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Heather Mills - Amputee Forum

Parva

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About Parva

  • Rank
    Newbie

Profile Fields

  • Membership Type:
    Amputee
  • Amputation Type:
    Full right leg
  • Amputation Date:
    11-09-2011
  • Amputation Cause:
    Bone cancer
  1. Parva

    One of my stories

    Totally agree, I can't imagine the cost that is going in to making MkII of my new 'leg' since the first one didn't quite sit right. The MkI version I am using in physio to learn how to 'walk' with it whilst I await the better fitting MkII. Meanwhile, I better lay off the KFC's and stuff, I'm piling the weight on due to inactivity. :(
  2. Parva

    New to forum

    Thank you Jane and I can fully sympathise with your rationale. It's only when you've been in constant pain for such a long, long time that the action required to be done with it comes as something of a relief. I'm sure we all wish we had all of our limbs and sure, my amputation was pretty drastic but I don't miss the constant pain I was in before. As you said, I'm sure that many wouldn't understand our reasoning if amputation is actually an option rather than absolutely necessary but it's only when you've suffered constant pain for such a long time that you can understand why it's often an easily made decision. :)
  3. Parva

    New to forum

    Cheers Cheryl, that's much appreciated and yes, we do seem to share something of a rarity here I guess. :) I don't know what sort of pain Steve is in with his leg at the moment but for me personally it was something of a relief to lose the painful leg. Sure, the post-op pains weren't exactly great but as I recovered it was nice to lose that constant, often agonising pain that I was in so it's not all bad. Adapting to life on one leg wasn't quite as bad as I thought it would be either since my one good leg had been doing pretty much all of the work of both legs so the transition was a lot easier than I imagined. Ultimately if it's a life saver then it's got to be done and you just have to adapt and get on with it, depression is not an option! :)
  4. Parva

    New to forum

    Hi Steve, I'll reply in more detail to your PM but according to my physio mine too was a HP op, I guess I never really saw the technical term for it so just assumed. :)
  5. Parva

    New to forum

    Thanks for the warm introduction guys (and gals). :) Cherylm, you are indeed correct. I had been in so much pain for such a long time that finally getting rid of that constant pain was actually a huge relief. The op itself has left some pain in the form of 'phantom pains' but these are much more manageable than the constant bad back and leg, I was popping pills like sweets! The biggest regret is that the surgeon said that had the cancer been detected before the bone finally snapped it was likely they may have been able to save the leg, when it broke it just spread the cancer to the point where the leg had to go. At least when I say "The holiday cost me an arm and a leg" I'm actually telling half the truth. :)
  6. Parva

    New to forum

    Thanks Marcia. I had little choice in the way things ended up but ultimately decided that it was pointless going on a downer about it, it's done and I have to adapt. I either get on with it or go into full blown depression and give up on life. That is not an option to me, I have a son who's 26 and a 21 year old daughter who is pregnant with my as yet unborn grandson. Not sure on the grandad (or grandpa) title at 45 years old but I certainly don't have time to think of the worst in my life. :)
  7. Parva

