How to Survive Surgery Recovery Drudgery: Part I

An Imperfect Post Surgery Playbook

Disclaimer: No content in this post is intended as medical advice. If you are experiencing an injury that relates to the topics discussed, please consult with your health professional(s).

Content Warning: descriptions of injuries and surgical procedures. Skip to Tip #2 to avoid.

A little over two weeks ago, I had major knee surgery. I am currently laid up on my couch, fighting my cat for space on my lap for my computer, trying not to think of what my knee looks like under the bandages. Here I will share my strategies and tips, both serious and not, to make a terrible surgery recovery more bearable.

Pre-Surgery Preparations

There is a lot you can do leading up to surgery to set yourself up for a successful, minimally terrible recovery. I will publish post-op recommendations in the next post.

Tip #1: Understand the medical requirements for your post-op recovery

It’s essential to understand the details of what your surgery and recovery will entail. Ask your surgeon to describe both, and ask follow up questions on what you don’t understand. If you get home and think of more questions later, send them a message through their patient portal, or call their office.

After two failed lateral releases over the last two decades, I had a tibial tubercle osteotomy with medial reefing to finally resolve patellar instability on my left knee. In plain terms, they tightened up the ligaments on the inner side of my knee, and then they cut out a piece of my tibia, moved it over, shortened my patellar tendon, and re-attached everything in its new place with two giant screws. They took my bone and moved it! It’s wild that this is the standard treatment now for knees like mine.

In the first phase of recovery, my leg is in a full-length brace. For the first two weeks it was locked completely straight. Over the course of 6 weeks, at two week intervals it gets unlocked a bit more at a time until I can bend 120 degrees. During this entire period though I am only allowed toe touch weight bearing. After 8 weeks I will graduate to a smaller brace and be allowed to weight bear to walk without crutches.

Because of my hypermobility, I already have several injuries and chronic pain in my wrists, elbows, and shoulders, and am very prone to new ones. This makes moving around on crutches both painful and dangerous. This is my fourth knee surgery in my lifetime, and this is the most difficult recovery I’ve had. Two months with no weight bearing allowed in a full-leg brace was extremely daunting. Crutching for that long would certainly break my body more. A knee scooter isn’t an option because of the nature of the surgery and the straight leg brace.

After straight up panicking for a while, ruminating about it, I starting asking my different health care team members for guidance.

Tip #2: Discuss the surgery and recovery with your care team

I discussed the surgery first with my therapist. Trying to figure how to plan a date for the surgery where I could take this much time for recovery, knowing the burden on my husband would be significant, was sending me into anxiety spirals. My therapist knows that when I am anxious, it is helpful for me to develop practical plans to address my rational fears, and logically de-escalate the irrational ones.

She suggested a few things which I found helpful:

Call your insurance and ask about a home safety assessment and availability of coverage for in-home care if needed. Also ask about coverage for items you will need to purchase such as mobility devices, shower safety devices, etc. You may be able to get them covered by insurance, but you can also likely pay for them with an HSA or FSA if not.

If you have physical therapists, personal trainers, or other healthcare workers treating you for this injury or others, discuss the surgery and recovery to get their perspectives. I talked to the physical therapist treating my tennis elbow and wrist TFCC. She gave me some exercises I could still do while seated to help maintain and strengthen my arm and shoulder. She also had me try standard crutches, and it was immediately clear that my wrist wouldn’t tolerate them. The good news is there are several different types of crutches. While I can’t tolerate underarm crutches, she recommended forearm-support crutches like these.

Talk to your specialists for your various health conditions to see if there are any possible complications or other considerations to take into account. My Pilates trainer, who is a hypermobility PT expert, expressed skepticism that I really needed the surgery. She had seen a lot of hypermobile patients sent to surgeries they didn’t really need because their PTs didn’t know how to treat hypermobile bodies. She thought I could improve significantly if I worked with her for a few months.

However, the knee surgeon had presented a very compelling case to me that I would definitely need this surgery based on my bone structure and failed lateral releases. It’s important to have some healthy skepticism of conclusions and advice from your healthcare providers. This can be difficult when you are not an expert (even medical professionals aren’t experts in all areas), but when something someone is telling you doesn’t feel right, I suggest getting another opinion from an expert.

It’s important to have some healthy skepticism of conclusions and advice from your healthcare providers.

I went to my hypermobility doctor, Dr. A, to ask for her opinion. Dr. A pulled up my MRI and X-rays and said immediately that I had a “surgical knee”– meaning yes, go for the surgery. It was comforting and assuring to have Dr. A support my decision.

I also asked her for advice on mobility aids during recovery. She advised that I was correct in thinking too much crutching was likely to result in injury which would ultimately delay my overall recovery. For hypermobile bodies, she suggests having a variety of mobility devices to use and switch between to (1) allow flexibility for what’s needed in different situations and spaces and (2) use different muscle groups for different devices which will vary and even out the strain on your joints. She seconded the recommendation of my PT for the forearm crutches, and also recommended a wheelchair and walker.

