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RozM

Roz's Revision

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Hello everyone – I’m back!

The last time I posted (in February) was a couple of days before an appointment to see a reconstructive plastic surgeon about the possibly of him performing a revision of my amputation scar; well, I had the revision surgery two and a half weeks ago, and I have my first post-operative follow-up tomorrow… and it all looks very good!

You may recall that I had an amazingly good Ertl RBK amputation last August (I could run within a couple of weeks of getting my first prosthesis), but the scar was a real problem, causing things to go downhill from such a promising start.

So, I must apologize for my absence; it’s because things went so poorly that I actually gave up on using my prosthesis, and, on the verge of depression, I collapsed myself into work. I stopped seeing my leggist, I withdrew from all things amputee, and concentrated on things where I didn’t feel so damned helpless. It’s perhaps because I had such a good beginning that I found the setbacks so hard to take, and it’s taken this revision surgery to bring me out of denial about the benefits of my amputation; it’s been a tough year.

Following my amputation, the edges of the skin didn’t meet, so the wound healed slowly, and the resultant broad scar had its own thin, weak skin, which blistered really easily. There was also a nerve entrapped in the scar, so I got severe phantom pain with any contact on the middle of the scar, and, following a post-op infection, the scar was adhered to my tibia, so when I walked with my prosthesis, the thinly-skinned scar got dragged up and down inside my liner, causing an almost instant blister. The blisters would appear almost directly above the place where the nerve was entrapped in the scar, but this was no surprise to me – the area which was being scrubbed and scuffed was the area containing the entrapped nerve, so I experienced extreme phantom pain while walking in my prosthesis – ouch!

Because I’d been advised that things might well settle down, I persevered and persevered, keeping my prosthesis on as long as possible and battling the pain, but things didn’t improve. At just over seven months post-amputation, I wore my prosthesis for about 4 hours during a night out (which shouldn’t have been a problem that far post-op), and I got a gigantic blister which kept me out of my leg for nearly 5 weeks. This happened mid-March, and I’d seen the plastic surgeon a month earlier, so I began to really push for the revision. My original amputation surgeon (an orthopaedic surgeon) had offered to revise the scar, but I wanted to consider additional (reconstructive plastic surgery) options, and my original surgeon kindly referred me to two plastic surgeons for their opinions.

Both the plastic surgeons read well on the internet, but Mr. Henk Giele caught my eye in particular – an expert in hand reconstructive surgery, with a special interest in nerves, and a performer of reconstructive microsurgery – so I had a private consultation with him. He seemed confident of fixing my problems: he identified which nerve was entrapped in the scar, and he said he could completely remove the bad old scar tissue and cut the adhesions, and that things could be greatly improved for me. He even agreed to give me a 48-hour post-op epidural, to keep nerve issues at bay – it was music to my ears!

As before, I managed to convert Mr. Giele’s private diagnosis into an NHS referral, and 4th July found me in the Nuffield Orthopaedic Centre in Oxford. This is a brand new hospital built on an existing site with everything transferred over from the old one, and everything was excellent, including the staff. I even got a private room – albeit with one hitch – no remote control for the television! That was frustrating while I was immobilised with the epidural!

The morning of the surgery I thought I’d just mention to Mr. Giele that I occasionally got additional phantom twinges if I pressed on my scar in other areas, and I asked him if he would have a look for any other nerves that might be in the vicinity, and he said he would. For the surgery, I had a spinal block and an epidural, as well as a twilight anaesthetic, so I awoke as the last dressings were being put on, and, noticing this, Mr. Giele looked at me and said, “THREE nerves – three!” No wonder I’d had discomfort!

That night was frustrating – the spinal block took another five hours to wear off, during which time the nurses couldn’t tell what dose the epidural needed to be at; it was originally set at 2 millilitres per hour, and as the spinal block wore off, I found I was in increasing pain, but all that could be done was to incrementally increase the dose until I was comfortable. It ended up at 10 ml/h some 5 hours later, by which time it was 4:00 am, and I’d had no sleep – ho hum! It didn’t matter, as I largely dozed the next day or so away…

I must confess that during this hospital stay, I was a little paranoid about the epidural coming out – as it had done when I had my amputation – so I regularly checked my back to see if the dressings were still well stuck-on. However, after 24 hours – just like last time – the dressing immediately over the epidural line was completely unstuck, and was held in place only by the adhesive tape around it – danger signs! I mentioned it to the nurses, and a staff nurse carefully replaced the original dressing with something more resilient – Bioclusive, I think. This was a huge relief, as I certainly didn’t want a repetition of the agonies of my amputation! With that in mind, I also made absolutely certain that the epidural line connector up at my shoulder was screwed together extremely tightly, as I certainly didn’t want it coming apart, as it had in my REPLACEMENT epidural during my amputation! There were no such worries this time, and the replacement dressings stayed the course.

