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VeryScared

Right Around the Corner, Roz!

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That's great Roz, you are going great and really busy with those 12 hour shifts.

No wonder you haven't replied to my email! :D

Lynne

Hey, I was just thinking the same thing, Lynne! :lol:

Yes, you're doing great, Roz. Just make sure that you're diet is good - lots of vitamins & minerals.

Take care

Lizzie :)

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Guest bearlover

Sounds wonderful Roz!! So happy for you...Your a real amazing strong perons keep up the good work! :)

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Okay Roz

Did you say that tomorrow - or the next day that you go from patient to Instructor??? :lol: :lol:

I think that you passed the new amputee faze altogether.

Fantabulous!!!

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Hi all;

I’m walking!!! I have a leg and I’m walking!!!

Life has been insanely busy since my last update – I saw my surgeon to make sure my Ertl was OK, I began walking with the PPAM-aid, I was cast for my first leg, and just 3 days ago I received my first leg, and consequently I’ve now begun a whole new journey… and in the midst of all this, I was given a huge promotion at work, which results in 12-hour days and working at 4 sites, 2 of which are building sites – ulp! Navigating broken ground and debris on my OneCrutch has been kinda scary, but – like so many challenges – it’s probably done me no harm at all! To my dismay, being so busy has also kept me from posting regularly, but here’s the nitty-gritty…

Seeing my surgeon was completely straightforward, and entirely positive. He really liked the look of my stump, although the scar still looks a bit alarming! This is probably a legacy of it having being infected and the stitches being left in for a month, but I imagine it'll fade into insignificance with time. But he said the shape was great, and it had greatly reduced in volume since he’d last seen it.

Then my surgeon did his threatened Ertl test, squeezing my stump’s tibia and fibula together – very hard - from several angles - and apart from the pressure of his hands, there was no pain at all from the bones. Test passed! He said that my stump was definitely ready for a limb, which was music to my ears! Immediately after the appointment I called my limb centre and my physiotherapist to make sure they were ready for me to rush into proper rehab, but I had already set up appointments with both, so I began with the PPAM-aid at physiotherapy only two days later, and saw my limb centre the following Monday, to be cast for my first leg.

I found the PPAM-aid to be a strange thing, and not particularly helpful! I was well accustomed to being upright and walking (after a fashion!) because I've been very active using my One-Crutch, so the walking aspect with the PPAM-aid came really easily, but it felt unnatural having no choice but to keep my leg straight at the knee. I found the PPAM-aid frame to be amazingly heavy and cumbersome, and the shoulder-strap kept slipping off, and using it caused quite a lot of discomfort in my stump, but I was pleased to have advanced to the stage where I was putting weight through my stump, as opposed to my bent knee, as with the OneCrutch.

On my first session, whilst my physiotherapist wasn’t looking, I took a few steps in the PPAM-aid without holding the rails at all - what a great feeling! However, they only let me go up and down the parallel bars three times, apparently to prevent phantom pains being triggered, but I did indeed get a few more phantoms that evening. At the next session I did about 16 trips up and down the parallel bars, and the physiotherapist changed me over to using reciprocal gait – left hand then right leg, right hand then left leg, which involved much less weight being taken through my hands, and even though this was much harder work and strained my stump more, I only got the same phantoms later as I’d had after my first session. I spent even more time in the bars the next time, and was relieved to get fewer phantoms later, and at my fourth session – which was to be my final one – I took things a bit more easily, because I didn't want to strain anything before getting my first leg…

I went to the limb centre after my first PPAM-aid session, and they cast me then for my first leg. My prosthetist and the limb centre manager decided to give me an upgraded foot for my first leg - an Endolite Navigator. I was told that with the Navigator, the flexion at the ankle is lower down than the MultiFlex foot (which had originally been planned for me), and is therefore more anatomically correct, and that it’s lighter than the MultiFlex. I was given an appointment for 10 days later to return and be given my leg, and I could not imagine how I’d have the patience to wait that long!

Then leg day finally came! I’d been really careful to avoid falling before this day, which had not been easy, as I’d been required by work to visit 2 building sites, both of which had badly damaged floors; I felt it was prudent to avoid descending into the cellar of one site, because while the OneCrutch enhances mobility and frees-up a hand, it’s less stable than elbow-crutches in episodes of tripping or stumbling.

