Be part of a knee pain study

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I received the below email from some knee recovery researchers who came across The biggest mistakes ACL patients make. The comments of that post has become a bit of a safe place for people to detail their ACL experience. Many read the post and previous comments and have a “Oh my god, yes! I’m not only one!” moment.

If you read the comments, an obvious element of ACL recovery, and really, most knee surgeries, is how much of a quiet struggle there is. By quiet, we mean the patient is in many ways going through hell, yet the orthopedist, and to a lesser extent the physio, have little idea how much struggle is actually going on. This is largely because the orthopedist sees the patient maybe five times after surgery. The physio, if you’re lucky, will see you a few times per week, for a few months. So the physio has more of an idea than the surgeon, but it’s just one of those things where if you’re not in it day in, day out, in some ways you have no clue.

Any parent can relate to this. Parents, I’m one of them, will giggle whenever a potential new parent says “I mean, I’ve babysat before. I think I have a good idea what to expect.” And by giggle, we mean we nearly acquire a hernia from our HAHAHA!!!

Recovering from knee surgery is often not a one time “this sucks” moment. It’s more of a “ughhhh, today was hard, and so were fifty out of the last seventy days.” While there are certainly big dips in how one feels, it’s more of a prolonged mental beatdown.

A parent wonders

“When will the every two hours feedings stop?”

Then they do, and you feel great…but then it’s

“When will the teething stop?”

Then it does, and you think you’ve got it all figured out…but then it’s

“Will they ever not try to crawl out the window?? WHY DON’T THEY UNDERSTAND GRAVITY!?!?!”

All the above is routinely interspersed with,

“Screw it. I’m not capable of this. Where’s the nearest fire station?”

The same happens during knee recovery.

“When will I not feel drugged?”

“I feel like I can actually see again, but man, walking is super tough. I’m kind of scared to do it.”

“I’m walking, but when will my range of motion be back? I hate the fact I can’t bend down to pick something up, and my back is starting to ache.”

“I’m fine doing regular activities, but is it even possible for me to run again?”

Every time a sense of calm arrives, the next storm of anxiety blows in.

“Screw it. I’ll never be the same again. Where are the donuts? Since I can’t run, at least now I have an excuse to get fat.”

A physio is like a babysitting uncle. They see the kid (patient) often when they’re trying to put on their best smile. The kid is in a different environment, where if nothing else it’s kind of nice to break up the monotony of being at home and be distracted for a while. The uncle has the utmost patience because they know at 8pm they won’t be seeing you for at least a few days i.e. they get a break from you. Hell, the uncle is at best making some money off this whole gig. At worst, they get some free beer. Kid wants some candy? Have the bag! Uncle only slept six hours from the sleepover? Who cares! They’ll sleep ten tomorrow.

Meanwhile the parent, the family member taking care of the patient, or the patient themselves, is the one dealing with not being able to go up and down stairs. Every day. Multiple times per day. Needing to be bathed, needing to have their shoes put on, needing someone to cook and drive for them. Crutches you want to throw in the highway. Hasn’t had a good night of sleep in months. You want to skip exercises (eat some candy)? Alright, but now everybody is going to be more miserable because you didn’t take care of yourself. And tomorrow? You all get to do it all over again! Yay!

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So when these researchers reached out to me stating they want to better understand the self-management aspect of knee recovery, I was happy to help. Because it might be the most under appreciated element, and it’s one of the traits this site is most known for.

Here is what they wrote me,

We are researchers from Cardiff University, one physio and the other one computer scientist. We have been collaborating for years on supporting the self-management aspect of the knee recovery. The latest project we have is on automatically processing patients experience described in a written form. Our system is almost ready and we would like to test it on real data, which would require getting persons affected by knee conditions to answer 10 simple questions. We obtained an ethical approval to approach such individuals on the web (please note that everything will be anonymous).

Here is the meat of what they wanted to post:

“We would like to invite you to take part in a research study about your
experience in recovering from a knee condition. More information about the study can be found here:

–Using qualitative analysis of patient blogs to inform development of automated measurement of self-care with text mining and sentiment analysis

We would like to ask you 10 questions in relation to your treatment, symptoms and the ways in which they affect your life. The questionnaire is available here. We thank you in advance for your help.”

Help ’em out if you can! It may help the next generation of knee recoveries.