Two mornings after the surgery, a doctor from the plastics team came to see me. He’d been in on the surgery, and he told me all about it: in addition to the three nerves they’d dealt with, they’d also moved the muscle, so as to keep the incision over the muscle and well away from the bone, to make sure the scar remained mobile, and to preclude adhesions – but moving the muscle had required that they take off a little more bone – no wonder it had ached so much! He reassured me that they’d probably taken less than a centimetre of bone, and they’d also bevelled it more, so that it would be more comfortable. However, I wasn’t sure how I felt about my stump being shortened; it certainly hadn’t been mentioned before the surgery – in fact, the same doctor told me that I wouldn’t get much pain from the surgery because they were not going to cut the periosteum (the skin which covers bone), because only that would cause it to ache a lot. But, if it was just a centimetre, it was probably OK – my stump wasn’t particularly short to start with, so if the result would be a big improvement, then the end justified the means – it was just a bit of a shock, and not the sort of thing that many of us would want to hear, I imagine! Lastly, as the drain bottle contained nothing, the doctor authorised its removal that morning: I felt nothing because of the epidural – phew!

Something else which I found reassuring was that the surgical dressing was not to be removed in the hospital, and ideally not until my post-operative consultation, so there would be no risk of infection. Having had an infection last time, following the usual in-patient dressing-change, I was reassured by the doctor saying that since the dressing had been applied in a sterile environment (the operating theatre), keeping it on would give the wound the best chance of healing properly… good! I was told that dissolving stitches had been used, so there was no need to gain access, and that the incision was completely taped up, so even if the dressing were to come off, the incision should be fine. I still shudder when I recall how the non-dissolving stitches looked, trapped unremovably in my gooey, un-healed, infected stump last time – ugh! I’ll take any chance at a contrast to that!

The epidural was allowed to run out at 48 hours, and while I’d agreed to try Tramadol and Paracetamol (acetaminophen) after it finished, at my request, they’d got a Fentanyl PCA ready – this time I was determined to risk neither nausea nor healing impairment caused by Morphine! The former combination didn't really touch the bony ache which arose as the epidural wore off, so they hooked up the Fentanyl. It’s marvellous stuff – complete pain relief with no nausea, but I did feel as if I was orbiting Mars, which wasn’t so good!

Unfortunately, a few hours after it’s withdrawal, I experienced a reaction to the epidural. I hadn’t had this reaction during my amputation, as back then I hadn’t kept an epidural nearly long enough, but this time, after a solid 48 hours plus the duration of the surgery, it hit hard. I felt terrible, I had a blinding headache, and I was throwing up – not even Fentanyl could console me! In fact, I feared that I was getting nauseous as a reaction to the Fentanyl, so I used it less and withstood more pain; it wasn’t until the epidural reaction had begun to wear off (after about twelve hours) that a nurse told me it was the epidural, and nothing to do with the Fentanyl, but this turned out to be a good thing – when the epidural reaction had largely gone, I found that my pain levels had reduced significantly, and it was good to need less Fentanyl. In fact, I only had the Fentanyl for about a day, before going completely over to Tramadol and Paracetamol.

I left hospital on day 8 and stayed with a friend for a few days, before going gently back to work on day 12; at least I could work from my bedroom, attempting to move mountains with a phone and a mouse! Unsurprisingly, I’ve been pretty tired this last week, and – in contrast to last time – I’ve adopted the philosophy of making sure I’m very well nourished as an aid to healing! I’ve gained loads of weight, but that’s just more incentive to get going on my revised stump!

The super-sterile dressing lasted until the end of day 12, by which time the pads lining it had dropped down and bunched-up so uncomfortably that I had to take it off. The whole thing slid off easily, revealing multiple vertical strips of surgical tape obscuring a fine scar, with fine black threads trailing from it. The scar is much lower down my stump, and the muscle around the end now extends much further up my tibia, providing a generous cushion over the bone; it tapers gently up to a thin edge at the top – I wonder how he did that..! Oh, yes, and my stump does look shorter! I’m not sure how much – I’ll let my leggist tell me when I see her in 9 days time…

Ultimately, I must confess that the revision has felt very good, ever since the surgery. I’ve had the usual hilarious stabbing phantom pains as my freshly-cut nerves work out that they’ve got something to create havoc about, but apart from randomly frightening the people around me, my revised stump has been very able to tolerate flexing of its muscles and probing explorations – it all bodes well… I’ve also managed to avoid falling on it this time, which is good! I fell on the old one five times, none catastrophically, but it wasn’t a good start..!