I arrived at the limb centre early, and was shown into a large room with 2 sets of parallel bars, and my leg was waiting, propped against a low table – it was a magical sight! It’s a white supracondylar socket with a pelite liner, a carbon-fibre pylon, and the Navigator foot, but sadly none of its clever features were visible past the foot shell. My prosthetist arrived, and we began experimenting with socks and alignment. As my stump had continued to shrink since casting, I ended up wearing a thicker sock with the terry side outer-most, as this was most comfortable against my skin. The pylon also had to be shortened early on, and I noted that the main area of adjustment was the interface between the base of the socket and the top of the pylon, which had to be visited 3 times.

As I’d read many times in the forum, it was impossible to know what to expect, impossible to know how my first socket should feel, but after the 3rd adjustment and my 3rd trip between the parallel bars, using the leg suddenly felt much easier. There were two things I hadn’t been ready for – firstly, how much strength I would need in my quadriceps, and secondly, how uncomfortable it would be!

I will wait with great interest to see whether the technique I’ve had to learn will be required for future legs, but I was fascinated to discover how working to keep my leg straight was essentially the key to walking with my first prosthesis; this was really difficult at first, with my quads having become so lazy, but they have risen to the challenge!

As regards the discomfort, my prosthetist recommended that I try putting a 4-inch square gel pad over my scar, and this really helped. It was a little alarming, however, to feel such enormous pressures being applied to bits of my stump as I walked! I was concerned for it, but it seemed to survive!

A slightly odd but very positive event occurred at the limb centre – the consultant in charge came to see me, and I think he thought I was a different patient! He asked me how I was getting on with my prosthesis, and even though it had only been a couple of hours, I was most encouraged, so I cheerfully said “Fine, thanks!” He then asked to see me walk in the parallel bars; I didn’t need to be asked twice, and I sprang into my reciprocal gait walk, after which the consultant told me to use just my left hand, resting on his finger, as he moved it along the left bar. I hadn’t planned on being adventurous, but I managed the task – so well, that the consultant then asked me to walk without touching the bars! Well, he was the boss, and as he seemed to think I would be able to walk unaided, I imagined he must be right! To my own surprise, I managed it just fine, but then I think the consultant caught sight of the slightly aghast expressions of my prosthetist and the limb centre manager, and he asked in a slightly unbelieving tone, “…is this your first day walking with a prosthesis?”, to which my prosthetist replied, “…first – ever!” …there was a slightly odd silence… But, as I was still upright and grinning, even if I’d been mistaken for a more advanced patient, the outcome had been entirely positive, so we were all happy!

After over 3 hours at the limb centre, and having promised my prosthetist that I would refrain from wearing my leg until my physiotherapist had coached me on which muscles to use and how, I took my new leg away from the limb centre, enthralled at having walked for the first time in 11 weeks, and really looking forward to the future!

The following day at physiotherapy, my muscles successfully continued learning how to walk – I found it very strange at first, having to do such different things with my amputated side than my other side, in order to make them work the same way! After a session in the parallel bars I was given 2 walking sticks and was walked around the floor, and I wore the leg again that evening, briefly walking without sticks – it was wonderful!

Today, I’ve walked without sticks for 20 minutes, checking my gait in a mirror, and it seems OK, and I’ve found that with care I can avoid limping – but at this early stage I won’t do too much outside physiotherapy, as I won’t be able to see whether I’m developing bad habits. I’m absolutely delighted to be walking unaided on only my 3rd day with a prosthesis! It certainly hurts a bit with the first few steps, but I’m very encouraged at how the pain goes away after only a few steps; I eventually become aware of pressure at my kneecap and the back of my knee, and this is my cue to stop and rest. Tomorrow I’ll be wearing my leg for 2 sessions of 90 minutes, increasing, as is the custom, by a further 30 minutes each session each day.

I must share a very odd insight – I moved into my current house after my amputation, and have spent a lot of time in the house in my wheelchair; it’s very strange suddenly seeing everything from standing and walking height – it all looks very different! I guess this isn’t surprising, as when I’m walking with my leg on, I feel ten feet tall!!!

Oh, yes, another thing – since I began walking again, I’ve found myself falling asleep grinning with sheer joy! Life is very, very good!

