ACLR in 2017followed by another knee scope (same surgeon)with resection of the fat pad a year later, when all of my local healthcare providers were treating me like the problem was in my head and I just needed to work harder (common tragic story, as I understand now). It was after that second knee scope surgery that I developed a very hot, swollen, tight knee. I was missing a few degrees of extension (enough to keep me limping), 5-10 of flexion, but my patellar mobility was significantly lacking.
I have since taken a gamble on another surgery in Dec 2020 by Dr. Hackett at The Steadman Clinic in Vail Colorado, that included an anterior interval release, synovectomy, lysis of adhesions, and ACL revision using donor tissue (Kayley’s note: see details of Dr Hackett’s surgical approach to AF under “Frequently Asked Questions”).
Outcome 20 months later:
I have had a relatively good outcome and while not 100%, I have my active lifestyle back, something I thought was completely over (as well as living without constant physical suffering). This month I swam 1.5 miles across San Francisco Bay in the classic escape from Alcatraz swim, biked 35 miles through hilly wine country in Sonoma, CA, jogged 2 miles on a treadmill, and then went on a backpacking trip. I have full ROM back but still have a little infrapatellar contracture syndrome, and I can’t do what I used to in terms of duration and volume by a long shot, but my tolerance for activity is slowly increasing without added swelling, heat, or pain.
I don’t think my knee will ever feel normal, but I’m okay with that. I wouldn’t call it pain, but I feel it most of the time still when moving. My hope is to return to real running which still feels like a long way off because flat walking is still not always 100% normal feeling. So while I feel like I’m doing really well (I went on another 2 day backpacking trip with friends last week, just 4 days after doing an uphill 10 hour Climbathon race), relative to many sufferers, I still don’t feel like I’m done with rehab, or am back to normal, or have “beat” arthrofibrosis.
I guess it’s all about perspective. It’s still hard comparing where I am now to where I was and what my knees were capable of prior to injury, but I have to let that go and keep focusing on what I can do. Hopefully I will continue to progress.
–CPM 4-6 hours per day, spread out. I definitely noticed I could over do this, as Dr. Hackett’s PA also told me was possible, and would feel things tighten up after a while on it, at which point I’d stop and come back to it later. My ROM wasn’t really a problem pre-op though and I actually was back to 121 degrees by day 3 with a slow increase after that with minimal to no effort working on flexion (I focused on extension and patellar mobility).
–Normatec boots (leg-length pneumatic sequential compression boots). Nobody actually recommended these to me, but I really think they made a huge difference for me, even if only psychologically. I got them with the idea that they’d help with lymphatic drainage, circulation, maybe decrease my risk of DVT, and just feel good. I absolutely LOVE these things and think they were the best purchase of all the rehab “toys” I’ve acquired over the years. I used them multiple times per day early post op, with my legs elevated on a wedge pillow (I think this was key). I literally spent hours in them every day (probably 45 -90 minutes at a time).
I used them daily for months, decreasing in frequency over time to just using them for a session after a lot of activity on my knee. They significantly decreased the amount of knee effusion and soft tissue swelling and increased ROM after coming out of them (or at least the looseness of that movement). They also just feel really good, like a massage. They sequentially squeeze the leg starting at the feet and work proximally and then after several seconds of tight compression, it all releases, and I feel a rush of blood going back into the leg which feels good. I set it to a rest period of 45 seconds before the process starts over again. They’re not cheap (~$900 USD) but if there was one piece of equipment I’d not do this again without, it would be these (or similar product).
The swelling of course comes back at least to some degree with gravity/re-loading…but like icing the transient effects are at least really impressive.
–scraping tool/lymphatic massage. When laying in bed/watching TV and recovering, I’d either use a metal flat-edge ASTYM tool or just my fingers/hands to VERY GENTLY massage my legs in a proximal brushing motion from feet up to groin for lymphatic drainage. I also did a little lymphatic massage to the areas of concentrated lymph nodes like groin and popliteal fossa (superficial circular motions with fingertips). I didn’t really mess with the knee itself or the incisions (other than patellar mobs).
–TENS/EMS. While sitting and playing cards with family I’d set a EMS unit on my quads and set it to contract for about 10 seconds, rest for 30 or so, over and over again. I’d sometimes do it passively (make the muscle dance without voluntarily squeezing too).
–patellar mobs. I’d set a timer and I’d do 2 minutes in each direction (side to side, up and down, patellar tendon side to side and quad tendon side to side) and at different knee flexion angles, three times a day. Given my scarring pattern I was told to focus on superior glide and patellar tendon mobilizations. These were all very monotonous, hence my need for an actual timer to keep me honest! I did them religiously for 6 weeks and then kind of lost my steam. It was better having a partner help with these so my quad could be fully relaxed and not tensed from having to reach over my leg.
–Kinesio edema taping. Applied starting POD1 to promote lymphatic drainage. Tape is applied at minimal (<25%) stretch in thin strips starting proximal to area of swelling and aiming toward the knee. There are some cool images of what this can do to a large colorful bruise if you search google images for “kinesiology edema taping.” I have no idea if it helped but it seemed like a low risk thing to try as an adjunct.
