July 2, 2015 at 12:13 pm #2143330110
After having numerous operations on my left knee over the past few years, including posterior cruciate recons, osteotomy, and now having had two TKRs of my left knee of which the second has already had two minor revision surgeries, I am considering elective amputation above the knee.
I am still in constant pain with my left knee post further revision surgery of my second left knee TKR. This time the knee itself is still intact but the pain my badly damaged soft tissues and tibia are causing me from the implant itself and the neuropathic pain issues I am at the last resort as don’t want to continue my life in this pain and taking so many pain killing meds including a good dose of morphine every day.
After my latest visit to my Consultant Orthopaedic Surgeon, who is one of the best and most renowned knee surgeons in the UK, he has advised me that there is no more surgery intervention that can be undertaken on my left knee TKR which is going to help my constant ongoing pain both when moving and at rest.
I have discussed what options are open to me with my Consultant including both left knee arthrodesis and amputation.
Arthrodesis to have my leg fused straight would now not be suitable due to amount of bone stock left post 2 TKR surgeries and the complicatons and risks attempting this would cause, and leaving the damaged soft tissues and tibia in place, would lead to this option not working and I would still be in pain.
Therefore, the only options left open to me are above knee amputation of my left leg or continue as I am, which in my mind only leaves one option as my current condition leaves me immobile and in so much pain taking so many pain killing meds. Therefore, I am considering above knee amputation and my Consultant believes this would be the best option for me at my age (40yrs) rather than wait 1–15 more years when such surgery may have greater impacts on my body or other joint failures in my body over this time might mean that I couldn’t have an amputation at a later stage.
Therefore, my Consultant has referred me to his colleague for a second opinion to make sure he hasn’t missed anything and above knee amputation of my left leg is the best option. I am also waiting for a referral to the RNOH at Stanmore to get another opinion to make sure amputation is the only option available to me.
If there is anyone out there who has any thoughts on this for me, any advice they could give me, any one with an above knee amputation who could give me advice on recovery and life post surgery, I would love to hear your thoughts and comments.
Thanks Spacious.July 13, 2015 at 12:52 pm #2143330268
Sorry about your situation and reading between the lines it seems that there is only one way forward and that is above knee amputation …………it’s something that would give me nightmares just thinking about …………..Fortunately or unfortunately I lost mine as a result of a RTA and had no say in the matter so I cant really give or offer any advice.
One of the things I have picked up over the years from various people and sources is to get yourself pain free for a day or so before the operation so (if you are lucky) you wont get bothered with the dreaded phantoms pains …its something that you NEED to talk about with your doctor / consultant before your operation .
Other than that I cant really offer you any advice , other than to let you know losing a leg doesn’t have to be the end of life as you know it , most of us still lead normal lives , work full time , have a good social life , hobbies etc. etc. .
Saying all that Life without a leg isn’t a walk in the park there are lots of problems that you will have to overcome some big some small but If the amputation is successful and you get to be pain free it must be worth it , but again never have been in that position I wouldn’t know for certain .
It’s a shame that all the amputee forums are so quite nowadays, there was a time when you would have got loads of good information by now .I really don’t know where every one has gone.
I keep a small website that has a bit about my amputation and how I managed , its mostly about the walking and hiking that I do now days but there is a small bit about being an amputee that might be useful for you to read …link
Other than that I wish you well in your difficult choice , if you have any questions please feel free to e mail me and I will do my best to answer .
MickJuly 24, 2015 at 10:48 am #2143330277
hope all is going wellJuly 27, 2015 at 2:37 pm #2143330278
Hi ,There hope your well.
I had a below knee amputation on the 9th July 2015.
I spent 13 days in hospital and was looked after by some great NHS Staff.
I was involved in a RTA non fault back in 2005.I was moved to Broomfield Hospital so they could save my left leg.
I had my left leg reconstructed,and large skin grafts taken from my right leg to re-cover the skin loss. then had many more ops to relieve pain and very bad foot drop.
my ankle was later fused.
I was plagued by massive swelling and pain over the years.
I walked with a stick and had a bad limp.
My left knee finally grew tired and knackered,which resulted in more pain.
So I had 3 screws removed just below my knee and some other work.
A total knee replacement in march this year with an agreement to amputation below knee followed.
Amputation took place on 9th July 15.
Home on the 22nd July so a total of 13 days in Southend Hospital.
Great surgeon ( Mr Brown) who had to over come many complex problems!.
Also with great staff on Balmoral Ward.
Was amazed that I had less pain! considering my amputation!
The only real pain now is phantom pains! and I wont lie!, boy they can be bad.
they are slowly becoming under control.
I was up out of bed next day,transfering bed to wheelchair to the toilet.
Never washed in bed only in the wash room.
by 5th day was standing on a ppam aid.
by the 13th day had already been walking with the ppam aid using parallel bars, doing other exercises.
