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Post by stonecutter on Oct 18, 2011 21:35:10 GMT -7
I apologize for not being very active lately. I've had some stuff weighing on my mind that I didn't want to think about... I don't know if I mentioned it, but I had another bout of cellulitis in March. I ended up in the emergency room one evening on IV antibiotics with a side of morphine when my leg swelled to the point where I couldn't get the end of my stump into the mouth of the socket. That wasn't a very good day. That was on a Friday. The Monday I ended up in the amputee clinic in front of my rehab doc, my prosthetist, a nurse and my PT talking about the situation. My doc wondered if it was time to consider revision surgery. I said I'd be willing to TALK about it, but not sure about going through it... As a backgrounder, I've mentioned this before, but my stump is about as non-typical as you can get. There's a skin graft and several 'crevasses' that are problematic, since I also have no sensation in them. I often develop a problem within the crevasses and don't know about it until I take my leg off in the evening... At any rate, I'm nervous about the surgery - especially since yesterday (Monday) I had an surgical consult with an orthopedic surgeon to discuss. He's all gung-ho to go. I figured it'd be strictly a plastic-type surgery. Just close up some crevasses, take out the skin graft, and maybe I'd have some extra scars, but - it'd be okay. He tells me that to make me a decent and proper stump - he's going to have to trim up to 2" of bone and re-wrap all the tissue. The way I see this is that we're starting all over again. It's just like a brand new amputation with recovery from zero. So the question is - is it all worth it? How long can I expect to be out of commission? Should I expect the same as the first go 'round? I kind of told my rehab doc that I wouldn't be interested if we're cutting bone, but am I passing on a better quality of life here? I want to give you guys the choice of checking out the photos, so I'm giving you links, rather than posting the photos. Click if you like. If you are weirded out by stumps that look like the creature from the movie Tremors - then maybe click elsewhere. Pic 1Pic 2Pic 3 |
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Post by barclay on Oct 18, 2011 21:56:15 GMT -7
Hey Stonecutter - sorry to hear about your situation. I can relate to it - I should have a tooth implant done, but even the thought of facing surgery makes my blood run cold. I think it might be a kind of trauma related reaction.
You know I am not a doctor, right ? I can't imagine that a stump which looks like your does now would ever not be problematic - I also have nerve damage and no feeling and I hope that no one suggests that it's possible to 'be careful and check the stump regularly for wounds and redness'. It doesn't work - I mean it works for weeks, months, whatever, but one day you miss it and then you are there again with the blood poisoning - been there, can you tell ?
Which leaves you with really two options it seems to me - either have the surgery when the stump is healthy, or wait till it's a critical situation and they have to operate when it's already infected.
At least that's what I can share from my experience.
Did your doctor say if it would be possible to try leaving the bone and only operating on the flesh ? I think I'd prefer to try that at least.
My heart goes out to you.
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Post by cherylm on Oct 18, 2011 23:49:21 GMT -7
Oh, dear....Stonecutter, I have a single teeny, tiny "dimple" on my stump, with FULL sensation, and it's still been a recurring source of problems of various types. Your pics do look like a major problem waiting to happen. I have a friend who deals with cellulitis (without having to deal with an amputation) and it's not a good thing. Again, I'm not a doctor, but some degree of revision might be a good thing.
I agree with Barclay that the possibility of "cleaning up" the soft tissue while leaving the bone intact would be preferable. But then, I have a fairly "shortish" stump and would really hate to lose any more bone. How long a stump do you have? Would losing the additional 2" of bone leave you so short that fitting would be difficult? Would it be possible for you and the orthopod to consult together with a prosthetist on that front?
I know that a revision sounds like "starting from square one" again...but in reality it may not be that bad. At this point, you at least know what "recovery" entails, you know what goes into fitting and using a prosthesis, and your stump would be (hopefully) in better shape and less likely to develop irritations or infections than it is now.
It's not an easy decision.............I wish you the best in making it.
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Post by allenuk on Oct 19, 2011 0:20:22 GMT -7
That's not a choice most of us would welcome.
My thoughts are these: surgeons, orthopaedic or otherwise, see surgery as a Good Option. (Ask a pharmacist, and he'll give you pills; ask a physiotherapist, and she'll give you exercises; and so on).