    Newbie facing hemipelvectomy

    Hi Steve, I have just posted my introduction here somewhere so that will give you an idea of how I ended up with my amputation which I call a hindquarter amputation but I guess hemipelvectomy is the same / similar. I'll give you the good and the bad of my experience. Firstly, the op itself is really nothing to fear. In fact, they get you setup with all the wires and stuff before you go into the operating room and when they give you the knockout drugs, WOW, it was fantastic! Hell, I even offered to have the other leg removed if they would knock me out like that again! When I awoke I felt fantastic, really well rested and as a bonus could feel or do nothing from the chest down. For someone that had been in pain on my right thigh / lower back for so many years this felt like heaven (see my introduction post). The op is nothing to fear whatsoever. Post op I was stapled together with god knows how many staples, it looked like a big zipper on my side! These came out a week or so after the op and the only issue I had was a pooling of stale blood in my pelvis area that leaked from a small, unhealed opening from the area that was stapled. I had a bag stuck over the hole that collected this blood and actually used to open and drain the bag in the shower (not sure I should have but hey ho). :) Obviously this had to be changed every day or two anyway and the staff at Birmingham Royal Orthopaedic were absolutely fantastic. This blood drain was obviously bad at first, the bag would need to be emptied at least once per day initially but it did eventually slow down over time. The downside is that it was almost March (op was November last year) before it finally stopped so it was a bit of a nuisance. The pain after the op is pretty considerable when getting into a wheelchair and mobilising but I refused to let this stop me going out for a smoke. I had to sit on a pillow, no way could I manage without that, especially since my backside was now misshapen (smaller on one side than the other). As soon as I returned from my wanders I was always going "Nurse, can I have an OxyNorm please". That's a morphine tablet. The pain is quite bearable though and it does lessen surprisingly quickly. Be prepared for upto a month in hospital after the op though. In my case I was in Birmingham for just over a fortnight before being transferred to Leeds, op was 11/11/11 (wow, never realised the date before) and I was released home on 2/12/11. So that was the op. Now the bad bits. Aftercare, there is virtually none! Once released you are pretty much left to it. Fortunately for you, you have found a place to find things out before the op, I didn't have that option alas. Next problem is phantom pains. Now these are more of an annoyance than pain on an agony scale. You'll find that if you sit idle, unoccupied with a task that you experience what I can only describe as an electric shock or like someone trying to squeeze your 'foot' hard. You can feel exactly where it hurts, foot, calf, thigh etc. It's very annoying and if you sat watching me glaring at this PC screen but not really doing anything you would see me 'jump' in the wheelchair now and again. This is me getting a jolt in part of my leg! Another downside is actually being able to sit down. I was lucky enough to get a very expensive cushion supplied with my wheelchair that has like teabag air modules inside five different compartments. I have managed to remove or add these teabags in the right areas so that I can actually sit comfortably because my backside is no longer totally symetrical. To give you an idea, I tried driving the car without the cushion and after 30 minutes of driving I was in too much pain to continue as I was only sat on one side of my bum. When I tried with the cushion I was actually able to make a 2.5 hour drive! :) That said, I'm laid down for 8 hours and mostly sat in my wheelchair for the other 16 hours. Your bum will ache / feel sore before long. Again, this takes time for your body to adapt. I can do the full day in the wheelchair quite comfortably now but I still have to change position occasionally and going to make a cup of tea is a good excuse to get up and stretch. Another point to note is your bed. Ideally, you may be better asking for a hospital bed. I came home and had a monkey bar delivered for my kingsize double, I would be utterly lost without a monkey bar, even now. After a few days in the kingsize I decided that I needed the ability to be able to raise and lower the bed and stuff, my kingsize was too high and it proved very difficult to get in to / out of. Another major issue with this level of amputation is sleeping on the side where the leg has gone, it is incredibly difficult. So difficult in fact that I sleep almost solely on my left side (it was my right leg that was amputated). The downside to this is that your left shoulder aches almost constantly, or mine did until fairly recently, I think that too has now adapted. When you first start sleeping after the op it feels incredibly wierd. You are so used to the weight of the thigh of your now gone leg that it feels like the amputated leg is 'floating'. It really is odd. Worse still is if you try sleeping on the side of the amputation, that feels horrible, you feel like you've sunk into the bed as there's no thigh there. Worse still, because you're laid on all of those nerve endings it triggers the phantom pains big time! Not fun at all. I can now have an hour or so on that side before fully waking but this is only achieved by rolling over onto a pillow to sort of trick my other existing leg into thinking the thigh is still there. Again, this takes time and is a recent development for me. Finally, driving. If it's your right leg you're losing then you'll be needing a left-foot accelerator. I have one fitted and this can be flipped up which in turn releases the right-foot pedal for my son to drive. Be warned that driving left-footed initially is very scary and daunting. I was an extremely confident driver prior to the operation but since then it has taken some time to get that confidence back and I'm still a way off. The biggest problem is if you turn the music up or allow yourself to be distracted in any way, you forget about the left foot thing. A few times now I have come very close to having a minor collision! It is now slowly becoming second nature but like everything else, it takes time. On the benefits front you may well qualify for Disability Living Allowance and this can be claimed whether you work or not, PM me if I can help you more on that front although I suspect there will be plenty of guidance here anyway. Oh and I'm also in the process of getting a prosthetic but trust me, this takes a lot of hospital visits (physio especially) and it is one big and heavy thing! You also will never be able to walk without crutches, it is more cosmetic than actually performing any real function alas. Any questions you have, fire away. :)
  8. Parva

