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Heather Mills - Amputee Forum

deets

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deets last won the day on June 12 2017

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About deets

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  • Gender
    Male
  • Location
    Lancashire UK
  • Interests
    Sea Angling and camping

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  • Membership Type:
    Amputee
  • Amputation Type:
    RAK
  • Amputation Date:
    04-01-2010
  • Amputation Cause:
    Infection 0f TKR

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  1. deets

    Shower leg?

    Hi looking for a bit of advice from anyone. Although I've no complaints ay all as to my NHS provision - I've been lucky and incredibly well supported by my DSC team .....but I have one bugbear. I don't have a spare limb of any descript , unlike the majority of others I speak to. Whilst I don't necessarily have the need for a specific activity type of spare, I really could do with a shower leg - basic stuff non bending just a prop up and wash job! It would save so much effort and aggro - esp as my bath lift handset has just done a poor impersonation of a grenade! That's gonna take sooooooo long to be sorted 😴. Best ive been given is a leaflet for a big sealing bag to put on my own leg. But it's near on £50 I don't have and given my MPCK cost so much the risk of complete immersion just isn't one I'm prepared to take. NHS would soon point the finger at something I bought and used if I destroyed that! So is it something I can press for or should I ask they supply the bag given the risk? Thanks
  2. deets

    Ouch ! Please help !

    Hi everyone - I wonder if anyone can offer any advice or share a similar issue? Im a TF of 7 years. With an underlying history of severe Rheumatoid arthritis. I have recently been lucky enough to benefit from the welcome change in NHS provision of MPCK. Having been plagued with injuries from bad falls, my prosthetic team made my application from the prevention of injury perspective. It was successful and I got my trial favourite, the Ossur Rheo 3. But I am struggling still. The knee is great, but it's my stump. I have developed an odd distal pressure wound right on corner of my stump incision. It is an odd circular raised lump of narly subcutaneous hard tissue and the open sore in its middle. Initially, I believed it had formed as a result of my suction sockets (iceross x5 liner) air release button being at this exact point and seemed to match exactly the circle shape and diameter. Now I'm not so sure. With a view to helping this , I have been made a new socket, with cut outs on the back and front. It isn't a carbon one it's the resin type ( don't know if that makes any difference at all though and defer to better informed on that ) The cut outs are On the thigh (for grandchildren and resting things more securely) and one at the rear of the thigh for more comfortable sitting and toilet sitting. Thing is my problem has worsened and now I get the most horrific cramp imaginable. It starts in my thigh then develops into phantom limb Pain as it turns into cramp resembling a pain I can only describe as my lower leg and ankle exploding. If I take the leg off it instantly stops. The distal pressure sore has worsened and I now have a permanent 2/3 cm long wound that is around 3/4 mm deep - the lower tissue is visible and the upper dermis seems detached somewhat. It is mainly dry, though now and then exudes clear fluid and less still a drop of blood. No sign of infection (yet). Worth noting is I wore the limb to a GP appointment the other day, whilst using 2 gutter crutches - where almost all weight is transferred through the flat lower arm. I got home and due to cramp the entire time, took it off I had to take my gel liner off too due to pain from the sore and it had bled a little but was very angry and has since stayed the same pretty much - every step is excruciating as the sore feels to be tearing. The GP to be fair isn't a prosthetist so offered few ideas I feel awful moaning to my prosthetist after all the trouble people have gone to extra help and expense offered up to get me the best equipment most suited and available to me. I feel like I owe it to them to explore other ideas before going and saying I'm in a considerably worse position than before 😞 If anyone can offer any advice I'd be so grateful as currently I can barely manage the odd step with it on within the confines of my home. Thanks in advance from a desperate man!
  3. deets