Very best wishes

Roz. :D :D :D

Fantastic, I am thrilled for you. DO NOT OVERDO!!! Take it easy with the new leg - I know it is a temptation to just take off and go with it. But do not do it. Best of luck.

JudyH

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I must share a very odd insight – I moved into my current house after my amputation, and have spent a lot of time in the house in my wheelchair; it’s very strange suddenly seeing everything from standing and walking height – it all looks very different! I guess this isn’t surprising, as when I’m walking with my leg on, I feel ten feet tall!!!

Oh, yes, another thing – since I began walking again, I’ve found myself falling asleep grinning with sheer joy! Life is very, very good!

Well done Roz, I know that giant feeling - isn't great.

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That's great news - but as others have said take care not to overdo it and set yourself back.

Being upright on two feet (even if one of them is different) is such a good feeling.

Sue

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Guest bearlover
That's great news - but as others have said take care not to overdo it and set yourself back.

Being upright on two feet (even if one of them is different) is such a good feeling.

Sue

OH YES!! I over did it and set my self back big time!! At first i was out with my crutches and a backpack doing shopping, running around on crutches and a stump. Doing this doing that!! Then WHAM!!! I got real sick and it lasted for 3 months! :o So please do not over do it! Been their done that!! ;)

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since I began walking again, I’ve found myself falling asleep grinning with sheer joy! Life is very, very good!

Roz,

I am so happy for. Reading your post was so encouraging. I am really surprised by the rate of recovery. Gives me a lot of hope for my upcoming surgery. I hope your recovery speeds up even more.

Regards

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Such good news, Roz. I'm so happy for you.

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I think we can all remember the day when 'we walked again." It's a great feeling to look down and see two feet again.

Take it easy for awhile. You don't want any setbacks.

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Hi all;

Many thanks for your replies - and especially the advice about not over-doing it!

I think my physiotherapists have decided to teach me that lesson the hard way!

After an insane morning meeting on the building site (on my OneCrutch), I went for physiotherapy today, and as I was only supposed to wear my leg for 2 sessions of 2 hours today, I arrived at physiotherapy not yet wearing my leg. I popped it on and it felt OK, and as I was so pleased with my progress, I wanted to show my physiotherapist how well I was doing, so I put down my sticks and calmly walked across the room with almost perfect gait - well, I had been practising over the weekend! She said I was amazing - but there was another physiotherapist there who was not so easily impressed!

I instantly found myself in the "advanced" class, where my first exercise was to stand on my prosthesis with ALL my weight, whilst resting my good foot on a ball, rolling it forwards and backwards and side-to-side! Ouch! Then he had me standing on a wobble-board with a semi-circular underside, where I had to tilt the board up and down on alternate sides with each foot, then forwards and backwards - aargh!

...but none of this compared to the stresses of the treadmill!!! The gait I'd been so proud of evaporated instantly, as my fatigued muscles and unfamiliarity with the machine had me clumping along as if I'd downed large quantities of Smirnoff! I almost got the hang of it after I insisted he made it go faster - very slow walking was much harder...

Is it me, or is this rather extreme for my 5th day of having a leg?!?

The physiotherapist had, of course, been evaluating me during all the exercises, and once off the treadmill he isolated a particular section of my quads which is particularly weak, so he gave me some TheraBand elastics, and some homework exercises; I'm relieved that I can strengthen these muscles without all the foregoing torture!

I must say that my stump is quite sore tonight, so I'll definitely be taking it easier tomorrow!

Todays rigours also began to illustrate many of the things I've read about here - I believe I was pistoning in my socket to a small degree, and I could feel how the fit affected control - I think I've shrunk since I was cast, and during the wobble-board exercise I found the top edge digging into my knee.

Phew! The learning-curve continues...

Best wishes

Roz. :)

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Hi all;

Many thanks for your replies - and especially the advice about not over-doing it!

I think my physiotherapists have decided to teach me that lesson the hard way!

After an insane morning meeting on the building site (on my OneCrutch), I went for physiotherapy today, and as I was only supposed to wear my leg for 2 sessions of 2 hours today, I arrived at physiotherapy not yet wearing my leg. I popped it on and it felt OK, and as I was so pleased with my progress, I wanted to show my physiotherapist how well I was doing, so I put down my sticks and calmly walked across the room with almost perfect gait - well, I had been practising over the weekend! She said I was amazing - but there was another physiotherapist there who was not so easily impressed!