Tomorrow is the big day, then, when I get to see my new stump (and incision) properly for the first time. As usual, I can’t wait to have a proper shower without a tourniquet-secured bin-bag on my leg, and the concept of actually wearing a prosthesis without enormous pain is still alien to me, but after finding myself almost exactly a year behind schedule, I’m more than ready to experience it! Wish me luck!

I’ll catch up with everyone’s news as soon as I can.

Best wishes to you all.

Roz.

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Welcome back. It's about time that we heard from you again. :rolleyes: Your post was long and detailed, but in my opinion, that is exactly what we also need. Somewhere in there is something for most everyone to take and identify with, from the phantom pains, to the nerves, to the depression. We have all tasted bits and pieces, if not most all of this. This is being realistic of one persons experiences - and, maybe not all, but much of everyone's to one degree or another.

It "ain't" no picnic, but with perserverance, we can - and do - make it through to the other side. I'm proud of you.

To hear your high hopes and positive attitude gives hope and inspiration to others who have, are now, or will face much of what you have gone through. There is light on the end of the tunnel. and it doesn't necessarily mean another train coming. :P

You take care now, and this time, stay with us. You write in such detail that we can feel your pain and frustration - and most importantly - identify with it.

Thank you for sharing.

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Roz, it's good to hear from you again! Sorry you needed to go through the revision, but I remember your descriptions of your first incision as it healed... it sounds like you've done exactly what needed to be done to put it right.

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Roz, thanks very much for the detailed post.

Do you know what caused your original ertl surgeon to leave those nerves where they were?

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Austin, I hadn't thought of Roz as a resource for you! If you've not found her thread from back during her amputation, seach for it and read it... she details her entire experience beautifully!

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Roz, it is so good to hear from you. I have wondered so often what happened to you. I'm glad your revision was successful and that you are progressing so well. Good luck and keep us posted.

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Roz, I'm so glad things are finally getting better for you!

I'll be following your story with interest, as I have a very wide scar that is giving me much trouble... even with my new socket (which is wonderful and doesn't even touch the scar) there is some pistoning causing me some grief. Can't wait to hear only good stories about your revision!

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Can't wait to hear only good stories about your revision!

Like Marilyn, I also wish you only the good. but don't stay away again just because there may not be any that you consider good at the moment. Share what you have, and let us be there for you - and learn from you. Good or bad - Okay? We share it all. That's what we are here for.

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Roz.....I agree with Jim. We all have those awful times when nothing is going right & I think depression

:( goes along with it.

:)

ann

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I hope it goes well Roz. I am just getting over a revision myself.

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Hey Roz, :)

Glad things are going well, good luck for tomorrow.

All I can say is Revision, revision, revision......still no leg, 2.5 years down the line. I know how frustrating it is, whether it's the first or the third! We just never think things will go wrong......but they do.

Glad you took time out to let us know about it, keep us updated.

I fell into the old limb centre world of thinking that because we hadn't heard from you I assumed you were out there living your life to the full with a very sucessful outcome to your amputation. Hope it isn't long until you are doing just that.

Please take it easy, I remember how you pushed yourself too hard after the original amp, so you just be kind to yourself.

Lynne

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Great to have you back Roz.

Hope everything goes well for you. :)

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Do you know what caused your original ertl surgeon to leave those nerves where they were?

Roz, nice to see you back amongst the great and the beautiful. I must admit the same question came to mind as well.

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Hi folks;

Thanks so much for your caring and supportive welcomes back! It's a very good feeling to be looking forward to a positive outcome again, as well as being back in the excellent company of "the great and the beautiful"! We should make our own soap-opera, shouldn't we?!?

Yesterday was excellent - I travelled to Oxford, fearing flooded roads, but the journey was uneventful; however, so many of the hospital staff had been affected by the floods that clinics had been combined, and there were inevitable delays. My heart goes out to all those suffering from our freakish weather.

But - when the Steri-strips came off - a beautiful, fine, even, and fully-healed incision was revealed - and the shape of my stump is really good. I was given a 3-month follow-up appointment as a formality, but the registrar said that it was unlikely I'd need it, and I can cancel it if I want to. I could even shower straight away - not bad for 19 days post-op!

This is such a contrast to the amputation - with messy and unpleasant dressing-changes going on for 5 weeks, and that damned infection...