    Having problems with NHS prosthetics in the UK

    Hi desperatewalker! OK well let me start off by saying your not alone. With that you may draw the inference this means there is very very limited funds that centers draw upon for prosthetics and their ultimate provision. To be able to grasp what your issue is could you tell us your amputation type, how long have you been an amputee, what is your current provision, your level of mobility or capability and finally which DSC you attend . Off the bat I can tell you from personal experience that if you can demonstrate levels of capability, need and beneficial results from provision , the there are numerous limbs the NHS can provide to assist in helping you fulfill your potential. If you are ultimately looking for that shiny plug in kit lime the ex military lads get via the NHS then your likely to be wasting your time. Unfortunately there is a real two tier prosthetics provision system in our NHS where ex military ( using redirected public funds from the NHS - into a special funding scheme for ex military only) not only get fastracked access to NHS specialist center treatment but are also given exclusive access to prosthetic componentry that civilian users are not considered for and unable to be provided with. Disgusting and unfair YES of course it is- limb loss is traumatic and devastating regardless of how we end up with it. Many of us do not get the chance to choose a scenario where that risk is increased or demolished - ex military to some extent had the opportunity not to sign up and thus reduce their exposure to such risks - I'm sure most of us civies would love to of had a chance to do something to help avoid our limbloss. Anyway that's a whole nest of hornets for another post and day!!! So let me know about the things I mentioned and we'll take it from there- I'm sure I can help you see it from a rational perspective and realistic viewpoint. One last thing - being the NHS be prepared for the long haul and to jump through the proverbial hoops to get the stuff you need. Do you also have any underlying conditions that caused or contributed to your amputation or are you otherwise fit and well? Hope I've helped a bit and I'll do what I can to steer you in the right direction .
  4. deets

    3r80

    Hi I have been using a 3r80 now for a tad over 12mths. I had a 4bar hydraulic set up prior that let me down and allowed me to fall, and fall hard. I havent fallen with the 3r80 yet, which I think says it all really. This is more good luck than management really ....I will explain. Its got to be properly aligned. Get your dsc to get Otto Bock to come to set up and try the limb with you-they also show your prosthetist how to align, alter and properly maintain the knee's geometry. I got this for mine but unfortunately the prosthetist really wasn't interested and I'm sure she was of the idea she knew it all already. A laser is meant to be used to achieve Otto Bocks alignment, together with a special plate the amputee stands on to asses weight pressure and stance charateristics. All these ensure perfect alignment and adjustments, unique to the amputee. Needless to say my prosthetist is unable to achieve an alignment for me. The laser and pressure plate have never been used since the Otto Bock visit (I don't even think they have the equipment). My prosthetist has even tried using the 3r60 manual--not once but twice--- to adjust it and pulled off the rubber side discs of my limb, looking for the extension assist and flexion assist screws! She is totally unable to adjust the limb and align it properly. She leaves me with a rough alignment which is relevant to other knee set ups and I alter the settings of the rest myself (totally without consent but its the only way to ensure I can use the leg). To date this has been adequate but I know it isn't anywhere near right. However I can comment on the knees features and how it basically works. It is FANTASTIC. It allows foot over foot down stairs, walking on slopes/ramps foot over foot, has a stumble recovery feature and stance yield. Basically, as you put full weight into the knee it yields slowly under pressure--but doesn't 'give' on you. It is like your tensing your calfs and quads to bend down from the knee. You can stand without worrying about keeping your leg locked back to prevent it releasing under you--the yield holds and prevents it. On slopes you 'ride' the hydraulics. Where other knees collapse if you were to bend it under full weight the 3r80 doesn't. With practice you learn to trust the knee to the extent you just walk on slopes as if you had a real leg because you know it will yield and allow you to recover your step if you stumble. These features work a treat but it has to be set up right and your socket completely comfortable. I use a iceross suction socket (my new one is a joke and is going back on Tuesday, where I finally put my foot down and tell her enough is enough, I want the leg setting up properly with Otto Bock again and I want a new socket, preferably not taking 10 weeks to make then not fitting me anymore). I recommend the 3r80 to anyone but make sure you have otto bock come to see you and demand your prosthetist is present to learn their unique alignment method. Also make sure they have the equipment to do it, or you will be going back and forth every few weeks to have adjustments made. Good luck with it.
  5. deets

