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Safcbabe's rough journey - fusion to amputation

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I'm so sorry to hear of all you have been going through. I don't have anything to offer except my support and my prayers for you.
 
I am so sorry to hear about the situation - I have faced similar issues following a knee dislocation 4 years ago that did untold damage to my knee as well as the rupture of all 4 major knee ligaments. Fusion and possible amputation were both mentioned as possible outcomes in my case.

I have been luckier than you as I had a stabilised hinged knee prothesis fitted with long stems into my femur and tibia to increase stability. It remains a long road to recovery as I am having to learn to walk again and have suffered from a pain inflammation of the bone marrow in my tibia which is inflamed by the long stem inserted in the canal.

I think you should respond to @Josephine - either here on the thread or by private message with details of your surgeries, doctors and hospitals - she many years of orthopaedic experience and many contact in UK hospitals - so she might be able to recommend something to help you

Take care xx:friends:
 
@Safcbabe I want to welcome you to Bonesmart. We all really do care for one another and we care for you and what you are going through. I am so very sorry for the long frustrating journey you have been on. Prayers coming your way.
x x
hopefaith
 
I saw your thread a couple of days ago, but was afraid to read it. I had a knee replaced that was infected, so new in a lot of pain with the concrete spacer like busy lizzie. There is a remote chance that I could loose my leg, but the whole infection thing is a rare side effect. Please do get a 2nd opinion. Should you choose to go through with an amputation, please make sure that you get the best doctor possible. I have worked with several people with amputations. It is no fun for anyone, but the people who have the worst time are those who insisted on saving as much of the limb as possible. If you don't have good, healthy, skin at the end of the amputation, it will be a nightmare trying to use an artificial limb. We all will hope and pray that you find a really good doc who has a better idea. Let us know what happens. You can whine and complain here; we understand and are ready to support you. Please also remember that, by writing about your experience, you will be helping others.

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@Safcbabe It is awful that you are going through all of this. You are in my thoughts and prayers. You sound like such a strong person. I wish you the best.
 
I really rate my surgeon and I trusted him when he said a fusion was all that could be done I have taken the decision to have my leg amputated another last nearly two yearsv have been hell I can't live with it so it is my decision not his thanks for all kind words I take a lot of strength from them x

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I don't doubt you trust him but was it at the RVI or the Freeman?
Please tell me. Private message me if you prefer.
 
Busylizzie
I too am at wrightington and had my 4th hinge joint put in 4 weeks ago!! I had my first left custom tc3 at 26 as alterative to aka then 2 stage revision 3 years later to custom made rh Endolink which replaces all my femoral head and one inch shaft plus all tibial plateau plus 3 inches of shaft. Two months after that my right knee totally compacted plus all 4 ligaments completely ruptured so went straight for Endolink as it took 8 osteotomies to straighten my left leg and I didn't want a repeat with my right one! I had my right one revised 4 weeks ago due to loosening, tibial fracture plus the hinge was completely broken and dislocated to a custom made SMILES Stanmore! I'm 42 now and my left implant is loosening but talking megaprosthesis for that so I'm trying to leave as long as possible! My implants have been limited to 45° bend to give me as much stability as possible as I have ehlers-danlos syndrome and an autoimmune condition. Wrightington is without THE best and I know without my surgeons there I woukd be in a real bad state. I've also had my right wrist and druj fused in my early 20's but unfortunately with my connective tissues being so rubbish my next joint becomes more unstable and dislocates daily so I'm loathed to fuse a joint if there is a viable alternative which I'm looking for to avoid an ankle fusion. How much does your joint bend? Take care and thanks in advance :) xx
 
Hi I am sorry to hear you are having so many problems my fused joint has no bend at all I am really struggling with it I am currently trying to find a surgeon who will do an above knee amputation as I feel that is my only option to a better life there are people who live good lives with a fused joint unfortunately that is not myself good luck in your future surgeries x
 
@Safcbabe

I am truly sorry to hear what your surgeon says.

However, no matter how much you trust him, I think it would be a good idea to seek a second (and even a third) opinion before taking such a radical step.
 
I will tag @Josephine to address firefly post #30 regarding multiple revisions and diagnosis.

Sounds like you have had a rough go of it. I agree you need to do what is best for you.


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It is myself who wants amputation this is my opinion for amputation I have tried other things and I just don't want to live with my fused leg thank u for your kind words x
 
I respect your decision. It's your life and I can see how fed up you are with the current situation.

My son had an above-knee amputation about 10 years ago - due to trauma in his case.
He has adjusted well and walks without a stick or any other walking aid. He drives his own car and lives independently. There is hope!
 
I am going to tag @pegleg for you. He is a Canadian who had a fused knee and also began to hate it. He subsequently had a hinged knee put in and seems to be pretty happy with it.

I do understand the desperation you are facing----and, you are correct, an amputation is not the end of the world, by anyone's standards.
 
Hi don't go the road of amputation I had a fusion for 20 years then in 2013 I had a TKR done which was the best decision of my life the knee is great and doing very well most of the time I don't think about it.

They might tell you to have the amputation but go to other ortho docs it worked for me and it can work for you do you have insurance that could cover you in another country?? When I first damaged my knee that's what they told me too.
 
Can you ask you DR to get an appointment to this hospital
Address:
The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust
Oswestry
SY10 7AG

website broken link removed: https://www.rjah.nhs.uk/Contact-Us.aspx
 
I am wanting amputation surgeon against it I hate my leg really affecting me x
 
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