Immobile fat pad and unable to walk. What do I do next?

[DogfacedGirl]

Hi Amy,

I PM'd you a couple of days ago, I hope it came through.

Kay

[vickster]

Just a note, you can receive PMs but you can’t respond until you have made at least 20 posts (games area good to bump post count)

[amy]

Hi Kay

Yes I recieved the PM, I've really been struggling the past few days. I will try to PM you back tomorrow.

Amy

[CaliCoast]

Hi Amy, sorry to hear about your situation. It sounds familiar and horrible at the same time.

I've had a little progress since I originally posted but nothing spectacular. I focused on not using my knee (relying on crutches) and daily passive extension stretching. I've progressed slowly but had a few days this month where I was able to fully extend my knee walking across my living room. These seemingly random episodes appear for an hour and then fade away like I never experienced it. I attribute this small progress to simple non-use for long periods (3+ months crutches).

I'm visiting AF specialists across the US and hearing opinions on my surgery options, but nothing sounds promising. I'm fairly convinced that I, and people with my condition, have some type of disorder that causes chronic joint and connective tissue sensitivity//swelling. (I have similar joint hypersensitivity in my hands, wrists, and hips.) I'm experimenting w/ radical diet changes, pro-longed fasting, and lifestyle changes to address first since any surgery seems like it would just be throwing gasoline on embers.

If you're completely resting your leg, then your story makes me wonder if something else, beyond the initial surgery trauma, continues to fuel your chronic fat pad swelling? I'm trying to find and interview individuals who have had specific profile like mine: pre-op history of anterior knee discomfort, meniscectomy and//or fat pad trim followed by loss of walking and standing. Have you met many others? Paths to AF and Hoffa's seem to be incredibly unique.

[DogfacedGirl]

Hi CaliCoast,
Thanks for the update, it's great that you've seen some progress! All the very best with that, your lifestyle changes are impressive.

There is good quality research that indicates exposure to near infra-red radiation is very important to good health and immune system function. See this paper called Melatonin and the optics of the body 2019 by Zimmerman et al. http://www.melatonin-research.net/index.php/MR/article/view/19/213

Its a long paper but very interesting. The human body is made to be out in the sunlight all day, but now that doesn't happen. Only recently it has been found that near infra-red radiation is essential for making melatonin inside cells during the day. The melatonin is a powerful anti-oxidant that prevents the cell damage caused by normal metabolism, so it is powerfully anti-inflammatory. Unfortunately, oral supplements don't do the same job.

There are near infra-red radiation lamps available, but finding one that actually produces what it says it does, rather than the visible red light is not so easy. One paper suggested that red light could be detrimental and could cause problems for people with scar tissue problems. There is one company in Australia that makes NIR lamps that have the option of also switching on red light or off, and they say the right things, but I can't vouch for them. They are expensive. See https://www.therapylights.com.au/product/at-home-led-light-therapy/

Exposure to sunlight is the best way to get NIR, and it can penetrate light clothing and sunblock, so you can be sun-safe.

Kay

[CaliCoast]

Hi Kay, I've been seeing a lot of arthrofibrosis specialists, and most of them are saying that I DON'T have signs of arthrofibrosis.  My MRI shows minimal scarring, my patella is mobile, and although I can only reach -20 extension while attempting to stand, I can hit 0 (with discomfort) while laying down. (The doctor says this shouldn't be possible if I had AF since scar tissue is a "hard block", even passively.)

This is super confusing for me since my daily symptoms match AF. I could stand at full extension pre-surgery, weight-bearing exercises create irritation and reduce ROM, I have a finite # of steps I can attempt a day, my knee gets hot, I have to ice and lay off it for days to regain ROM, etc.

Should I be rethinking my condition here, calibrating how I'm approaching this, or am I getting turned around by semantics?

[DogfacedGirl]

Hi CaliCoast,

There is a lot of confusion out there around passive and active ROM, and a lot of AF specialists don't even measure active ROM. However, what actually matters is only active ROM - how far the joint will move under gravity or with another force acting on it (somebody pushing it) is of little relevance. There is always some resistance before the "hard block" is reached, and this is enough to prevent active ROM.

So yes, you do have arthrofibrosis, with severely limited active ROM as well as obvious inflammation after activity. I would suggest that the AF specialists that you've been seeing only call themselves that because they charge money for people to consult with them. It seems to me that they're not open to learning, and that's what a real expert does.

If I recall correctly you have scarring of the Hoffa's Fat Pad, and that will certainly cause the symptoms you describe. Scarring may appear to be minimal on MRI but this is a reflection of the limitations of the imaging and of interpretation of images, and in no way reflects how much impact this will have on your life.

Do you feel that you're still making a little progress?

Kay

[CaliCoast]

Thanks, Kay for your input. The AF specialists are the same ones people have referenced on this forum with success stories. I won't name names but they're the most reputable in the country according to my research. Yet, your understanding of my situation is much more congruent w/ my daily experience than what I'm hearing from them. It's just so frustrating that even the experts--who have seen hundreds of patients with AF--have such an inflexible and outdated mental model. I don't get the disconnect.

And yes, I do have slight post-op scarring in my fat pad. The doctors believe it's negligible but perhaps the MRI just isn't seeing the full story.

I'm still progressing but at a glacial pace. I've started routinely having episodes of full active extension every day. I'm able to walk for 5-10 m but then irritation kicks in and my knee is worse the next day. I lay off it for ~3 days and then can't help but retry walking. It's an exhausting cycle of elation and despair. It took me 15 months to get to 5 mins of walking so can only assume it will be years to regain quality of life, if at all possible. 

Thank you, Kay!

[DogfacedGirl]

Hi CaliCoast,
I shouldn't be too hard on the specialists, there is no training for AF and almost no properly conducted research, so it's hard for them to learn. But listening to what people experience is a good place to start!

As mentioned, your symptoms are well aligned with Hoffas impingement, and it's a shame that this hasn't been clearly spelled out with appropriate management strategies.

I hope you're able to keep progressing, even small progress is progress.

Kay