Tip #3: Marry a nurse

Or other healthcare professional like a physical therapist. My husband is an RN working now in case management, but he worked in critical care for many years in a large city. While he generally does his best not to treat me like a patient¹, I am supremely grateful for his expertise, care, advice, and support.

Since he worked in an ICU for most of his career, there can sometimes be issues with a lack of sympathy. An ICU nurse in a level 1 trauma facility essentially spends their shifts as a plate spinner and juggler does, running around constantly to care for whatever is immediately about to break. Whoever is about to die gets the urgent attention and everyone else can hold on for a bit. So if my vitals aren’t tanking, and I don’t need to be intubated, I’m fine right?

But my husband is still an expert in patient care. He is trained to help me get around safely while keeping himself safe. He taught me how to use the wheelchair safely, adjusted my forearm crutches to the correct height, and purchased a gait belt to help move me when needed. He knows what to look out for in my wound care and knows how to properly wrap a bandage to avoid or minimize pressure sores.

When I have a weird pain or numbness, he can quickly assess whether it’s likely something of concern. Without him I would be ruminating and building up anxiety every time my toes tingled from my leg being elevated a bit too high, wondering whether it was worth waiting on hold for the doctor’s office, afraid there was some nerve damage during surgery. Without him I would likely be doing a lot of unsafe practices, pushing myself too hard to soon, putting myself at high risk for a fall.

This suggestion is obviously facetious. Marry whomever you want (or no one at all). But I am very grateful for the care of my husband, and I do recommend falling for a healthcare professional if at all possible.

Tip #4: Prepare your home

On a more serious note, now that you have talked to your insurance and healthcare providers, it’s time to start preparing what they’ve recommended. Here’s several of the items I did and some I wish I’d done, as well as a link to a more detailed article with many of these recommendations.

• Buy the mobility aids your doctors have recommended.
• Stock up on ice packs and cryo-cuffs as needed for your procedure.
• Identify where you will spend time, sleep, and bathe in your home and prepare those spaces.
  • Add safety-bars, non-slips mats, and shower chairs to your bathroom as needed.
  • Swap out your shower head for a flexible head.
  • Buy pillows to elevate your body parts or support them during recovery as needed. There are specialized pillows for knees, elbows, shoulders, etc.
  • Check the width of doorways for wheelchair clearance. You can remove doors from the hinges to help improve access, and you can also use a combination of wheelchair + walker or crutches to navigate smaller spaces.
  • Remove or secure area rugs and other obstacles/trip hazards.
• Buy comfort items, like snacks and packaged water to have readily available. Set up a swivel or rolling table to use while in your recovery cocoon. Buy packaged frozen or fresh foods that will be easy to prepare and eat. Grab some shower wipes and shampoo caps for care between bathing. I wrote a separate post with recommendations specifically for the best products to feel clean when you can’t shower.

Some items I have found particularly helpful:

Tip #5: Get some cats

Or a dog. Or both! Cats are indisputably, objectively, scientifically, the best recovery companions.² Did you know that a cat purring on your lap is literally healing your body? And that petting a cat reduces the amount of cortisol (a stress hormone) in your body?

My cats have always been a great source of joy and comfort, but I especially appreciate them when ill or injured. They keep me entertained, antagonizing the hummingbirds outside the window, playing fetch with this disk thrower that they absolutely love, and generally just being goofballs. They also curl up on my lap or under the blanket with me, snuggling and purring and keeping me company.

All cats have their own unique personalities, but all five cats I have owned have been very affectionate. As long as you have someone else to help you care for them, go get yourself a kitty to love and be loved.

Dogs are good too, just more work.

Tip #6: Reach out for support

I cannot stress this one enough– Talk to your family and friends about what support you will need. Ask for help. Can different friends take different days/nights to come over for a few hours to help take care of you? Can someone make freezer-friendly meals or bring by fresh food? Can someone help take care of your pets or children?

I know it can be uncomfortable to ask for help. Our society places a lot of emphasis on “independence,” making us feel like failures when we need help. But here’s a secret– no humans are completely independent. We need each other.

It’s taken me years of work to be more willing to ask for help, but I do still struggle with feeling like a burden. When I feel like this, I stop and ask myself this question– do I feel like my loved ones are a burden when they need my help? Of course not.

You are not a burden. You deserve love and support and healing.

You can also engage with online communities for support. For hypermobility/EDS, you can find a local support group here. You can also engage with different condition/disability forums on Reddit, or Google to find the right support group for you. These forums can be great to get general emotional support as well as practical advice for any number of challenges you may be facing.

Do you have other suggestions? Please comment below, send me a note @hEDSPhysicist, or contact me via this site.

Barring unforeseen circumstances with my own recovery, I will post Post-Op recommendations next week.

You are not a burden. You deserve love and support and healing.

Footnotes

1. Can you imagine how exhausting it would be to constantly view your spouse as a patient? Caregiver fatigue is a difficult issue.
2. Trust me, I am a doctor. And by a doctor, I mean I have a PhD in Physics. A perk of being a physicist is that anything you say is true automatically becomes an irrefutable law of the universe.^a

Footnotes of Footnotes

a. According to cis white men in the r/physics forum on Reddit.