...which brings me to the issue of the nerves...

I saw my physiotherapist today, and she was hugely impressed with my revised stump - so much so that she's happy to leave things to the limb centre, whom I'll see on Wednesday 1st August. My physio believes they'll re-cast me soon, and she measured me and advised which of my old Juzos to start wearing. She then went on to say that since she sees a lot of stumps, she sees the differences that arise as a result of different specialists performing amputations. Orthopods are usually brilliant with bones, but often leave untidy scars, whereas vascular and plastic surgeons leave neat scars but sometimes inappropriately sharp-edged bone-ends; she reiterated my reflection, that it would be nice to have the three major specialisms all present - orthopaedic, vascular and plastic - for an amputation! Sadly, that exquisite utopia would be really expensive!

I suppose that in my case, my soft tissues were not exactly considered unimportant, but they were a lower priority than my bone-bridge, which in itself was intricate and highly specialised. Human tissue is remarkable stuff, and it can adapt incredibly well, and I really didn't have any trouble from the other two nerves apparently entrapped in my old scar, so I guess I was just unlucky that the main nerve - the Sural nerve - was completely exposed on the surface; I don't imagine it's happened to many - if any - other patients of my orthopaedic surgeon.

As my physiotherapist said, she sees other issues which crop up as a result of areas outside a surgeon's specialism, such as vascular surgeons occsionally leaving sharp bone ends, but that, in general, most of the various issues in an amputation are dealt with satisfactorily, and, even if not ideally, the body can usually accommodate variances. I guess was unlucky to have has my nerves ending up where they did, and to have had a post-amp infection, which tethered my scar, causing it to rub inside my prosthesis, which led to pain and blisters, etc...

However, having found myself in need of a revision, it looks like it's been a good one! I found out that the "bevelling" applies to the bottom inch-and-a-half of the front face of my tibia - where the muscle has been moved up, a shelf has been created in the front of my tibia for the muscle to sit in; this means that the front of my stump (where the incision is) is both well-cushioned as well as flat - this particularly impressed my physiotherapist. Has anyone else come across this technique?

I'm struck with how well-integrated everything feels - it's all so smooth and regular - like it was meant to be this way, as opposed to having been fashioned like this. There's so little pain too - the bone end and the front bone "shelf" still ache a bit to the touch, but not much - I'm daring to believe that this stump will be just right! I'll let you know how it goes.

Mind you, it needs to go right - my bad hip (on my amp side) recently locked! I freed it up by doing a version of some hydrotherapy exercises I was given years ago to keep my hip free, and I had an X-ray. My GP's report was alarming - extensive osteo-arthritis in the hip joint, and loose bodies in the joint capsule, which (apparently) usually means that there would be an area of bone-on-bone contact! It doesn't feel like that, but I guess I'll need to be sparing with the weight-bearing! I've been given a referral to an orthopaedic surgeon (aaaargh! Not another!!!), but I think I'll ignore it until I have no choice..!

Actually, while I was at the Nuffield Orthopaedic Centre in Oxford, I saw a fascinating ball-and-socket joint with both parts made from metal. I think it may have been a hip re-surfacing set, as there was no long shank to go down into the femur, just a short rod coming out of the centre of the "ball" for about an inch. Any thoughts, anyone? I think I'd go for re-surfacing before a THR - but that's another thread!

So, at 3 weeks tomorrow since my revision, I'm back in the thick of work again, and impatient for progress again! I'll keep you all up to date!

Very best wishes to you all

Roz.

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Any thoughts, anyone? I think I'd go for re-surfacing before a THR - but that's another thread!

Good Lord, Roz, a THR too? :blink:

These joint implants don't last forever (15 years in a non-amp) and they don't last as long if you have an abnomal gait. If I was able to, I would have gone for a resurface and/or a joint 'wash out'. However, I didn't have that option & I had a THR.

A THR is easier in a BK compared to an AK, as there's less swelling. If you want to be mobile ASAP then you need to ask for bone cement (you can then be partially weight bearing a day or two after the op). If you need to know the names of the two top hip replacement bods in the UK, then just send me a PM.

Lizzie :)

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Hi everyone;

It's time for a follow-up - I'm soon to get my first pin system leg!

The (July 4th) revision has turned out extremely well - my stump is very "comfortable" - it can withstand pressure in all directions, including a lot directly on the end, and I think that the bevelling of the bone has been very helpful here.

...but my scar! Whereas previously I had a broad, soft, sensitive, blister-prone, hypertrophic scar, now it's a trouble-free fine line - and as the adhesions have gone, the scar is not pulled by the bone as it moves within my stump when I walk, so I no longer get any pain from that problem. It's also wonderful to be free from the agonizing sensitivity of having nerves entrapped within the scar!