    Sea Fishing ***** Charter Boats *****

    Hi Deets, Thanks for posting this. My husband took up beach fishing a couple of years ago, very amateur about it but thoroughly enjoys the odd day out. He may be interested in going out on a boat and this sounds ideal for him. I myself am a BK amp but do enjoy going fishing with hubby, i just sit and watch or relax reading a mag. We live in Chester so we are not too far away, mostly go to Llandudno to fish. We visit Anglesey quite a lot, have family in Holyhead Can you give some idea on prices. Thanks Lesley Hiya sorry I havent replied sooner Ive been absolutely shattered after training on my first leg I picked up Monday! I couldn't really tell you what his prices are off the top of my head, other than to say he has just lowered his charter prices due to the lack of money there is about at the moment. He's a really great guy and wouldn't mind at all if you rang with an an enquiry. He might even have some places aboard booked charters available too. I cant book mine just yet because I have to get the nod from my prosthetist first after having it on a couple of weeks. I can't wait though, like your hubby I love it!
  6. deets

    Planning for RAK amputation

    Amazing news. Goes without saying my thoughts will be with you also on the 2nd. Onwards and upwards!
  7. deets

    What to expect?

    Allen is absolutely correct here. I have met countless people over the last ten years who have had fusions of limbs in one form or another. Not a single one of them has had a positive comment about the experience. In fact I'd say 80% approx of those people were left with far greater disabling issues following fusion. I cannot for the life in me understand, why ortho consultants would rather fuse a limb (risking/causing greater complications) than take the decisive step to amputate and allow the patient to rehabilitate to their new life of walking on on a prosthesis--in a bizarre way it is progress having an amputation. Pain is almost immediately a thing of the past, you quickly set into a structured plan of recovery to restart your life (instead of living in an agonising limbo) and in my case, an overwhelming sense of relief and elation. My life is mine once again, and its now totally up to me to get the most out of it. My surgeon tried to explain his reluctance to amputate my leg by telling me it was such a negative procedure to carry out, he was in the business of trying to maintain function of limbs, and in his 16 years as a consultant, he had never had to amputate a leg due to complications arising from failed knee replacements. Initially I sympathised and tried to understand his side of things. Then it suddenly hit me. None of his reasons were in any way related to or concerned with ME or his medical opinion of what was in MY best interests. I could argue, to satisfy his ego, and protect his professional pride, the decision to amputate was unneccessarily delayed. Maybe. So if you've had enough and things are unbearable as they are, I would reject further attempts to fuse and demand the process be started (getting 2nd opinions etc) to electively amputate. But as Allen rightly states, thats just personal opinion based on my experiences. From the outside looking in its easy to say just do it, the difficult decision is ultimately yours either way--but it is YOUR decision remember, not the Surgeons. Unlike the opinion of surgeons (which might have their own self serving spin on it!), the advice you get from members on this forum comes from real life experiences of dealing with and living with issues similar to your own, and how we have subsequently coped after the loss of a limb. Good luck whatever you decide. deets
  8. Please excuse my cheeky use of forum space---I think /hope you'll understand when you read on.--Thanks in advance. Last year I met a great guy by sheer chance who owns a charter boat nr the Menai Strait Angelsey N Wales. Dave the skipper/owner went out of his way to accomodate my disability as it was at the time (fixed straight leg). We went on an all nighter on his boat and we became instant friends. My wife and son loved every minute of our trip out. We covered miles and miles of water finding the best fishing. In the morning at sun rise I drank coffee at the very front of the boat and watched a pod of dolphins swim along side and in front of us. Dave purposely found the pod and showed us how he can encourage them to come close to the boat and 'interact' almost with us. In fact a calf was being tail slapped by an anxious mother as he tried to come close to the side of the boat to have a look at us. Truly amazing----it brought a tear to my eye and fulfilled a wish of mine from childhood. When we returned to the Menai harbour (not Daves usual harbour but we were camping close by) to get off the boat a huge luxury pleasure craft had moored so poorly as to make it near impossible for Dave to get in and safely get us off. But with some great steering ability he managed, and almost carried me from the boat to ensure my safety. Unfortunately, as a power boat passed (after we had got off) causing water disturbance, and Dave's boat hit the 'Lottery winners' boat as I called it. All because my safety was his no1 priority. So, get the picture..? This is a real genuine bloke, an absolute novelty now. I spoke to Dave the other evening, and due to the economic downturn and an unholy hike in his insurance premium for the boat, this could be his last season. This is an absolute bloody travesty. His charter business is barely a couple of years old, and due in part to his remarkable caring and understanding it could all be over. I'm angry, upset, and absolutely determined to 'pay back' the sacrifice he made for me that morning. So please if anyone is keen on sea angling or has never tried it and fancies giving it a go, you will not find a better skipper to take you out. I guaratee that. And he goes out of his way to comfortably accomodate disabled anglers. His actual mooring site allows safe easy access to his boat so is ideal for those of us who maybe have the odd bit missing! On board comfortable seating is available and unlike most skippers, Dave allows his anglers to rest and sit in the wheel house. Charter boat angling is fiercly competitive, ruthlessly cutthroat and outrageously expensive to operate. I've been on many boats and Dave's was something really special. It is wrong he should go before getting a chance to establish the business. The 'industry' as a whole will benefit from guys like him--because the others have to play catch up so everyone benefits in getting a better standard of charter. I'm really sorry I've gone on and on but I passionatly want to help him. Could you get yourselves or friends to form a group to charter the boat perhaps for a trip out? Or, individuals could maybe join my party in the coming weeks (I'm booking a charter myself) so if there are places available why not meet me and put a rod int water too!! Dave will endeavour to accomadate individuals on booked trips and even negotiate a charter of smaller party numbers. So here's the details -- Its Dave Jones and the boat is called 'Dignity' djmarinecharters@hotmail.com Tel: 07716133378 / 01286 88 00 99 Check this site out too..... http://www.charterboats-uk.co.uk/dignity/ and this one.....! These give you a taste of the actual vessel and theres all the info you need on them too. If anyone fancies joining me in around four weeks time aboard Dignity let me know.
  9. deets

