Hi Kayley, my knee at this point is completely ankylosed, with literally zero range of motion. I think this surgery is only indicated for very severe cases like mine, as I need a revision of my limb salvage, it was going to be an open surgery anyways. I hate that my arthrofibrosis was left untreated, because it was never my choice, I begged for help. I will send you an email because there are a few papers that I want to share wit you. This procedure at the moment is just a dream for me, very expensive and difficult to organise, and it is not a one surgeon's job, we are looking at a minimum of 5 of them.

Hi Kayley, It is indeed a very invasive procedure, but sadly arthroscopy is not an option for me, and I need an open surgery. I don't think that there will be any trials, since this is not even a modern surgery. The extension lag is not so much of a problem with the Judet technique, but it was with other previous versions of the quadricepsplasty. The main risk is infection.

Thank you so much for this amazing opportunity, I feel ao supported now ❤️❤️

Yes, I will have to explain the mismatch, I don't think anyone would care considering the experiences all these years. I need to get a good journalist to write a story about this.

Hi Kayley, They are denying me a referral to an orthopaedic hospital. My arthrofibrosis hits them where it hurts them the most, their ego. I have all the surgeons in Scotland against me and the excuse of the board is that all of them oppose to my surgery, which I couldn't care less about because they didn't even assess my condition properly. It is good that I have evidence to expose their lies and the gaslighting that went on for many years. I guess I will need to keep fighting. Thanks for all the work that you do l for us ❤️

Hello Kayley, The cultures for infection came back negative. The AF specialist told me that there is a mismatch between the implant and the patella (which should have been resurfaced). He designed a surgical plan but sadly he can't do it because he works by himself, and my op is challenging and a team is necessary. The NHS keeps refusing to help and they deny me a referral to an orthopaedic hospital where I could get some help. I can't believe that they can get away with anything, I really need to have surgery. The specialist told me that I have a mass in the supra patellar pouch the size of half an apple. I'm losing hope.

Hello! Do I have an increased risk because of the tumour that was removed? I couldn't find any literature about limb sparing surgeries and arthrofibrosis fibrosis. I had a massive surgery, that included a full reconstruction of the extensor mechanism with a gastrocnemius flap. I had to be on a straight brace for 6 weeks, and then another one and I was allowed to bend gradually. Never passed 45 degrees. Was never offered a MUA or anything. Of course the post-op chemotherapy didn't favour the healing and my pain was off the charts ( perhaps I had CRPS). Because of my poor response to chemotherapy, I had an immunotherapy drug added to my regime, that was never-ending (48 intravenous infusions) on top of the 17 chemotherapy rounds. During the pre-operative chemotherapy, my port got infected and developed sepsis. An expert suggested that perhaps a low grade chronic prosthetic infection is the cause of my arthrofibrosis. There is a component of my prosthesis that is loose. I found an AF expert and next months will have some tests to rule out infection, and an examination of the knee under anaesthesia, apparently because of the way my knee was done ( the patella is not resurfaced), it is possible that the bone has never been sliding and moving as well as it should (another possible cause of AF). In spite of my complex medical history, I feel positive because I know I won't be having any more chemotherapy, and I truly believe that was very detrimental for my healing. I'm very excited to be so close to have some answers.

Hello everyone. I have been battling AF since 2014, and I didn't even know what I had because no one had the courtesy to tell me. I had a Limb Sparing Surgery (LSS), that includes a TKR to remove a cancerous bone tumour (Osteosarcoma) from my tibia. My leg is locked in extension and no one will ever offer a surgery under the universal healthcare system that we have in the United Kingdom (NHS). When conservative measures failed, my surgeon did absolutely nothing. I found now the only specialist in the United Kingdom, but sadly he only works privately. I can't get insurance because the condition will be considered pré-existent and now I'm unfit for work. Raising the money will be a huge challenge, but I think I deserve a chance. It is frustrating that the NHS can get away with not offering any treatment since there are no NICE guidelines to treat AF. I'm glad that I found this space when I can chat with others going through the same. Best wishes to everyone fighting AF, Florencia