The only problem I've had since my revision has been more frequent phantom pain - I get several sharp shocks every day - a consequence of having 3 nerves re-cut, I suppose - but I can usually persuade it to go away by rhythmically tightening and relaxing the muscles in my stump.

I've been increasing my activity levels, and I can now walk a mile on a treadmill at quite a fast pace (which I do several times a week), but my "starter" leg has become a major limitation - as it's a supracondylar design, I can't sit at work without it digging painfully into the sides of my knee, and walking a fast mile soon causes my Otto Bock Derma Seal sock to wrinkle up - the "starter" socket set-up is just not up to such activity levels, and, frustratingly, I haven't been able to get something better.

That's down to my limb centre, which has been good and bad... The good news is that there's a new progressive consultant at my limb centre, and I was delighted when he said I should be fast-tracked to a pin system leg; however, a new computer appointments system has made getting anything done into a frustrating, dragged-out ordeal, and the quality of their work seems to have declined since I got my first legs. My first new socket after my revision was surprisingly badly-made - the PE socket liner was so loose in the socket that it had to be covered in leather to make it fit properly, before it was even given to me! And despite other fit problems and shrinkage of my stump, they wouldn't give me a new (re-cast) supracondylar socket because of a policy to only work on one leg at once, so my pin system must be sorted out first.

That sounds fine in theory, but it took me 3 weeks to get the appointment during which the pin system was recommended, another 3 weeks to get an appointment to be given an Iceross liner to try, another 3 weeks to be cast over the Iceross liner, another 3 weeks to test a check socket - and I suppose it'll be another 3 weeks before I can get an appointment to collect the actual leg - a total of 15 weeks, or almost FOUR MONTHS for a leg!!! And, because of the one-leg-at-a-time policy, during all this time, I've been stuck with my badly-made and ill-fitting first socket - how's that for service?!?

I suppose I'm doubly impatient because I'm so ready for a better leg, but my limb centre is driving me mad!!! It's really difficult to strike a balance between using my inadequate leg sensibly, and not using it; I have, unsurprisingly, overdone things, and had a few skin problems, which has made me slow down, but I really, really don't want to!

I would be most grateful for any advice about my skin issues - I've had blisters (which I treat with blister plasters), but also red patches, and a "hole" about 2mm across at the back of my knee that's been reluctant to heal, even without wearing my leg.

As regards the red patches, I've been a bit worried about them, as they seem like inflammation which might spread; I've been using aluminium chlorhexahydrate anti-perspirant, and have never had a problem with it, and therefore no problems with perspiration either. Could it be that my skin is not liking the Otto Bock Derma Seal silicone sock - particularly under the stresses of high activity levels?

As regards the "hole" at the back of my knee, it's exactly where the top curve of my socket presses on my leg - which is quite hard when I put all my weight through it; is it possible to get a pressure sore from a socket? If so, how should they be treated, and, more importantly, prevented? ...or am I worrying needlessly, because this problem will not be an issue when I (eventually!) get my new socket?

I must say that things are now looking very good - I'm amazed at how much more usable my stump is following the revision; I knew that the reconstructive plastic surgeon I chose was very good, and he's really delivered great results. Therefore, I would recommend considering a revision to fix the kind of scar problems I used to have, as long as a suitably talented surgeon can be found - and - in my experience - that's not necessarily an orthopaedic surgeon!

Best wishes

Roz. :)

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Nice to hear from you again, Roz! :)

15 weeks is way too long to wait for a limb! <_< I'd start making a fuss if I were you. :rolleyes:

Anyway, your skin problems:

Your red patches need a diagnosis I think. Has your rehab consultant any ideas about their cause? It could be an allergic reaction to the antiperspirant...particularly since you have red hair. It could also easily be pressure from your socket. You do it yourself by a process of elimination, meaning that you put the antiperspirant on without the leg for a day or two, then put the leg on without the antiperspirant for a day or two. You can then see if there's any improvement either way & if there is you can take steps (excuse the pun ;)) to help the red patches. If there's no improvement then it could be a fungal infection, but you need a doctor to take a look at it if you suspect you have one.

About your 'hole'. It sounds like a small ulcer. The only treatment is rest (for several days) and possibly systemic antibiotics. If the ulcer is caused by pressure then the socket needs to be adjusted - pressure can be applied to other areas in the socket. One word of warning is that if you get red lines up your leg and/or you get a temperature you need to see a doctor.