I instantly found myself in the "advanced" class, where my first exercise was to stand on my prosthesis with ALL my weight, whilst resting my good foot on a ball, rolling it forwards and backwards and side-to-side! Ouch! Then he had me standing on a wobble-board with a semi-circular underside, where I had to tilt the board up and down on alternate sides with each foot, then forwards and backwards - aargh!

...but none of this compared to the stresses of the treadmill!!! The gait I'd been so proud of evaporated instantly, as my fatigued muscles and unfamiliarity with the machine had me clumping along as if I'd downed large quantities of Smirnoff! I almost got the hang of it after I insisted he made it go faster - very slow walking was much harder...

Is it me, or is this rather extreme for my 5th day of having a leg?!?

The physiotherapist had, of course, been evaluating me during all the exercises, and once off the treadmill he isolated a particular section of my quads which is particularly weak, so he gave me some TheraBand elastics, and some homework exercises; I'm relieved that I can strengthen these muscles without all the foregoing torture!

I must say that my stump is quite sore tonight, so I'll definitely be taking it easier tomorrow!

Todays rigours also began to illustrate many of the things I've read about here - I believe I was pistoning in my socket to a small degree, and I could feel how the fit affected control - I think I've shrunk since I was cast, and during the wobble-board exercise I found the top edge digging into my knee.

Phew! The learning-curve continues...

Best wishes

Roz. :)

Roz,

You are doing extremely well. DO NOT OVERDO!!! Make certain you tell your prosthetist how you feel about pistoning. If it hurts it isn't right and needs to be adjusted. Best of luck.

JudyH

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Hi all;

After a month of new leg experiences and work becoming simply unbelievable, I'm back!

I've worked out why using my new leg has come so easily to me - it's because my old leg was so bad! My old leg had foot-drop and was weak in all other planes of movement, and I had to be very careful how I placed it so the arthritic ankle wouldn't hurt any more than necessary; learning to walk on something so compromised taught me a great deal of what I needed to know about walking on a prosthesis, and I'd had 27 years of practice! I still needed to recover from the inevitable muscle wastage of sitting around following an amputation, and my quads needed to learn how to become the main controlling muscles of a leg via a BK stump, but it's all come very naturally to me, and I'm delighted to finally have a positive outcome from tolerating that awful leg for so long!

My stump pain settled down quickly, and I learned the lesson of the socks - initially I didn't make the connection between discomfort and needing to add socks, and I was amazed at the difference it made! By 3 weeks I was putting on 2 thick socks and one thin sock before donning my leg, increasing to 3 thick and 1 thin during wear, so it was off to the limb centre to have my pelite liner lined with leather to make everything snug again with fewer socks. Speaking of socks, no-one I know seems to understand the ply-ratings of the NHS-supplied Medalin socks - even my prosthetist refers to them as just thick or thin - does anyone out there know the ply-ratings of Medalin socks?

I'd also had some problems with my incision, which had become quite painful while wearing my leg, and it had also blistered a few times, so the liner and socket were eased out at the front at the same time. My physiotherapist also gave me a suspension sleeve to help control my socket, and this really helped to make everything feel secure and solid, and seemed to help reduce the discomfort in my incision.

I had a few more adjustments to my liner and socket at 4 weeks, and this made everything feel really good - so good that I decided to try something daring! I waited for my prosthetist to leave the room, and I launched myself into a run! It hurt a bit, but it worked - joy! The following Monday I told my physiotherapist, and she immediately put me on a treadmill, where I walked faster and faster until I was running. I only did it briefly, as I still need more strength in my quads for better control of my leg, but it was exhilerating and hugely encouraging!

I cannot find words to express my joy at being able to walk and run, for the first time in 27 years, without grinding arthritic pain. I have no doubt that opting for the amputation over the alternative distal tibial osteotomy and pan-talar arthrodesis was the right decision in my case - there's no way a fused ankle could have worked as well as even my "starter" prosthesis, and I look forward to pushing prosthetic technology to its limits!