–exercise: starting days after surgery I started working all of my well, non-affected body parts. I did planks, glute bridges, calf raises, hip abduction, etc. I figured the more I get my blood flowing and muscles contracting the better the circulation in/out of the knee I’d have too. Regarding the infamous quad, I focused more on simple activation and not really strengthening it for about 6 weeks post-op though I did hop on a spin bike and did some turns without resistance starting around 2.5 weeks. Later post op I did some isometric leg extensions against a Swiss ball at 90 degrees, quad sets, and standing banded terminal knee extensions (but not immediately post op) and very light leg press. I lost quad strength, but I was told by Dr. Hackett that we’d tolerate that in the first 6 weeks to keep mobility and I’d get the strength back when it was time to work on it.
–crutches: I was ordered partial weight bearing for 10 days, though I extended that out to 5.5 weeks. I had a really hard time weaning off the crutches without increase in swelling/pain/tightness. I probably could have gone longer partial weight bearing on crutches than 5.5 weeks because it was hard to ditch them at 5.5 weeks but they wanted me off of them, so I reluctantly complied. I continued to limp for a long time and also avoided time on my feet for many months because that would exacerbate things. It probably took until 10 months post op for me to fully tolerate normal daily life activities on my feet PLUS rehab. There were a lot of ups and downs… the dance of trying to rehab while trying to keep up with normal life activities too that significantly stress the knee.
Walking and standing were the hardest things for me to build a tolerance for.
–anti-inflammatory diet. I usually eat what I’d consider a balanced, better than average (certainly better than most Americans), whole food but unrestricted diet, but I cut out gluten, dairy, added sugars, alcohol, and processed foods for several months pre-op and for 3 months post-op, just in case I could gain something out of that. Rather than focusing on what I couldn’t eat I really focused on eating a lot of omega-3 fatty acid rich foods and anti-oxidant rich foods / dark colored veggies /cruciferous veggies and berries. I can’t say I noticed any difference overall, but I figured as long as I got enough calories and macronutrients the strategy probably wouldn’t hurt.
–medications: I took Losartan as prescribed by Dr.Hackett for 1 month post-op. I only tolerated 12.5mg once a day. I started with twice a day but it dropped my BP too much and made me light headed. I also took tumeric, omega 3s, and Avmacol for the sulphoraphane when I wasn’t growing my own broccoli sprouts. I took aspirin regularly for a while too.
– exercise/activity post-op I didn’t do anything I’d consider aggressive or forceful, but I did a lot of volume of a lot of activities that I thought would be productive towards maintaining movement, and/or decreasing swelling/inflammation. I went back and forth between CPM, normatecs, exercises, lymphatic massage, patellar mobs. For better or worse, I didn’t sit around much at all doing nothing, but I might lay/sit and do lymphatic massage at the same time, and I’m counting Laying in normatecs as an activity. Whenever I wasn’t on my feet, I generally kept my knee above heart level. Eating/sitting at a table which I didn’t do for long periods, it would just be level with my hip with my foot elevated too.
-Later in rehab: I think the “don’t do anything painful” strategy is a tough thing. When you’re knee hurts all the time, like mine did, and every movement hurts, I feel like doing painful things is inevitable for progress and doing nothing is definitely not the right strategy either. Navigating activity strictly based on subjective pain was super tricky. Finding that balance of doing enough (providing enough load/force) to progress and teach the tissues to lay down in an organized fashion during remodelling vs not doing too much that it inflames the knee more and prevents more subsequent rehab was really hard for me and is hard to articulate in words. If I only did things that didn’t cause pain, I definitely would not be where I am today.
That’s not to say I “pushed through the pain” because I wouldn’t say that either.. I am no martyr and I avoid pain as much as the next person, but I did and still do things that are uncomfortable in the knee, but I try to keep it in a tolerable range and now try to judge the appropriateness of what I did to it not in the moment but by my knee’s response to the increased activity later (typically the next day or days). If I don’t experience any increased swelling, loss of extension, or pain at rest, I consider it a win.
In general, I’m a big fan of and 100% agree with a very slow, progressive loading exercise program..but I think emphasizing progressive load was really important in my personal recovery. Having a dysregulated immune response probably significantly changes all of that, but this was fortunately my experience.
–yoga: I think yoga was so beneficial for me, the physical part, the breathing, the mindfulness. I did a lot of yoga pre-op and post-op, mainly Vinyasa style with some significant modifications for the knee. I aimed for 20 minutes most days. I like Yin too and think there are a lot of benefits to long gentle 3-5 minute hold stretches. On my “rougher than usual” knee days I’d do more of a restorative type yoga. Doing some physical activity every day helped me mentally (both before and after surgery), even if it was just some gentle restorative yoga I’d feel like I “did something” and kept me in the habit of doing something for my health. Vinyasa type yoga I feel also helped with balance, some strength, and flexibility and with evening out the imbalances that started to occur in other parts of my body as a result of one dysfunctional joint. I resumed vinyasa yoga around 10 weeks post-op, cautiously. Even today my knee always feels better after a vinyasa yoga class. It was more of a habit before my last surgery but I think it helped me go into surgery with a calm knee and better overall body mechanics.
Blood Flow Restricted exercises: I found it irritating to my knee post-operatively until about 10-12 weeks post op, then I did some BFR work and fund it helpful. (Kayley’s note: blood flow restriction could activate fibrosis due to the powerful fibrotic effects of hypoxia, so I feel that this might not be a good idea while a risk of arthrofibrosis is present).