cheryl, and yes he is an orthopod who specializes in feet. He was recommended to me by the prosthetist I met with. He said that he saw the best work done on amputees, coming from this specialist. I guess he sees a few...!! As far as his attitude toward amputation goes, I have read an extensive article he wrote and I do remember him saying there he thought that in some cases amputation was not as bad an option as some people may believe.
But thank you for bringing those things to my attention. Indeed words of wisdom... I'll keep you posted.
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Post by barclay on Sept 20, 2011 21:29:48 GMT -7
Ask him about what sort of post-op pain control he uses - I had a complete nerve block (I don't remember the details, I'm sorry) and I had/have little trouble with phantom pain- I've heard that the phantom pains are worse the more post op pain you have. Holding you in the light, Cynthia
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Post by gerberadaisy on Sept 23, 2011 11:20:20 GMT -7
So apparently I have a choice of a fusion, a Symes amp or a BK amp... He did ask if I would see a colleague of his who is an orthopod and runs an amputee clinic. A very resourceful man, to quote his words, to see what he thinks of my foot too. He did tell us it was a bit of a mess in there... surprise, surprise...!! I guess I just wait for the next appointment now... And yes, those phantom pains do worry me Cynthia.
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Post by allenuk on Sept 23, 2011 12:53:52 GMT -7
Penny: I've heard poor reports of both fusion and Symes, but times might have changed. You need to speak to someone who's had one or the other recently. Most surgeons in the UK seem to dislike fusion because it is the worst of both worlds: you end up with a very poor gait, probably pain from leg and ankle, and no great benefit. Symes is slightly different, and worth a Google! Oh, never mind post-op pain relief for phantom pain avoidance - it's PRE-op that's vital. You have to go into the operation with your brain believing that you are NOT in pain, at all, and this is achieved by high doses of pain relief for a few days pre-op, and then an epidural morphine drip starting at least 24 hours pre-op, i.e. you have to be in your hospital bed a full day before the op, and plugged in to a drip. A few years ago this was anecdotal; now anaesthetists are starting to see sound medical logic behind it, thank heavens. I had the epidural, etc., and have never had a phantom pain (no guarantee I'll never get them yet, but 6 years is a good start). Not sure if there's anyone on this forum with a Symes. There are plenty of other forums, of course (not that we want to lose you, but you do need good advice). One that I used to go to was: www.amputee-center.com/forum.htmlUsed to have a good turnover of messages, and a wide range of experiences, so worth registering. Otherwise googling amputee forum should give you plenty of choices. But do keep us informed, whatever happens. Best wishes, Allen.
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Post by gerberadaisy on Sept 25, 2012 20:52:17 GMT -7
My annual update... or so it seems...! It has been exactly a year since the last post on this thread. I come to let you all know I have taken the bull by the horns and have surgery booked for 11th October for a Symes/BK. Not quite sure how I feel about it all... No, the truth is more along the lines of the less I think about it, the less I will worry myself...!! (i.e. let me bury my head in the sand a little longer...!!!)
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Post by allenuk on Sept 26, 2012 1:01:40 GMT -7
Good to hear from you again, Penny.
Keep your head in the sand as much as you like, as long as you pop it out to remember what I wrote above about PRE-OP painkilling, and its relevance to longer-term avoidance of phantoms.
Do let us know how it goes in a couple of weeks - we'll be thinking of you.
A
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Post by cherylm on Sept 26, 2012 23:48:50 GMT -7
Penny, I'll "second" Allen's advice on the pre-op pain control. I didn't know about that issue at the time of my own surgery...I just got very "lucky" in a very odd sort of way and was in so much horrendous pain when I was admitted to the hospital and they were considering whether to recommend amputation to me that they just plunked me on massive amounts of pain-killers for several days before and a few days after the surgery. The result has been that I've never had any sort of major problems with phantom pain.
You've done a lot of research, so if you're inclined to stick your head in the sand now that the surgery is coming, you'll probably be OK...you've already done a lot of what you'd normally need to be doing pre-op. Just remember to come up for air and prepare to start working hard after the surgery so that you can get back to living as soon as possible.
And do keep us posted!
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Post by gerberadaisy on Jan 17, 2013 16:19:24 GMT -7
Update... as promised. Well, surgery is done and dusted! I was fortunate enough to heal without complication, and got my first prosthetic in time for Christmas, actually, Dec 12th. Best Christmas present I could've asked for! It has been just over a month I have been working with it now, and I am now convinced I did the right thing!! It is not without perrils of it's own, and am not yet pain free, and heck this thing is heavy and bulky to learn to use. But already, I see improvement....