    How can this be allowed?

    I know your both quite right----I was just furious when I saw it. So I agree put it to bed.....don't know why I let an uncultured, moralless, 'criminal' decendant torrid excuse for a human being get through to me like that in the first place!!! Thankyou both for rationalising the issue for me
  10. deets

    What's Your Secret...

    I had my first 'bad leg day' yesterday. I thought I was coming down with some bug or other. But now I read this it describes to a tee how I felf. Wow--and I thought I was immune to the negative psychological issues that can arise with amputation. There really is nothing better than having contact with other amputees to help you along the way is there? Thanks
  11. deets

    hello all from an AK

    Hi Kender How the infections showed themselves was really strange. Sometimes I would elevated WCC bloods and others really high CRP bloods. Sometimes nothing. Strangest of all was when I developed sinus tracts which produced riddiculous amounts of puss and sinus fluid but alway swabbed negative for organisms!! Preop i nasally swabbed negative for MRSA. It was only when my leg was taken off and a detailed study of the tissues was undertaken was MRSA found along with osteomylytis, and the skin was positive for cellulytus. I did forget to mention also, the 3rd knee tibial component was so long that 3 months post op when fully weight bearing, it 'breached' the tibial cortex and on x-ray you could see where the stem end had begun protruding the tibia. That really caused some pain. I eventually ended up with 3 sinus tracts which I had 'probed' by a plastics surgeon. This was with a sterile swab stick---2 holes could be probed right thru to the knee prosthesis. Absolutely awful. Don't chance any of this please. I lost almost 10 years to failed knees and infection. I lost hope and my fighting spirit. I don't blame the hospital. I know these bugs can come from anywhere, I'm just greatful to have my life back and to be free from 24/7 agony. Now I love the challenges ahead, learning to walk, everything. I'm positive again and know that I'll get along just fine now. Luckily I haven't had any sinus tract issues. My CRP level was far below the level indicating infection so I am glad you mentioned that yours would do that to. Knowing that your story is what I have to look forward to is exactly why I want to cut to the chase. I have had 4 years of pain and mobility issues so I can relate to how you felt but I think that 10 years would have made me mental. I think some of the reason that I have accepted amputation is because then your struggle is walking again and there is light at the end of the tunnel for that battle. Before amputation many people don't have a light at the end of the tunnel, they don't know if they will ever walk again with their bio leg or if they are going to live with a useless limb or will they be able to amputate. I think that once the amp is done there is one path and not all the uncertainty. You can actually put your energy into one goal. I can not wait to have that feeling. Right now I am just stuck, with no control over the outcome and at the mercy of whatever my knee has wrong with it. Good luck getting everything back to normal. DJ What you describe is exactly how I felt. Only you know the pain, and describing it is difficult. In actual fact you are in total control. Its your limb, your life its taking over. If it is infected and you don't believe further revision or remedial surgery will help the issue then demand an independent second opinion. This sounds cinical, but when I made it clear I wasn't interested in sueing the surgeon or hospital, I found they became instantly more willing to consider amputation as an appropriate course of action. I had to get an ortho second opinion as protocol required and this was when I got a full and frank explaination of what had gone on and what I could expect if I didn't have an amputation. Obviously everybody is different and knees fail for all manner of reasons, but infection in the knee is increadibly difficult to treat and successfull revisions are few. It sounds bizarre doesn't it that amputation should become a 'successful' outcome for us??!! But it really did work out for me.
  12. deets