Had been to walking class during my stay at the hospital and meet some great people and physio’s.
Went back on Friday24th for wound dressing change, then back down for walking class,was back on the ppam aid done my exercises,then walking up and down the bars,then with a zimmer frame within the bars.
Then freedom with the zimmer frame a walk round the gym!.
Back tomorrow for dressing change and walking class! Bring it on!!
11 years of pain and dragging a dead weight about,Just want me new leg and move on with life!.Am not pain free! but I feel better and full of hope!!!!
Was a wise decision for me!
There lots more to do and its a long road back.
best of luck with what ever you decide!
TrevorOctober 6, 2015 at 12:19 pm #2143330428
Hi Mick and VMax Rider.
It is good to hear your stories and gain your advice and knowledge in the lead up to my above knee amputation. Sorry I haven’t been on earlier but website doesn’t seem good at letting you now people have responded.
I too am surprised at how little use and how few people there are on this forum, may be they have moved to Limbless Association forum or others.
I now might have my amputation this December, or if not soon in the new year, that’ll please the wife.
Hope your both doing well.
Will be back soon.
SpaciousDecember 14, 2015 at 6:50 pm #2143330544
Your story sounds very similar to mine. Its beyond frustrating. But don’t let anyone fob you off. if this is what you want then don’t accept ‘No” Trust me I’ve heard it too many times.
I had sepsis as a child and my knee joint was malformed due to it being not diagnosed. I have had well over 30 operations and sooo many procedures to try and fix it. One of the operations was performed on me to young as i was still growing. So after all the other complications I was told that the only options were to have my leg fused or amputation. But then my orthopaedic consultant just kept putting me off (PS:ortho’s really don’t like amputation on their job sheet) as i had now developed CRPS/RSD 3 and he claimed that i would be in even more pain afterwards.
So i went off and did lots of research via forums such as this around the globe.
I went through my disablement service centre and got them to agree to amputate above the knee.
On the 13th August 2015 i had my amputation. The operation went amazingly well. It took 2 hours and i was in hospital for 3 days and then i was back home doing all the exercises that my physio had set me.
I now have my life back!!! Yes I’m still in pain but not as bad as before the operation.
I still have CRPS/RSD but it is manageable. I do have ghost foot but my counsellor helped me with visualisation and relaxation techniques.
I would say if your are going to have your amputation i would highly recommend 6 months of “Pre-hab” to get your hips, bum, back and core muscle strong. As they are your power supply to using your new leg.
I came out of my operation and within 2 wks i was up walking in a practice leg called a Femourette by Ossur. I had my stitches out 2 wks post op. Thanks to my pre op exercises. Trust me do those exercises. It really helps you bounce back quicker.
Make sure to rest after physio as it really does take it out of you.
Another things that is a must:
get your pain management doctor to give nerve blocks around a week before going in.
Make sure to take multivitamins with iron
Vitamin C effervescent tablets
Make sure you have your normal pain meds in order
Make sure that you get your home future proofed too. like a shower board or seat, grab rails near the toilet and other mobility aids to make life easier.
One more thing to save your good leg, get a wheelchair as hoping around really does damage your hip and knee in the long term.
You have to build up your tolerance in wearing your prosthetic leg. So don’t rush and make sure to stretch your muscles after wearing it as i could lead to hip contracture (which is not nice).
I know I’m still very new I’m only 17wks post op but i feel stronger and that i made the best decision for me. I know its a big decision.
Join Limbless Association as they are fantastic help and join prosthetic/amputee groups near you as they can give you tips on how to cope and get the best out of your new life as an amputee.
I hope this reaches you well and that some of my tips can help?
Sending you the very best
PoliDecember 18, 2015 at 1:04 pm #2143330546
Thank you very much for your response, experience and suggestions.
I’m glad you have your life back and you seem happy with the outcome of your above knee amputation
I have finally got my new Consultant to agree to above knee amputation, after my old Consultant just retired leaving me in limbo, and am now planning life towards my amputation in the next six months.
I have joined a gym one month ago to work on my upper body strength for transfer movements etc. and also working on my core stability, hips, pelvis and remaining limb strength. I am determined to be as physical fit and strong as possible pre surgery to aid my post op recovery.
Your information on your recovery progress is priceless and very useful in planning my own, so thank you.
If you have any further details of other online forums to this one, and any useful online websites etc. to find out further information that would be very useful.
I am now just awaiting orthopaedic and plastic consultants to get their diaries organised to fit me in. In the meantime, my Consultant is arranging a visit for me to Bournemouth or Portsmouth Disablement Services and Orthotic centres so I can find out more and discuss future prosthetics.
I am also awaiting delivery of a NHS wheelchair, to aid me pre and post op, to prevent further damage to good leg and back pre op.
I wish you further success in your recovery and use of prosthetic limb.