I'm surprised you don't have a locking pin system already! It's much easier to use and you probably wouldn't have so much pressure on that area near your knee.

Take care

Lizzie :)

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Hi, Roz... thanks for the update! It is indeed possible for a socket to cause a pressure sore or ulcer. Lizzie's given you good advice on treatment; ultimately, though, the only thing that will solve the problem is an adjustment to the socket itself. Is that out of the question while they're working on your new leg? Surely not!

I've been fortunate in that I've never actually reached the point of developing an ulcer on my stump... my one and only "problem" there was a small friction blister about 18 months ago. However, having diabetes, I have had ulcers in other places upon occasion. If you can get the supplies, there are ways of doing a dressing on them to promote healing. For mine, they've had me use three layers of dressing: a small piece of either CalciCare or Aquacel AG (both are thin, whispy "mesh" type dressings... they go directly on the "hole" and provide a sort of scaffolding for new skin to develop), topped with a larger bit of Alevyn sponge dressing to provide padding and wick away any discharge, and then a Teraderm patch (a very thin, flexible blister bandage) to hold everything in place. That combination has gotten me through in good shape... if rest alone does not clear up your "hole" quickly, you might want to try it.

Good luck... I hope they get you all sorted out soon. Sounds like the surgery went very well, and I'm glad to hear that!

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HI Roz,

I'm a little late with a reply so excuse me for that.

First of all I would like to thank you for your help in finding a UK surgeon that performs ERTL procedures. He is a Godsend and through you I was able to contact him. Thank you Roz....you have no idea how appreciative I am for your help.

It's so good to hear your progress is getting up to speed. I know the whole 'limb fitting thing' is driving you nuts but hang in there. I'm in the same boat as you at this moment, waiting for a limb. For some reason appointments at this time of year with a Limb Fitting Centre are hard to come by. ( Jan 8th is my next appointment :huh: )

I had a few problems after my ERTL procedure. Suffered an infection which resulted in a 'sloughy' area forming on my incision line. I had to go back under the knife and have my stump re-fashoined. Fortunately it has healed fine right now and I'm a really, really surprised at how good my leg feels. I can't wait for you to get your new leg so we can compare notes.

I feel like shouting at the top of the world because almost 3 years of pain and discomfort have been obliterated. I know you feel the same...probably even more so, enduring for a longer period of time.

For all the doubters of ERTL; this procedure is not a save all....but it provides those with dire situations with another option and so far I have nothing negative to say. I know it's early days but my body tells me that this is an option that should be offered more. Find a reputable surgeon and the difference is night and day.

I'm sure Roz can attest to this...

Anyway enough of my soapbox analogues....Again I am so happy to hear you are doing better Roz. We need to catch up sometime!

Until then....lotsa luv.. B)

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Hi gang!

I hope you've all had deliciously over-indulgent Christmasses! Despite my best efforts not to, I'm afraid I have!

Great to hear from you Londonguy! I'm so glad that you got the procedure you wanted, and that everything now feels good to you. Now that my revision has settled down, my stump feels amazingly strong - when I press sideways on the bottom of my fibula, it's absolutely solid, which is not only very reassuring, but I'm sure the strength really helps me to rush about at break-neck pace without feeling at all unstable. I look forward very much to hearing of your progress Londonguy, but I have some new information for you about our variation of the Ertl - weight-bearing on the end of the stump may be slightly problematic! More below...

Cherylm and Lizzie2, thanks for your replies about the "hole" in my skin - it was indeed a pressure-sore, caused by my old supracondylar socket putting too much pressure on the back of my knee as it became an increasingly worse fit; keeping out of my leg for a week made it mostly heal up, but there's still a red mark there which flares up quickly when I wear my leg, so I've become restricted by my old socket...

...and I was supposed to have escaped from the darned thing! I was due to collect my new pin system leg (complete with Elation foot!!!) on 18th December, and I couldn't wait! A wonderful new leg for Christmas! In the days leading up to this crucial appointment I'd even begun singing, "All I want for Christmas is a decent leg..!" - but it was not to be - sob!

I'd had a check socket fitting, and it was way too loose - just as the original supracondylar socket was; my prosthetist said she could make the definitive socket a tighter fit, but to my dismay, it was far too loose as well. Even with 3 additional thick socks over my liner, I went straight to the bottom of the new socket, and while I tried walking in it, I got a lot of unaccustomed discomfort from pressure on the end of my stump. How could they have got it so wrong, despite the check socket fitting only 2 weeks earlier?