Despite the "training" that my bad old leg gave me, I'm also certain that my Ertl stump has a great deal to do with how well I can do these things so quickly; initially I was slightly alarmed at how much pressure and leverage I felt being applied to my stump during prosthesis use, but it has not flexed or yielded or given rise to any pain or discomfort - I believe I have the Rolls Royce of below-knee stumps, for which I am profoundly grateful to my surgeon. As I expected, I can sometimes feel my unstable knee joint separating a little, but the rigidity of the Ertl prevents it from feeling uncontrollable.

...but my incision has remained a problem...

My problems are 2-fold: firstly, I have 2 areas where branches of the common peroneal nerve are trapped in the incision, and, secondly, the incision blisters what seems to be all too easily. The trapped nerve areas cause aches in my phantom foot when I'm wearing my leg, but when I get a blister, it's always on or very near those places, which amplifies the pain a great deal. Added to this is the inconvenience of not being able to wear my leg while the blister heals up.

The last blister arose after wearing my leg for about 6 hours, which I would have thought should be OK after 5 weeks. They always occur on my incision, never anywhere else, despite my socket liner having been eased out at the front.

What are your thoughts? Has anyone else had a scar that blistered at very little provocation? My scar is very untidy - the edges of the skin didn't meet after my surgery, and the wound had to "epihelialise" from the inside outwards; consequently, the scar comprises a wide red band of new skin, and it's this that blisters. Oh, yes - the scar is still adhered, or tethered, across my tibia, but this seems to be loosening with time.

Also, has anyone else had to cope with nerves in a scar, which cause pain in their phantom foot? Did it ever settle down? I've done the massage and tapping of the areas as recommended, but the sensitivity and pain aren't going away. I've heard mention of injections into neuromas and similar problem nerve areas - has anyone had this, and did it work?

I'm beginning to think that I may need to have my scar revised, to remove the wide red band of easily-blistering skin, and also remove the areas which contain those painful nerves.

Even if it's to tell me to be patient, I'd be most grateful for your thoughts, as it's immensely frustrating to be able to use my leg so well, only to find blisters and nerve pain from the incision wrecking my progress and rendering me legless!

On an alarming and humorous note, I have driven whilst wearing my leg, but it was a bit strange at first! Getting into my car was the first hurdle - my old foot was 2 sizes smaller than my good foot, but the prosthetic foot is full-size, which - in my case - is infuriatingly big! I've had to learn entirely new twists and turns to even get it through the car door and into the footwell! Once there, needless to say, the foot doesn't go flat, and the suspension sleeve restricts how far I can bend my knee, so there have been a couple of occasions where my prosthetic foot seems to have stubbornly dominated the accelerator pedal, and I've had to stand on the brake pedal with my left foot until I could negotiate my prosthesis out of the way! Unless I get a quickly-detachable leg, I might have to get a left-hand-drive car, so I can fling my prosthetic leg over the centre console, out of the way! Hee-hee - it's all part of life's rich slapstick comedy!!! :D

I'll try to post more regularly from now on - I'd like to think I'm getting work under control!

Best wishes to you all

Roz. :)

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Hi Roz,

It's so good to hear from you. I was wondering if things had taken a turn for the worse due to your forum silence. I am glad everything seems to be coming along quickly ( apart from the blistered scar tissue ). It's so encouraging hearing your kudos to your surgeon. I have my first consultation with Dr. R on Dec 19th. Nervous and hopeful.

You mentioned something about nerves trapped in your scar tissue, which is what I currently have on my limb. I can only speak from my experience but it varies. Sometimes it can be hypersenstive....shooting pains, twinges ( no these are not phantoms pains for the others reading ), at other times it is less intrusive in my life causing mild discomfort.

One thing I can say on over 2 years it hasn't diminished. I think I've gotten used to it I suppose.

Anyway,

Wish you all the best...

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Hi Chris!

Are you seeing Mr. R. for an Ertl revision? If so, I'm delighted it's come together for you! He's brilliant, and a very nice man too! If you're going into the North Hampshire Hospital and you're having a post-op epidural, tell them to make sure it doesn't come out or come apart, as happened to me!!! Apart from that, they're brilliant too.

Yeah - nerves in the scar are sometimes irrelevant, sometimes hideous... I'd certainly prefer to be without them!

A silicone sock has been mentioned to help reduce friction on my scar and help control the skin on my stump - any thoughts or experiences, anyone?

Best wishes

Roz. :)

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