MartinFebruary 19, 2016 at 11:07 pm #2143330653
That’s fantastic news!!! I’m so happy for you and it sounds like you are getting everything in place getting yourself ready pre op and for you needs post op. You’re are doing the very best getting your body strength ready as it really does help going into the amputation strong as it will mean that your muscles won’t waste so post op you will be up walking so much quicker. I’m so glad that you’re getting your wheelchair before the op as I’ve heard that it would be much harder post op as with the cut backs that are going off in the NHS they are allowing amputees either a leg or wheelchair. So with you getting your wheelchair now will mean that your wheelchair will still be serviced and renewed… And that you will still be allowed your new legs. I would also highly recommend downloading the Ottobock fitness app as it has targeted exercises you will need to do post op and it also has great exercises to do with your new leg when you’re at home. I would make sure to stretch out your hips after physio sessions wearing your leg as your hip muscles can go into spasms and cause hip contractures (which are no fun). When you meet your prosthetist make sure to explain what your future goals and what you want to achieve with your new leg as this will help them get you a leg that you can grow in strength with. (I.e country walks, cycling, running, playing football with the kids, ski-ing etc) I will give you a heads up tho… The casting process is funny and I would advise leaving your dignity at the door as the process needs access around your groin and pressing on your bum cheeks to find the ischal bone ( that bone-y bit of your bum when sitting) as being an above knee you put your weight through that bone when walking on your prosthetic not through the end of your stump. (That baffled me at first) you will be surprised at how fast you will progress. I would also film your physio sessions so you can see how far you progress with each day. One downside is that whilst your still using your wheelchair try and do some seated cardio sessions as the weight creeps on quickly. I found some on YouTube which has really helped but when you’re up on your leg you will burn calories fast. I know that after a good physio session I knackered and it surprising how tired you get from being up on your leg so pace yourself and take it a day at a time as some days you will need a no-leg-days to recover. I’ve found that looking on different amputee forums help with tips and tricks to being an amputee. The ones I use are this site, amputee coalition in the US, limbloss association, heather ills.eu (I’m not a fan of hers but the forum on there is helpful) I also watch the amputeeOT on YouTube as she is brilliant at explaining things in a non medical way. I would also join the local amputee/ prosthetic user groups as they can be really helpful. I know this seems a lot of info all at once but trust me these tips I’ve picked up along my very short time being an AKA. Ooo if you drive you may need to be retested or if you already drive auto you just need to inform the DVLA and have your license updated and let your insurance know too. DVLA took 3 months to get my license back which was frustrating but if you call them before you send your license in they can update your details so you can still drive whilst waiting for license to come back in the post. That is after your doctor says it’s safe. I was back driving after a month which feels amazing. But putting petrol in was a pain in the **** so make sure to take someone with you so they can go inside to pay for you. I hadn’t even thought about that part until I pulled up at the pump….Doh! Anyhoo I’m scared I’m starting to ramble on so I will leave all the above with you I hope any of my tips help. Once again I’m over the moon happy for you I really know how frustrating it’s been for you to get this far.
I hope your operation date comes through very soon. (Ps make sure to get your nerve blocks done a week before too)
I’m sending you the very best wishes and good luck for your operation. I’m sure you will do fantastically. And keep us all updated and if you needs any info please get in touch.
Good luck!!!March 17, 2016 at 7:56 am #2143330675
Thanks again for your valuable insight and information. It is very helpful and useful and am taking it all onboard.
I now have my amputation pre Op appt with the prosthetic clinic next week, and my surgeon has.told me she will make sure my amputation happens as soon as possible after.
Apparently I have one of the best plastic surgeons doing my amputation, and she has promised to assist me as.much as possible and to help me get the right prosthetic leg I want.
I hope your recovery continues a pace and that you are doing very well?
I will keep all updated.
MartinMarch 21, 2016 at 7:52 pm #2143330691
Oo WoW! Thats fantastic news.
You’re right after i had my pre op test i was in within ten days.
Don’t worry it won’t be long now after all this time of waiting and fighting.
It sounds like you have got a really good team around you now, especially having a top plastic surgeon doing it for you. I had mine that way and my scar is so neat and tidy compared to my other previous operation scars. Im sure there will be no stopping you afterwards.
Im still doing ok having problems with my socket but that is the norm in the first 2 years as our stumps change so much. hopefully that will be all fixed within the next couple of weeks and then i will be back on full force with walking training. so I’m doing what you are doing by hitting the gym 🙂
One last thing when you get your new leg fitted if it hurts in anyway tell your prosthetist so they can adjust the socket.
Don’t try to put up with it as it can cause skin breakdowns and blisters which mean you can’t wear your lovely new leg.
Prosthetists have lots of magic tricks to help and if that doesnt work they will just recast you.
I hope that everything goes fanatically well for you as I’m sure it will.
Keep us all updated.
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