My prosthetist conceded that I would have to be re-cast, and I said that this time I'd want a socket with a pelite liner as well, so there would be some mechanism to accommodate the looseness that currently seems to be customary with new sockets at my limb centre...

...but then I saw my consultant. He said that pin systems always put more pressure on the end of the stump, but I'd never heard of this before; he pressed on the end of my stump, and I did feel discomfort at the back of the tibial bone-end, and his conclusion was that with the amount of sensitivity I seem to have, I almost certainly wouldn't be able to walk a mile using a pin system - as I could manage with my supracondylar before it began damaging me. Apparently, lots of BK amps have too much stump-end sensitivity to be able to tolerate a pin system, so they have to be given alternative suspension methods.

Has anyone else been told about, or experienced, this stump-end-pressure problem with pin systems?

What amazes me is that, if this is true, why wasn't I checked for stump-end sensitivity back in September, when the pin system was set in motion for me??? By the time I'll be cast for a new socket, it'll be four months since the (apparently inappropriate) decision to give me a pin system was made, so I'm really disappointed - on top of not getting my new heel-height-adjustable leg, this apparent complete waste of time has rather clouded my Christmas.

So, on January 17th I'm going to be fitted with a Tec liner and a suction socket. As I've always assumed that a pin system would be the next logical step for me, I've found out all about liners and rods and clutches and ratchet systems, but I can't seem to find anything informative about either Tec liners or suction sockets - please help me, o wise ones!!!

I believe that the original Tec system was bought by Otto Bock, and is sometimes associated with the Harmony system, but how does it work with a valved suction socket? Will I need to wear a suspension sleeve? Are there different types of BK suction sockets?

Also, I suppose I'd be interested to know whether an Ossur seal-in liner would be a viable alternative to a pin system - is a seal-in liner less likely to put pressure on my bone-end? I understand that as I'm still less than 6 months from a revision, I may not be ready for a seal-in liner, but are volume changes likely to affect the fit and function of the proposed Tec liner and suction socket too?

I would be most grateful for any thoughts anyone may have, and pointers to some information on Tec liners and suction sockets.

I wish you all a very happy New Year, and better mobility and comfort (and quicker results!) for us all!

Best wishes

Roz. :)

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Hi, Roz

Don't you feel like Cinderella, sometimes???....just waiting for that prince to show up with the perfect fitting shoe!! <_<

Have you been offered the option of a vacuum assisted socket? It would certainly address your comfort and volume fluctuation issues. Both Neal and Marcia wear one (BK version) - maybe you could pick their brains.

Hang in there. I have no doubt you'll be dancing, running or whatever you wish in the New Year!!

XO Karen

Hi gang!

I hope you've all had deliciously over-indulgent Christmasses! Despite my best efforts not to, I'm afraid I have!

Great to hear from you Londonguy! I'm so glad that you got the procedure you wanted, and that everything now feels good to you. Now that my revision has settled down, my stump feels amazingly strong - when I press sideways on the bottom of my fibula, it's absolutely solid, which is not only very reassuring, but I'm sure the strength really helps me to rush about at break-neck pace without feeling at all unstable. I look forward very much to hearing of your progress Londonguy, but I have some new information for you about our variation of the Ertl - weight-bearing on the end of the stump may be slightly problematic! More below...

Cherylm and Lizzie2, thanks for your replies about the "hole" in my skin - it was indeed a pressure-sore, caused by my old supracondylar socket putting too much pressure on the back of my knee as it became an increasingly worse fit; keeping out of my leg for a week made it mostly heal up, but there's still a red mark there which flares up quickly when I wear my leg, so I've become restricted by my old socket...

...and I was supposed to have escaped from the darned thing! I was due to collect my new pin system leg (complete with Elation foot!!!) on 18th December, and I couldn't wait! A wonderful new leg for Christmas! In the days leading up to this crucial appointment I'd even begun singing, "All I want for Christmas is a decent leg..!" - but it was not to be - sob!

I'd had a check socket fitting, and it was way too loose - just as the original supracondylar socket was; my prosthetist said she could make the definitive socket a tighter fit, but to my dismay, it was far too loose as well. Even with 3 additional thick socks over my liner, I went straight to the bottom of the new socket, and while I tried walking in it, I got a lot of unaccustomed discomfort from pressure on the end of my stump. How could they have got it so wrong, despite the check socket fitting only 2 weeks earlier?

My prosthetist conceded that I would have to be re-cast, and I said that this time I'd want a socket with a pelite liner as well, so there would be some mechanism to accommodate the looseness that currently seems to be customary with new sockets at my limb centre...