    How can this be allowed?

    Hi I am a member on the limbless association forum and found a post about this disgusting individual posing as a journalist. I'm sorry if this has been covered previously on this forum. If not please take a look at this http://www.theherald.com.au/blogs/jeff-corbett/inconsiderate-amputees/1746447.aspx Hard to believe in 2010 such pigs exist, let alone be given a stage from which to spout their predjudice filth. I never wish ill of others and would never before wish another person to be robbed of a limb--til now that is. Utterly shocking stuff
  13. deets

    New to forum

    Hi Kimberley, welcome to the site from a fellow neewb! Do you have any arthritic involvement of the wrists or elbows? Reason i ask is have you ever tried 'gutter' crutches? I use them all the time and find them much more comfortable. Just a thought. Also silly qestion but its definately osteo athritis isn't it and not rheumatoid? If it came to it I know knee replacements are hugely more successful in patients with osteo as opposed rheumatoid. I have rheumatoid and know how horrible any form of athritis is. I get my first prosthetic limb on Monday ( I'm AK too) and cant wait to take the strain off my other knee! What has been your problems in the past with prosthesis if you don't mind me asking?
  14. deets

    hello all from an AK

    Hi Kender How the infections showed themselves was really strange. Sometimes I would elevated WCC bloods and others really high CRP bloods. Sometimes nothing. Strangest of all was when I developed sinus tracts which produced riddiculous amounts of puss and sinus fluid but alway swabbed negative for organisms!! Preop i nasally swabbed negative for MRSA. It was only when my leg was taken off and a detailed study of the tissues was undertaken was MRSA found along with osteomylytis, and the skin was positive for cellulytus. I did forget to mention also, the 3rd knee tibial component was so long that 3 months post op when fully weight bearing, it 'breached' the tibial cortex and on x-ray you could see where the stem end had begun protruding the tibia. That really caused some pain. I eventually ended up with 3 sinus tracts which I had 'probed' by a plastics surgeon. This was with a sterile swab stick---2 holes could be probed right thru to the knee prosthesis. Absolutely awful. Don't chance any of this please. I lost almost 10 years to failed knees and infection. I lost hope and my fighting spirit. I don't blame the hospital. I know these bugs can come from anywhere, I'm just greatful to have my life back and to be free from 24/7 agony. Now I love the challenges ahead, learning to walk, everything. I'm positive again and know that I'll get along just fine now.
  15. deets

    Planning for RAK amputation

    mickeybucs i'm amazed your surgeon won't do the amp!! Mine had no quarrels doing it, in fact I'm so glad I asked him to do it because he did over 200 ak amps whilst in general surgery training which I guess stood me in good stead! I'd love to be able to comment about the Ertl proceedure more, I thought the proceedure had a much greater sucess with bk candidates--obviously I need to read more on it. I really do believe as do most it appears, that amputation is the best way forward for you. My best advice is to like me make sure any surgeon has extensive experience doing ak's I wish you all the best though.
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