Just a couple questions for any recent amps out there, as I know that with time things tend to fade into the background and one doesn't remember details so well. How long does it take for your prosthetic to feel like it has become a part of you? And I guess everyone is different here too, but I get a lot of pins and needle sensation, sometimes shooting pains in my stump. This had all settled right down untill I began weight bearing on it. So, yes am still on some meds, but is this a normal reaction to early weight bearing, and how long does it take to settle down? I know it's only been a month, and I want to be able to do everything yesterday, but I guess it takes time to build up endurance and tolerance and all that good shit...??!!
I hope everyone had a great Christmas and that 2013 will be an awesome year for all of us! Take care.... Penny.
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Post by ann- on Jan 31, 2013 0:39:20 GMT -7
Glad it all went well Penny.
Regards how long to the prosthesis feels like part of you, I'd say, probably when your stump has settled down and when the socket is comfortable. From what I remember from my revision a few years ago, those sensations went on for some time, but you gradually build up the tolerances and it becomes less painful and more normal. As you continue and find you are more able to do the everyday things again whilst wearing it, you think less about the leg and more about the everyday things.
Like you say as you begin to put more weight through it can upset the nerves etc a bit, but remember its still early days and the stump is still healing inside and that bit of leg is not used to taking the pressure it is now having to ... so Baby Steps !!
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Post by barclay on Jan 31, 2013 9:37:53 GMT -7
I think it was about year before I wasn't thinking about the prosthesis and just walking. My leg shrank really quickly and I had 4 sockets it the first year - something like that anyway - it is a while ago. Im glad that things went well for you and that you were home for Christmas !
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Post by allenuk on Jan 31, 2013 13:33:29 GMT -7
It certainly takes more than a month, Penny. In my case I was walking fairly well in 3 or 4 months, but it was still a case of 'Me walking with a prosthesis' for a long time after that. Eventually, you get to forget - it really all depends on how comfortable you can get it.
Yours sounds as if it is going in the right direction, and I hope that in a few months you WILL start to forget you're wearing a plastic leg.
A.
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Post by gerberadaisy on Mar 3, 2013 14:56:07 GMT -7
Wow. Thank you for that input. Certainly made me feel a little better. I am struggling at the moment with other peoples perception of where I am at. It seems they see you walking, no cane/crutches, no obvious prsthetic (it's winter... I'm in jeans mostly)... and they have the expectations of a normal person. I just should be able to do everything, which in turn gets me in a tizz thinking maybe I should be able to be doing more..... I have to learn to put the brakes on, and just say I am not there yet! Sometimes I want to yell it out, but, well you know. I guess they would think I was losing the plot as well as my foot!!
I am heading toward a new prosthetic now, but I am hearing different stories about when it actually happens. I have heard it should be done when you reach 10 - 12 ply of socks, and some say as much as 15. I was also wondering if that is something that settles down too, or will I always be adding 5 - 6 socks a day?
Your input is much appreciated and I thank you in advance. Regards, Penny.
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Post by ann- on Mar 4, 2013 1:00:14 GMT -7
Hi Penny, I think what you are saying is very true about peoples expectations, I get very different reactions depending on whether I am wearing legs not wearing legs, having legs unconvered etc. etc.
I think for you what you achieve will be very dependent on how the prosthesis itself is fitting and that may vary from day to day and that probably will always be the way. The trouble with that is and what people don't always understand is that some days you will be able to do more than other days, and if the prosthesis is not fitting you well you might feel like you are back to square one and not doing much at all.
Sorry, couldn't remember whereabouts your location was, but regards the socks, I am hearing many amps in the UK being told about not returning back to their centre for refit of socket until they are wearing 'x' number of socks, and quite often 'x' is quite high number, which, years ago, just wouldn't have been acceptable. Be careful with this, as after a couple of socks you tend to lose definition in the fit and when your stump is shrinking the tissue shrinks but of course the boney bits don't. I was always told years ago when I started out to go back as soon as it had become more uncomfortable all the time, if my skin looked red or felt sore, especially if you were hitting the bottom.