I would look for alternatives, maybe on the lines of aggressive treatment of your stump - washing it even MORE regularly, finding some strong ointments to rub into it to ward off infections, those sort of options. Maybe even some sort of dressing to go directly onto the odd areas, which again would need very frequent changing.
I don't think it's a complete start from zero. At least you'd know about prostheses etc., but you're right, the initial post-op recovery would just be what it was before.
What was the rehab doctor's opinion? Or, for that matter, the nurse's? I do trust surgeons, and most of the time they do a great job, but they do tend to favour their speciality over alternatives.
Allen.
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Post by ann- on Oct 20, 2011 6:16:19 GMT -7
Hi Stonecutter
I think I had very similar revision surgery to what they are suggesting to you, and looking at your pics, your stump looks a bit similar to how mine used to look though I had and still have skin grafting over the front of the stump also.
I finally went for the revision because like you I was getting a lot of infections and the stump had become painful plus it was also getting impossible to make new sockets ...I'd actually stopped wearing a conventional PTB type leg, and gone on to an old fashioned type with thigh corset, so didn't take weight through the stump some 30 yrs earlier, but even they had become difficult to get made and also were not working for me. So for me I'd gone down every avenue I could prosthetically, and visited several rehab consultants and surgeons, and in the end seemed the only way forward.
What they did with my leg was that a couple of inches, I think of bone came off the end and they used the good tissue etc on the side of my leg to reconstruct the underneath and back, done by a plastic surgeon.
It really was a lot less traumatic than I had expected, though in a lot of ways, for me it was very much like starting again ... and also quite emotional, but in some ways memories were helpful as I knew things would be ok and I was very impressed that the techniques these days were so much improved. I had a GA and epidural which stayed in for a few days, along with painkillers which worked brilliantly.
I was in hospital for about a week and then had to rest at home with my leg kept bandaged out straight for another couple of weeks.
I had some rehab for about five weeks, though am bilateral and had to get used to wearing a different type of leg and using muscles I hadn't used for years before, so was walking with crutches about 3 months after the op., though it took me about 9 months to get back to normal really. But this will probably be much quicker for you.
So I was lucky, and everything worked ok, but know it is a very hard decision to make, things are different here in the UK but I saw a couple of rehab consultants and surgeons before I made my decision, I was also looking for a hospital with low infection rates, so it might be good to talk to more than one surgeon and see what they suggest.
If you can, also get the prosthetists to liaise a bit with the surgeons, I wasn't sure on the length of your stump from the pics, but it looked a bit shorter than mine was when I had mine done, and I know there are optimum length requirements and did read what you said about having the bone cut, so gather this is a concern, not sure if you have asked the surgeons whether they could they graft tissue from elsewhere to give a functional shaped stump without cutting shorter, don't be afraid to ask questions.
I remember going in with a list of questions, but the surgeon I chose to do it had answered most of them before I asked.
Best of luck with your decision, I know its not an easy one to make.
Ann
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Post by stonecutter on Oct 20, 2011 6:51:25 GMT -7
Thanks folks. I am going to request to attend another amputee clinic to ask questions of my rehab doc, nurse, prosthetist, etc... You guys are right - this will likely have to happen sooner than later. (And for some reason, I'm not getting any younger...) My dad keeps telling me to make sure this happens before I turn 40 (I'll be 37 in December) - he says that all hell starts breaking loose in your 40's. (  ) |
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Post by ann- on Oct 20, 2011 8:34:18 GMT -7
Lol .... Stonecutter .... wouldn't be worrying about age too much, 37 is no age at all ..... I was in my early 50's and recovered fine ... but my 50's have been better than my 40's! <grin>
I think you are right going back to talk to ask questions ... its a big decision to make and you want to make sure that you are making the most informed decision you can, whether you have it done or not.
Mine was discussed five years before I had it done, but the time wasn't right for me then and thought I had time to wait, and I did, so don't really regret that.
