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icarus0211

Looking for an AKA amputee to have a chat with

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Hello,



It looks like that after 10 years of struggle, 33 surgeries performed I will have to give up my left leg above the knee.


I am looking for an AK amputee to have a chat about all pros and cons before I make the final decision. Preferably someone using a GENIUM or C-LEG knee. I am quite knowledgeable about the subject (including osseointegration) so I am not going to waste your time.


I am 56, live in Croydon (UK) and happy to travel even up to 100 miles radius from my home.



I am looking forward to shake your helping hand friends



Icarus


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Hi Icarus

Welcome to the forum here and sorry to hear about your struggles you've had with your leg.

I am not an AK amputee (am b/k) but do live in the UK and would recommend if you haven't done so already, to get in contact with or look on the LA (Limbless Association) website http://www.limbless-association.org/ which has info and also operate a peer support network, who may be able to link you with an a/k amp, who has been down a similar route to you etc. etc.

Also note that you live in Croydon and wonder if you are aware of the Douglas Bader Rehab Centre at Roehampton which is not too far away from you, again am sure they would give you advice and is somewhere where you would meet other a/k amputees. There is also a local Limb User Group that may be able to help you http://www.rlug.org.uk/.

Would mention that there are probably not too many NHS amputees using the Genuim at the moment, although the C-LEG is becoming more available, so you may need to cast your search a bit further, perhaps via links to private centres or the military guys at Headley.

Sorry if this hasn't helped much, but wish you luck.

Ann

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Thank you Ann for your prompt reply.

As you mentioned not to many NHS amputees are using Genium. I know that because I was already in touch with the LA and met some guys but with the ordinary prosthesis. I have tried also to get into someone through a private prosthetists (Dorset Orthopaedic) but with no luck.

I think now I will try Roehampton. I forgot about them and you refreshed my memory. Thank you.

Kind regards

Jacek

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Hi Jacek

It probably would be worth visiting Roehampton, especially as it is so nearby. You don't mention if you are going down the private or nhs route, and they might differ a bit, as it might do wherever you are treated, but in the first year or so, whatever type of prosthesis you use, you will have a fair few socket changes, because your stump will be shrinking, and you will discover that 'socket fit' becomes very important whatever type of prosthesis you use, it is all very individual and whats best the one person might not be so good for another, so bear that in mind when you are talking to different people.

Good luck with it.

Ann

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Hi I am 43 year old female in Tyne and wear I have had many years of a dislocating patella so two and half year ago my surgeon decided only thing left was full leg fusion biggest mistake ever.my leg is fused straight no bend at all and 3 inches shorter,was told would be pain free.yeah right who was he kidding now two and half year on and swallowing 19 pills a day I have decided I want a aka with backing of GP we are now trying to find a surgeon to amputate as surgeon who fused won't would love to chat as in same position although you seem more knowledgable hopefully chat soon.......

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Hi Icarus,

I have read your listing. I live in the UK, Sutton Coldfield. I am an above knee amputee left leg since 16 Jan 1012. Before having the leg amputated I had undergone 16 lots of surgery on the knee joint from 1991 to 2012. I basically dislocated my left patella whilst on a shooting range during my military career. In the march 2011 I had a total knee replacement which failed, left me dependent on morphine, the knee was locked straight and caused excruciating pain, to the level of torture.

It was my complete choice to have the leg amputated, this was carried out at the QE hospital Birmingham. Without going into all the history of the leg amputation itself, I basically was pain free. 

Rehab is still ongoing to this day. I have had major problems with one thing and another. The most important was fracturing the left neck of femur. This happened as a result of a fall. This took eight months to heal but a side issue to this was a slipped myodesis. This has caused me major problems, stump is now in constant pain when wearing my Genium X3 leg. The leg itself is not all it is made out as, if anything it is bloody heavy and has lots of glitches, I hate it.

I am happy as an amputee but not at all happy with the rehab and services offered with rehab. Within six months of having my leg amputated to rehab stopped and it became extremely difficult to get help and support. In the end I got my GP to refer me to a different rehab centre at Wolverhampton.

I know this sounds like doom and gloom but it is a story of two halfs. First half is fantastic, to be pain free and free of morphine. Second half is negative, prosthetic failures and extremely poor rehab.

If you would like to meet up for a drink and chat then I would be prepared to travel half way. Just let me know? 

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