Introduction & Intellxx DNA Report

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  • #360
    Audrey Wilkes
    Participant

    Hi all! My name is Audrey Wilkes, I was diagnosed with arthrofibrosis about 2 years ago. I had ACL surgery back in 2017, which I never fully recovered from, having persistent stiffness and lacking several degrees of extension and flexion. In 2018, I had my first arthroscopic debridement, which I also did not fully recover from. Finally after an MRI showed I had a cyclops lesion, in January 2021, I had my last arthroscopic debridement with a surgeon at Duke University, who used anakinra injections for 3 weeks following the surgery to prevent the formation of scar tissue growth. According to my recent MRI, it looks like anakinra did help with inhibiting some tissue growth. However, I am still struggling with significant swelling and reduce ROM, especially with flexion, which the surgeon is not attentive to.

    I also wanted to mention that my GP provided me with an Intellxx DNA report, which could help to examine possible influences of my arthrofibrosis condition through next generation DNA sequencing. Specifically, it looks at gene variants that I have, some of which are likely related to my arthrofibrosis condition. I have several gene variants that predispose me to higher levels of inflammation, such as a variant in the “Tumor Necrosis Factor” pathway, two variants in Interleukin 8 (IL8), one in IL37, IL33, “Tumor Necrosis Factor Alpha” pathway, and two in the IL17A pathway. I also have a variant in the “Mannose Binding Lectin 2” (MBL2) pathway, which is related to an abnormal immune response where my body may attack its own tissue. This is also related to OCD, which I have not been diagnosed. My GP is working with experts to figure out the best course of action at this point.

    #361
    Kayley Usher
    Keymaster

    Hi Audrey,
    Thank you for your introduction and sharing your results!
    It’s helpful to know your history, and I think that finding out the underlying causes via testing for genetic variations will be the way of the future for treating AF according to each individual’s drivers. Intellxx DNA seem to provide an excellent service, and I understand that people in Australia and the US can access their services now, with more countries to follow soon.
    All the best,
    Kayley

    #427
    Masoud
    Participant

    Hi Audrey

    Thanks for sharing your story.

    Will you get the proper treatment after these reaults?
    Where I live, the most of OS don’t know anything about AF.

    How much was your flextion before and after the surgery?
    I know that after 3-4 month post-surgery should your knee be much better

    Regards
    Masoud

    #429
    Audrey Wilkes
    Participant

    Hi Masoud, I am actually not sure about if I will get proper treatment. My GP has ordered blood tests, which I plan to get done this week, I have made an appointment with a rheumatologist and sent them Dr. Usher’s great research paper on arthrofibrosis, since most are not familiar. It depends on the blood test results and what the rheumatologist is willing to do. My previous OS also did not know how to handle arthrofibrosis. My current OS says she knows more, but still is not super informed. I do believe that the anakinra injections post-op did help prevent some scar tissue growth.

    Before the surgery, my ROM ranged from 0 to +3, and flexion around 140, now extension is -3 to 0 and flexion is around 130 to 143, but it really depends on my stiffness. It takes me a long time to get to 143 flexion. Unfortunately, as is common with arthrofibrosis, my knee has gotten more stiff after a few months post-op.

    What is your situation like?

    Audrey

    #430
    Masoud
    Participant

    Hi audrey

    140 grade is very good but still not as well as pre- surgery. You should be aware of that the scars will get formed after 3 or 4 months. After that only another surgery can help. But each surgery can also make it worst.
    I wish you could get anakinra injectons before the surgery so that your body couldn’t react with a high inflammation respond. An AF-experienced OS would start with proper medication even before the surgery.
    Be carefull that loading is the worst thing you can do after the surgery. The best thing is moving und moving with your CPM or stationary bike with minimal or no resistence.
    Im 2 years post-OP and had 3 surgeries without proper treatment after each. I live in switzerland and most of OS have no clue about it. They even can not recognise in MRI-pics. Only when they open the knee they realize it. They burn the scars imidiately and the outcomes are poor or even catastrophic like mine. I have 130 flexion but being in the pain became part of life. Im only 37 and have been simce 2016 struggeling. It makes me sometimes so sad, because I was before an athlethe but now I live like a grandpa:-)
    In the world there are about 3-4 OS who know how to handle it…Im looking for one.
    Best regards

    #431
    Audrey Wilkes
    Participant

    Masoud, I am so sorry. It also makes me very sad and hopeless. I think this website will be helpful to all of us! There is also an arthrofibrosis facebook group that I’ve found helpful, called “Arthrofibrosis Support”. I use my husband’s account. There are over 300 people in there who are also struggling.

    #432
    Maria Raynolds
    Participant

    My name is Maria and I live in Canada. I had a total knee replacement in February 2020 and experienced a lot of pain and little improvement of my flexing and stretching soon after. On the recommendation of my OS I went through 7 months of painful physiotherapy with people who did not know about AF. Each time I exercised, my knee would swell up again and heat up again. In all that time my flexing never improved from the 3 months level of 112 degrees and stretching a minus 14%. Upon scouring the internet I found Dr. Usher’s research paper and also did some research in German and found Dr. Philip Traut’s, (a German orthopedic surgeon) new research model. He described exactly how my knee felt: like a painful vice-grip around my knee (Schraubstock Knie). It is interesting, that half way around the world two scientists have independently come up with very similar research: healing AF is not a mechanical problem, but a bio-chemical, a neurological and even a psycho-somatic problem. On their advice I stopped all painful exercises and only used my stationary bike and Qigong exercises. Still my pain did not go away but was more manageable. I recently visited a Podiatrist who recommended a heel lift since my right knee is not properly stretching and I was beginning to get pain into my hips and pelvis from walking crookedly. He manipulated some pressure points in my knee and diagnosed that I had some nerve damage, mostly of the peroneal nerve, either from the operation or from the AF pressure. He prescribe Lyrica for me, a nerve calm ing medication. It has really helped me. I am looking forward to updates on further research into Arthrofibrosis and general Fibrosis research. This will be a very helpful site!

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