Banner - Hide this banner





Author Topic: extensive AF without ROM loss  (Read 249 times)

0 Members and 1 Guest are viewing this topic.

Offline snowunicorn23

  • MICROgeek (<20 posts)
  • *
  • Posts: 4
  • Liked: 0
extensive AF without ROM loss
« on: July 28, 2020, 04:59:58 PM »
Hi everyone,
I'm 20F and just got ACL reconstruction 4 months ago with patella tendon autograft. My initial recovery was quite quick and as the title indicates I basically achieved full ROM after 9 weeks - hyperextension same as my other leg (although it's a bit tight) and after some brief warm-up I can make my heel touch my butt if I kneel (also feels tight and my active flexion is still slightly behind my good leg, but I'm more than satisfied in this respect).
Unfortunately, starting ~1-2 months ago my recovery mostly plateaued, and in the past few weeks has gotten worse - not too painful (~2-3/10?) but it always feels like there's a bunch of stuff stuck in the joint when I walk, and I keep experiencing catching, popping, sometimes locking, etc. My orthopedist ordered an MRI last week and it just came back saying that there's extensive AF throughout the Hoffa's fat pad which tether the patella to the tibia and adhere to the horns of both menisci, in addition to a cyclops lesion adhering to the ACL graft and one of the fat pad AF pieces. I am shocked -- I have no idea how this is possible given I have full ROM.
I'm considering various treatments including surgical intervention as I would hate to have this blockage, catching, popping, etc for the rest of my life (e.g. I don't think I'll be able to run or do sports like this - but that is why I got ACLR in the first place), so I am trying to do research on the possible solutions. Unfortunately, almost all resources I can find begin with classification of AF based on degree of ROM loss (by which I would not even be classified as having AF, lol), and I can't find any info on AF patients who have full ROM. Has anyone here had a similar experience as mine?? I'd really appreciate hearing any stories.
Thanks!!
Iris

PS: Regarding surgery, I'm particularly terrified of my AF recurring with worse symptoms after another operation -- I would hate to lose the full ROM that I have. Any comments/suggestions?

Offline DogfacedGirl

  • Regular Poster
  • ***
  • Posts: 125
  • Liked: 17
Re: extensive AF without ROM loss
« Reply #1 on: July 29, 2020, 02:45:32 PM »
Hi Snowunicorn,

I'm sorry about your AF. There is a reference to a woman with AF but no loss of ROM in this freely available paper on the pathology of AF
https://www.nature.com/articles/s41413-019-0047-x

Unfortunately, there is no good answer about the question of surgery, or not. If it was me, I would wait for up to a year before trying surgery again. It seems to be important not to have surgery while there is still active inflammation, because the the surgery itself will add to the inflammatory burden that is already out of control and causing fibrosis.

It is important to try and settle the inflammation as much as possible in these relatively early days post-op - this is the crucial time. If you can settle the inflammation, the scar tissue can break down by itself over time. That means limiting any exercise that causes pain, including squats. Because your Hoffas has scarring, it is likely to catch and be pinched between the bones of the joint when you bend the leg under strain eg walking down stairs, doing squats. If you keep pinching it, the Hoffas will become increasingly worse, and at some point the damage won't be reversible. You'll be able to feel the pinching when it occurs. Never try to push through the pain, that is a path many on this forum have tried, and have bitterly regretted!

Other points are: don't take NSAIDS anti-inflammatories (Ibuprofen, Nurofen etc) for longer than a few days, long term use will actually prevent the resolution of the inflammation. And do take fish oil tablets, and low dose aspirin if your medical situation permits.

All the best,

Kay
1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline snowunicorn23

  • MICROgeek (<20 posts)
  • *
  • Posts: 4
  • Liked: 0
Re: extensive AF without ROM loss
« Reply #2 on: July 29, 2020, 05:08:26 PM »
Hi Kay,

Thanks so much for the info and for your suggestions!! I have another appointment with my orthopedist soon to discuss the options/next steps and will definitely keep these in mind!

Best,
Iris

Offline DogfacedGirl

  • Regular Poster
  • ***
  • Posts: 125
  • Liked: 17
Re: extensive AF without ROM loss
« Reply #3 on: July 30, 2020, 01:32:18 AM »
Hi Iris,

It would be good to see a rheumatologist asap and be put onto a good anti-inflammatory that isn't an NSAID (let me know if you want clarification). There are a number of meds out there that might help, but you might have to educate the rheumatologist about AF, most haven't heard about it.

All the best,

Kay
1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline snowunicorn23

  • MICROgeek (<20 posts)
  • *
  • Posts: 4
  • Liked: 0
Re: extensive AF without ROM loss
« Reply #4 on: July 30, 2020, 05:24:34 AM »
Hi Kay,
Thanks for the suggestion! Would you happen to know some examples of these anti-inflammatories that one may get here?
Best,
Iris

Offline DogfacedGirl

  • Regular Poster
  • ***
  • Posts: 125
  • Liked: 17
Re: extensive AF without ROM loss
« Reply #5 on: July 31, 2020, 05:18:21 AM »
Hi Iris,

Probably the anti-inflammatory with the most promise for treating AF is Anakinra. In the context of AF it's given as an injection into the joint, and usually multiple injections are necessary, spaced at intervals. Your OS would do this, but he/she may want it prescribed by a rheumatologist. It's a biologic, an antagonist against one of the important inflammatory cytokines that promotes AF, called IL-1.

There is another biologic, or group of biologics, called TNF-a antibodies. These have less evidence for their use in AF, but the theory supports that it would help, the same as anakinra. These are given as a systemic injection, either once a fortnight or once a month. Examples are Humira and Simponi. This is likely to be more expensive and possibly more difficult to access.

Injected corticosteroids can help, but need to be used carefully as they are associated with degradation of cartilage, particularity if used repeatedly. Biologics have the benefit of not having any side-effects unless a person happens to be allergic to something in them (very rare), but an aspect of the immune system is suppressed, so there is a greater risk of infection.

Metformin could be helpful, it's a widely used diabetes drug, and actually increases the lifespan of diabetics taking it compared to healthy controls who aren't. The anti-inflammatory effects are modest, but it also has anti-fibrosis effects - it reduces TGF-B1, and it's considered to be very safe.

Then there are other oral drugs such as Losartan, Hydroxychloroquine, Dexamethasone and a number of others that suppress the immune system. Some people with AF say these have helped, but how people respond seems to be variable.

This link is an interesting read, it's by a doctor who got AF, but recovered
https://www.washingtonpost.com/national/health-science/a-doctor-with-a-bad-knee-runs-into-one-size-fits-all-medicine/2016/12/02/d5ba55c0-a6a2-11e6-ba59-a7d93165c6d4_story.html?noredirect=on

All the best,

Kay

1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline snowunicorn23

  • MICROgeek (<20 posts)
  • *
  • Posts: 4
  • Liked: 0
Re: extensive AF without ROM loss
« Reply #6 on: July 31, 2020, 10:43:22 PM »
I see, thanks so much for this info!

Best,
Iris