...but then I saw my consultant. He said that pin systems always put more pressure on the end of the stump, but I'd never heard of this before; he pressed on the end of my stump, and I did feel discomfort at the back of the tibial bone-end, and his conclusion was that with the amount of sensitivity I seem to have, I almost certainly wouldn't be able to walk a mile using a pin system - as I could manage with my supracondylar before it began damaging me. Apparently, lots of BK amps have too much stump-end sensitivity to be able to tolerate a pin system, so they have to be given alternative suspension methods.

Has anyone else been told about, or experienced, this stump-end-pressure problem with pin systems?

What amazes me is that, if this is true, why wasn't I checked for stump-end sensitivity back in September, when the pin system was set in motion for me??? By the time I'll be cast for a new socket, it'll be four months since the (apparently inappropriate) decision to give me a pin system was made, so I'm really disappointed - on top of not getting my new heel-height-adjustable leg, this apparent complete waste of time has rather clouded my Christmas.

So, on January 17th I'm going to be fitted with a Tec liner and a suction socket. As I've always assumed that a pin system would be the next logical step for me, I've found out all about liners and rods and clutches and ratchet systems, but I can't seem to find anything informative about either Tec liners or suction sockets - please help me, o wise ones!!!

I believe that the original Tec system was bought by Otto Bock, and is sometimes associated with the Harmony system, but how does it work with a valved suction socket? Will I need to wear a suspension sleeve? Are there different types of BK suction sockets?

Also, I suppose I'd be interested to know whether an Ossur seal-in liner would be a viable alternative to a pin system - is a seal-in liner less likely to put pressure on my bone-end? I understand that as I'm still less than 6 months from a revision, I may not be ready for a seal-in liner, but are volume changes likely to affect the fit and function of the proposed Tec liner and suction socket too?

I would be most grateful for any thoughts anyone may have, and pointers to some information on Tec liners and suction sockets.

I wish you all a very happy New Year, and better mobility and comfort (and quicker results!) for us all!

Best wishes

Roz. :)

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Has anyone else been told about, or experienced, this stump-end-pressure problem with pin systems?

Also, I suppose I'd be interested to know whether an Ossur seal-in liner would be a viable alternative to a pin system - is a seal-in liner less likely to put pressure on my bone-end? I understand that as I'm still less than 6 months from a revision, I may not be ready for a seal-in liner, but are volume changes likely to affect the fit and function of the proposed Tec liner and suction socket too?

I would be most grateful for any thoughts anyone may have, and pointers to some information on Tec liners and suction sockets.

I wish you all a very happy New Year, and better mobility and comfort (and quicker results!) for us all!

Best wishes

Roz. :)

Hi Roz

I was wondering how you were doing. Glad you had a good Christmas but sorry to hear about the problems with your new leg with the pin system.

Not sure too much about stump end sensitivity, generally, but know the end of one of my stumps is very sensitive but assummed it was because its very boney and skingrafted. However, have tried the pin systems a few times, at different centres, and I can't tolerate it on either stump. Couldn't even manage to walk down the bars, even with my "good" stump, I was told at the time that "it was because of the way it was amputated", as unable to bear any weight at all on it, however, would have thought that Ertl revision you had would have solved that problem.

I tried the Tec about 10 yrs or so back when they were quite new here, this was with my skin grafted stump, and unfortunately didn't have too much success with it. I think the liners have changed a bit now, but then you had to smear vaseline over the entire liner and your stump, which was quite messy. My problem with it was that it would feel wonderful for about half an hour and then I would just go straight down onto the end of my stump and it would become quite painful. One of the drawbacks I remember at that time, was that the end of the gel liner became very thin and ordering new liners that were custom-made took quite a time.However, as I say the procedure was quite new at the time, well at my centre anyway, and I was the first they tried it on.

A couple of years back we had another attempt, on that stump, with the Tec/harmony (no vaseline that time), this worked as a suction socket and I had problems with that also, very similar to the ones I had with the previous tec. Both times I did need a sleeve to hold on the Tec and seal out all the air. Once again, I tried this when it was new to my centre, and must admit when I first encountered the problems which I had experienced previously, didn't want to take it any further.

Sorry, probably not been much help to you, haven't seen that many B/k's using suction sockets lately, except for the tec/harmony system, years ago I remember a bilateral b/k who used to use them very successfully, however she had quite long stumps and could bear weight quite happly on the end, which I think was part of the ankle.

Have a good New Year and hope you get a leg that fits soon.

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Nice to hear from you Roz.

At the very least it sounds much better for you since the revision than before.

Keep at it and try to be patient.

There is always something new to learn. ;)

Happy new Year

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