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ann58
Female Member 
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Post by ann58 on Oct 20, 2011 10:31:19 GMT -7
Thanks folks. I am going to request to attend another amputee clinic to ask questions of my rehab doc, nurse, prosthetist, etc... You guys are right - this will likely have to happen sooner than later. (And for some reason, I'm not getting any younger...) My dad keeps telling me to make sure this happens before I turn 40 (I'll be 37 in December) - he says that all hell starts breaking loose in your 40's. ( ) Nah, I'd say around your 50's! I also have a friend that has cellulitis in her arm. She has to really watch...one minute she's fine & within a 1/2hr. she is sick as a dog; but her arm is swelled most of the time....and like U she ends up at the hospital for 2-3days. I would try to hold off surgery as long as I could, but that's just me...feel I've had enough surgery to last years., but then again, maybe you'd be better off getting it done ASAP. |
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Post by ann- on Oct 20, 2011 23:42:18 GMT -7
Thanks folks. I am going to request to attend another amputee clinic to ask questions of my rehab doc, nurse, prosthetist, etc... You guys are right - this will likely have to happen sooner than later. (And for some reason, I'm not getting any younger...) My dad keeps telling me to make sure this happens before I turn 40 (I'll be 37 in December) - he says that all hell starts breaking loose in your 40's. ( ) Nah, I'd say around your 50's! I also have a friend that has cellulitis in her arm. She has to really watch...one minute she's fine & within a 1/2hr. she is sick as a dog; but her arm is swelled most of the time....and like U she ends up at the hospital for 2-3days. I would try to hold off surgery as long as I could, but that's just me...feel I've had enough surgery to last years., but then again, maybe you'd be better off getting it done ASAP. I think it all depends on your situation and how much the infections etc impact on you. As you know I am bilateral and I have been having probs with my other stump, no infections though, just difficulty getting new one made again, mainly due to the very pointed shape....and I must admit after 18 months of failed fittings on that side, I have approached them about revision on that one too. At the moment they are telling me 'no' as I am wearing current leg ok ...ish .... so I am going with them on that at the moment. But I think if I got to a stage where I was last time, then I would definitely get it done. |
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Post by allenuk on Oct 21, 2011 0:30:48 GMT -7
30s? 40s? 50s?
You wait till you're in your sixties... it's not so much times' wingèd chariot drawing near, it's more a question of it starting to overtake.
A
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Post by ann- on Oct 21, 2011 3:13:35 GMT -7
30s? 40s? 50s? You wait till you're in your sixties... it's not so much times' wingèd chariot drawing near, it's more a question of it starting to overtake. A Lol have a bad back this week and feel like that chariot is a lot closer already Allen <grin> |
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ann58
Female Member
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Post by ann58 on Oct 21, 2011 17:52:25 GMT -7
30s? 40s? 50s? You wait till you're in your sixties... it's not so much times' wingèd chariot drawing near, it's more a question of it starting to overtake. A NAH, U are but a youngster and Ann also. I really don't think I'm ready to get aboard @ this time {LOL}  |
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Post by ann- on Oct 22, 2011 5:47:54 GMT -7
30s? 40s? 50s? You wait till you're in your sixties... it's not so much times' wingèd chariot drawing near, it's more a question of it starting to overtake. A NAH, U are but a youngster and Ann also. I really don't think I'm ready to get aboard @ this time {LOL} Haha Ann, like your thinking .... don't think I have any plans to get aboard either .... they are saying 60 is the new 40 so bags of time yet! |
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ann58
Female Member
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Post by ann58 on Oct 23, 2011 10:11:50 GMT -7
Ann.... sure hope U have that right!!
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Post by barclay on Oct 26, 2011 0:38:32 GMT -7
How are you doing Stonecutter ?
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Post by stonecutter on Oct 27, 2011 7:16:29 GMT -7
I'm doing okay... I'm waiting for my appointment with my rehab doc, PT and prosthetist to ask some serious questions. From that point a good chat with my wife and we'll make a decision.
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Post by ann- on Oct 27, 2011 9:12:15 GMT -7
Check with them about the length of stump below the knee you will be left with stonecutter and whether that will be viable to still wear a b/k prosthesis, if there's any issue over this, perhaps get referred to a plastic surgeon and see if they can graft tissue etc. from elsewhere and whether that would be an option.
Another option might be to try various liners, not sure if you have done this already, or perhaps think about a thigh corset type (no.8) prosthesis where weight is taken around the thigh, top of leg.