Ideally, you shouldn't really be adding five or six socks a day, although in the early stages you are catching up with the shrinking process and because of the way prosthetics are now made and need to fit its probably the only way to keep walking on it. I think also whether you will be always doing it, depends on the level of service provision where you get your prosthetics from, and it does vary wherever you go. Generally though, I would say go back and let them know as soon as the leg gets uncomfortable, or gets red, even in one thick sock, especially if you are in the UK because once you are out of the rehab stage there is often a much longer wait for sockets etc. so you need to time in that you might be waiting a month or so for appointments for casting and fittings.
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Post by cherylm on Mar 4, 2013 1:21:00 GMT -7
Hi, Penny...welcome back! I'm glad to hear that things are going well. Your experiences sound pretty much in the "normal" range...I can say that I still occasionally struggle with other folks' expectations influencing my own opinion of my abilities. There are so many, many parts of my life that are at a fully able-bodied level that those activities I'm not good at can confuse everyone around me, which can get me doubting myself!
Try to remember that this whole amputee business isn't something that will suddenly be "over and done with." You'll keep adjusting, growing stronger, more certain, and more skilled...people will more-or-less "forget" that you're dealing with a prosthesis...you will more-or-less do the same...and then you'll go to tackle some new activity and you'll feel weak, confused, and uncertain of how to go about doing the activity! It doesn't "mean" anything, except that you have not encountered that particular activity before...and after you take a minute to figure out how to go about about it, you'll get back to normal life. If the folks who have "forgotten" your situation are folks you deal with regularly--family, friends, co-workers--try to come up with a mild, good-natured reminder...and if they still don't "get it," go ahead and yell at them a bit! Eventually, you'll all get used to it!
As for the whole "new prosthesis" business, I've always been told that I need to get in touch with my leg guys for a new socket whenever I hit the "ten-ply" level. That happened fairly quickly for my first few years and then began to slow down radically, until I can now go two or three years between adjustments. I had my last adjustment about a year ago...at that time I no longer needed any socks, and I'm only just now reaching the point of thinking about adding a sock again. You'll get there too, in time.......just hang in there!
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Post by gerberadaisy on Mar 9, 2013 16:11:46 GMT -7
Wow!! All I can say is "Do you guys have any idea how valuable your advice is to a newbie..?" Thank you so much Ann and Cheryl for those kind and wise words. You have no idea how much you have helped me. I can only hope to one day be able to return or pass on such wisdom. I took your advice and went back to my prosthetist, (I am in Canada Anne) and explained that despite many socks I just wasn't getting a great degree of comfort for any length of time. So, he took my liner and put another thin foam layer inside it, and brought it back, but still no luck. Turns out I do need a new socket after all. He thought it way too soon as it's only been 3 months, but, well, I guess everyone is different. I think I have at least learnt that indeed, you do feel like you are back to square one with a poor fit. So, we will recast on Wednesday next week. Should have a new leg by the following Monday. Yippee!! Then I can get on with my rehab. I guess the moral of the story is that there usually is something they can do about discomfort, it doesn't always just come with the territory... which is what I was thinking, and feeling sorry for myself because I wasn't meeting other peoples expectations... I am so glad I asked you guys...
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Post by allenuk on Mar 10, 2013 1:13:57 GMT -7
Penny.
Good to know we're making a difference; that's what we're all here for.
Re. the stump changing - it WILL stop shrinking eventually. Some stop in a few months, some take a year or so, but at the end of the process you'll stop needing new sockets every few months. Doesn't seem to matter how fit you are, or fat, or the opposites - stump shrinking goes on its own sweet way regardless. Me? I've got LOADS of excess tissue all over me - except on my stump, which my prosthetist describes as Very Boney. Wish I was, too!
A
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techreaper
New Member
Life is for living to the max
Posts: 5
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Post by techreaper on Mar 26, 2013 12:19:20 GMT -7
Wow! Thank you both for that wealth of information! You've certainly given me heaps to think about. I am going to go do just that, think about all this info, and no doubt will come up with a bunch more questions... I'll be back... Hi penny im not a leg amp but I'm a arm amp. Before I had my hand amputated I spoke to another amputee and also went to limb centre to see what they can offer. i think it's a tough choice you have because your foot works and is living. If there any advise from this speak to the limb centre and meet other leg amps there. Best of luck
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Post by gerberadaisy on Mar 30, 2013 20:07:07 GMT -7
Thanks for your input there Techreaper. I had my surgery in October last year, now just having darned prosthetic fit issues. Got a new prosthetic last week, and it just aint as comfy as my last one...!! Do you wear a prosthetic?
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