    New to forum

    Hi folks, just arrived here so figured I would tell you a bit about myself. I'm a 45 year old guy from Leeds in the UK and am new to this whole amputee thing. I had a hindquarter amputation (technical term) which means my whole right leg and a fair chunk of my pelvis due to chondrosarcoma (bone cancer). How did I end up here, well it was a bit of a rollercoaster... I had been suffering leg pains since 2002 with the first recorded visit to the doctor about this in early 2004. Over the years this pain got much worse and more persistent, no amount of painkillers seemed to help and I had to take amitriptylene to help me sleep on a night. The prescribed painkillers and Amitriptylene doses went up and up until the last 18 months or so when the pain really peaked. I walked with a permanent limp and even had to have sicknotes for 3 months on two seperate occasions, such was the pain. Alas my doctor just kept sending me for physio and despite my continued protestations that physio was actually making it worse this continued. Indeed, just days before I went on holiday I had a doctors appointment and a physio appointment and I said to both that my leg had swollen. Both looked and decided that I was imagining it. I knew it was swollen compared to the other leg. Anyway, a few days after this I had a holiday booked..... So, 28/9/11 I went for a fortnights fun and frolicks to Cyprus. Apart from the pain in the leg all was well and I could dampen the pain with the all-inclusive drinks. On the day before I was due to fly home I'd had a fair amount of cocktails and decided to go on a helterskelter waterslide. Down I went, landed in the pool and despite swimming as best I could I didn't seem to be getting anywhere. I was pretty boozed up so didn't panic at all. Next thing, the lifeguards are in and drag me out. They stand me up, I put my right leg forward and bang, down I went. So they tried again, same result. Ambulance came and took me off to a clinic / hospital facility where I had an xray and it was discovered that my femur had broken. As the effects of alcohol wore off the pain kicked in and that really was no fun! So, after several days of being hospitalised I was sent to Larnaca hospital for an MRI. This revealed something very wrong going on in the femur area though I was never actually fully told at the time what was happening. They also kept me pumped up on drugs and stuff, such was the pain. I'll never forget the day I totally tripped out and accused the hospital staff of being kidnappers and tried to make my escape sorta crawling across the floor! Anyway, it was decided that I needed to be sent home for treatment and after 10 days in hospital there I was put on a flight home with a nurse to transport me, I was laid on a stretcher above the last three rows of seats at the rear of the plane (seats had backs folded down). From Manchester airport I was taken to St James in Leeds who decided they didn't have a bed for me so I was instead taken to Leeds General Infirmary. Having been awake since 6am, travelling since 10am and finally put in a bed at 2.30am I was somewhat knackered! Anyway, after 10 days at Leeds General Infirmary they decided that I needed to go for specialist treatment at Birmingham Royal Orthopaedic Hospital so I was taken there. Whilst awaiting a biopsy I got talking to the guy in the next bed who had a similar problem and we both discussed the possibility of losing the leg. We both agreed that that would be preferable to losing our life and we would do it! Well, he had his biopsy first and being in the bed next to him I heard the surgeon giving him the result. Basically, the cancer had entered the base of his spine and there was nothing they could do. :( Off he went home. I had my biopsy on the 5th of November (yup, bonfire night) and got the results a few days later. "I'm afraid you have a chondrosarcoma grade 3, if we don't amputate then it will spread to the rest of your body". I was gutted. However, after 10 minutes of tears I reminded myself of what I had said earlier and how much worse it could have been and came to terms with my 'loss'. So on the 11th of November I had the op. In the recovery room after I came around and thought "this feels absolutely supurb!". I had been given an epidural. God it felt good, for the first time in years I was in no pain at all, it felt fantastic in fact! Alas it didn't last long as they had to withdraw the epidural slowly and sure enough the pain of the op soon became apparent. I didn't however allow this to beat me! Just a few days after the op I was in a wheelchair and going some distance to get outdoors, wow it felt good, some freedom at last! And I could smoke again (silly boy)!!! I was transferred to St James Hospital towards the end of November and on the 2nd of December I was brought for a home visit with the occupational therapist to see what modifications were necessary in my house. The OT's (there were two actually) witnessed how easily I got around on one leg, even getting up and downstairs. They had a workman arrive whilst I was there to add some grab rails in the bathroom, a second banister rail and things like that. It felt so good to see home again, even now it makes my eyes water thinking of that moment. I had left home for a 2 week holiday and here I was over 2 months later and minus a leg seeing my home once again. The OT's decided that I was capable of managing with the help of my son and after giving them some puppy eyes agreed to discharge me from hospital that day! So, that was my rollercoaster! Since then I've got a car with an accelerator pedal on the left (it flips up and the right one drops for my son to drive it normally), I've had a stairlift fitted and my bathroom is now a lovely wetroom with a seat bolted to the wall for me. I cannot begin to explain the difference all of these have made to my life. On another note, solicitors are currently persuing a case against my (now ex) doctor for medical negligence. Apologies for the loooong, boring post but there you have it. Cheers, Dave.
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