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Post by stonecutter on Oct 27, 2011 10:12:59 GMT -7
... perhaps think about a thigh corset type (no.8) prosthesis where weight is taken around the thigh, top of leg. I never knew such a thing existed... |
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Post by ann- on Oct 27, 2011 12:15:06 GMT -7
... perhaps think about a thigh corset type (no.8) prosthesis where weight is taken around the thigh, top of leg. I never knew such a thing existed... Does over here Stonecutter, and am sure have spoken to others in States etc who use it, am sure your prosthetist will know about it. This was the type of leg routine given to b/k amps wayback before the PTB came in and was one of my first ones. But I wore it for about 30 yrs to protect skin graft and keep my knee, in that time new techniques came in which allowed me to have the revision & reconstruction, and I now use a PTB with a liner. |
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Post by cherylm on Oct 28, 2011 0:47:10 GMT -7
Stonecutter, I know that there are still thigh corset prosthetics here in the US...saw a fellow walking out my CPO's office just the other day wearing one and carrying a "spare." I'm sure it must still exist in Canada...sometimes "older" can be "better"........
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Post by ann- on Oct 28, 2011 1:04:32 GMT -7
It has some disadvantages, though think sometimes it still fills a gap when people are unable to wear the conventional PTB type.
For me they were what I virtually began on and had some advantages in that because the weight was taken at the top, there was lot less pressure on the stumps and I didn't notice the shrinking process so much, so it was all more gradual.
Nowadays I am noticing that a lot of b/k amps here in the UK, anyway, start off very well and then start shrinking and have difficulties then getting appointments, getting new sockets made etc. and it sets up a spiral of events and they sometimes end up not walking or walking much less than they had been a few months before.
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Post by stonecutter on Dec 13, 2011 7:01:12 GMT -7
Appointment with my rehab doc today. Day of decision? We'll see. I'll find out what to expect for recovery, etc... Will let you know what I hear.
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ann58
Female Member
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Post by ann58 on Dec 14, 2011 11:09:56 GMT -7
Appointment with my rehab doc today. Day of decision? We'll see. I'll find out what to expect for recovery, etc... Will let you know what I hear. Stonecutter; I looked @ your pic's again & have to tell U {second one kinda' looks like a lamb w/his ear over his eye} 3rd. is an animal w/mouth & eye..... .........looks very different than a normal stump, but not disgusting. Wonder what the reasoning is for taking 2 inches of bone? Hope things went well for U yesterday. |
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Post by stonecutter on Dec 14, 2011 16:46:12 GMT -7
I had my clinic appointment yesterday afternoon. I met with the same PT that was in charge of things when I was in there in 1994, my leg guy and the rehab doc.
She had a look at my stump, and we had a look at my xrays that were taken when I met the ortho surgeon in October. She measured the length of my tibia at 14cm – which is about 5.5” She said she’d be shocked if he had to take 2” off and suggested that he may have been using a worst case scenario. She feels that he’d be able to do what he needs to do by taking 1” at the most off.
She estimates that I would (POSSIBLY) be able to recast at 4-6 weeks after the surgery and that would mean I’m back on my feet at 6-8 weeks if you include for the manufacture of the leg. The other that makes this easier is that there won’t be physiotherapy required like before, and the actual healing wouldn’t be as involved as the first time, since “the blood vessels have already rerouted their pathways…” (I didn’t even think of that…)
The ortho surgeon put me on the waiting list when I met with him – hence the consent forms. The folks at the rehab hospital don’t typically tell you flat out – “You need to do this” or “If I were you – I’d do this…” but I got the rehab doc, when we were alone to tell me that if it were her, she wouldn't hesitate. She also pointed out that the infection I had in March was very serious and totally out of control by the time I went to emergency – I was a 18-24 hrs away from having to have surgeries… which is why I was on IV antibiotics rather than the pill form that took care of the problem in previous instances. I knew I was in trouble but didn’t realize it was that bad at the time.
I've been googling the ortho surgeon's name a lot this morning and it sounds like he’s a really skilled surgeon – there’s a bunch of papers he’s written out on the internet about traumatic injuries. He's a member of the Canadian Reserves and very actively treats wounded soldiers.
So, we’ll wait and see when the surgery date is. Pretty sure I’ll need to follow through with this.
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Post by cherylm on Dec 15, 2011 1:28:11 GMT -7
Sounds like you've got a good team around you, Stonecutter, so that's a plus.............
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