AF for 4 years + an unsuccessful LOA. Is there any hope for me?

[Helpmeplz]

Hey fellow AF sufferers. I'm 24 years old and had a meniscus transplant + OATS 4 years ago, after which I developed AF. My extension was about 0 degrees (no hyperextension), and my flexion was probably around 110 degrees. After my LOA in June I got my flexion back but there was no improvement in my extension. I can hyperextend it by force but there's no passive hyperextension. I still feel this great sort of resistance when I take strides, which prevents me from fully extending my knee. There is also a constant feeling that my knee is filled up with glue or some sort of material, I don't know how else to describe it. Also my patella is visibly lower than the other knee.

Seeing an AF specialist next month thanks to the recommendations here. However I'm terrified of my prognosis.

[DogfacedGirl]

The feeling you have of resistance and the knee being filled up with glue will be familiar to many on this forum. It seems that you do have scar tissue in your knee, but please be aware that surgery can make matters worse, not better. AF is driven by inflammation, and surgery causes a huge surge inflammation and wound healing, which is what AF is - dysregulated wound healing. The inflammation can be controlled in some people with medications, but in many others it can't be.

I only say this so that you're fully aware of the risks involved in having more surgery. This is not always explained to people, unfortunately. It seems that there is more risk from surgery if there is knee pain.

All the best,

Kay

[Helpmeplz]

The feeling you have of resistance and the knee being filled up with glue will be familiar to many on this forum. It seems that you do have scar tissue in your knee, but please be aware that surgery can make matters worse, not better. AF is driven by inflammation, and surgery causes a huge surge inflammation and wound healing, which is what AF is - dysregulated wound healing. The inflammation can be controlled in some people with medications, but in many others it can't be.

I only say this so that you're fully aware of the risks involved in having more surgery. This is not always explained to people, unfortunately. It seems that there is more risk from surgery if there is knee pain.

All the best,

Kay

Thanks for the insight Kay. Unfortunately the MRI didn't detect scarring (only inflammation) and he said another surgery would've be of benefit. He said my ROM looks good and that my patella mobility wasn't good but "not terrible".

Do you think scarring might show up on an mri 6 months from now (a year after the LOA), once it has matured? I understand there is a risk of having another surgery but I can't accept this as an outcome, my knee doesn't feel normal at all.

[DogfacedGirl]

Hi Derek,

Most radiologists will miss scar tissue on an MRI unless there is distortions/displacement of structures caused by it, for example, patella baja, and even then a lot of radiologists miss it. I suspect they aren't taught about AF.

If you decide to have more surgery it will be of paramount importance to keep your inflammation as low as possible for months afterwards. It's especially important to NOT exercise too much after surgery, as this increases inflammation. Gentle passive stretching such as CPM will help, but be careful with that too. Supplementing with omega 3 fatty acids and low dose aspirin will help, if your medical condition allows them.

You can PM me if you would like more info.

Kay

[Dnelso33]

Hi Derek

Following your original surgery, did you use a CPM machine at that time? I recently underwent a meniscus transplant and OATS (+ ACL) and also developed scar tissue/fibrosis. I underwent an arthroscopic LOA yesterday, and am using a CPM now for passive motion. I will let you know how my recovery goes, but perhaps a CPM machine following any subsequent procedures might be an option to try and maintain adequate ROM?

[marcolonia]

Hi, have you made any progress with your problems? Unfortunately, I currently suffer from similar issues (fibrosis in the fat pad) following ACL reconstruction 5 months ago. Unsure how to proceed with one doctor arguing for surgery, while another doctor is advising for conservative treatment with hopes that the fibrosis resolves itself at some point in absence of excessive/painful exercise. Therefore, I am looking for experience from people with similar issues and how they (hopefully) overcame this nasty disease.

Thank you!

Best,
Marco

[The_KNEEguru]

Hi Marco
Thank you for finding your way over to the new venue. Things are still a bit quiet here though.
I have recently improved this content page on AF - https://www.kneeguru.co.uk/KNEEnotes/kn ... rofibrosis - and you may find the sidebar link on Recommendations useful - https://www.kneeguru.co.uk/KNEEnotes/ar ... rofibrosis

The _KNEEguru

[The_KNEEguru]

What is your current range of motion, especially extension?

[The_KNEEguru]

Dr Noyes' course - old but still relevant 'broke' with our recent server move, but it is fixed now - https://www.kneeguru.co.uk/KNEEnotes/ar ... rofibrosis

[marcolonia]

Thank you! Current ROM is around 90 degree, 20 degree extension deficit and 110 flexion. Any idea how to best get my active life back?

Best,
Marco

[The_KNEEguru]

5 months is already quite a long time since surgery to still have a 20 degree extension deficit. I imagine it would be in your interests to see someone very experienced in AF and who would be able to assess you in exploring via MRI to see if there is a possible cyclops lesion rather than assuming that AF is the issue?
- https://www.kneeguru.co.uk/KNEEnotes/ar ... nstruction
- https://www.ncbi.nlm.nih.gov/pmc/articl ... 0is%20rare.

In what country/state are you?

[Tangodancer]

Thank you! Current ROM is around 90 degree, 20 degree extension deficit and 110 flexion. Any idea how to best get my active life back?

Best,
Marco

Do you have any updates? Curious what you decided to do.

[marcolonia]

Still figuring out my next steps, unfortunately my ROM has not improved at all despite dedicated AF specific physio. Saw several so called experts on AF but each one had a different opinion on what needs to be done which obviously does not help to get confidence in the next step to take. But likely heading into LOA & MUA beginning of next year as I don’t know what else to do and already living like this for 10 months now, so hoping surgery will get me relief.

How is your situation?

[Tangodancer]

I am 5 months passed stem cell injection after which I developed fibrosis. I am going to try Physio with cristiano first to see what happens. Terrified of Mua and loa...

[Tangodancer]

Hi Derek

Following your original surgery, did you use a CPM machine at that time? I recently underwent a meniscus transplant and OATS (+ ACL) and also developed scar tissue/fibrosis. I underwent an arthroscopic LOA yesterday, and am using a CPM now for passive motion. I will let you know how my recovery goes, but perhaps a CPM machine following any subsequent procedures might be an option to try and maintain adequate ROM?

Curious for your updates also Dnelso33