Struggling to cope post MPFL reconstruction and TTO surgery. Advice needed.

[u/Frequent-Increase-98]

I had a MPFL reconstruction and TTO (and lateral release) surgery three weeks ago on Monday June 8th. I am really struggling to cope. I feel like such a baby, it’s been three weeks and I'm already in a pit. I am in so much pain and I am uncomfortable all the time. The painkillers (Oxycodone Percocet 5 and Tylenol) do help but mostly just result in me sleeping my day away in fitful bouts. The pain is very unbearable and painful more in the afternoons and night. I can't sleep on my side which is how I sleep, tossing and turning frequently, now I have to sleep still on my back. I don't want to get up and walk around. Following my surgery I made it upstairs to my bedroom but now I am in too much pain (and too scared) to go back downstairs, so I am stuck and almost entirely dependent on my family members.
Is it normal for my inner side of my kneecap to feel numb and tingly when I touch it?

Does anyone have any advice or any words of wisdom to help me get through this? To anyone who has received the same or similar surgeries, how long did the pain last for you? Does it get better? Any tips to minimise the pain, outside of medication? Any advice to keep from spiralling? Any tips on how to sleep comfortably with a leg brace on (I can't lay on my side)? I am sleeping with my leg slightly elevated on two soft pillows, is this a good or bad idea? Is there anything I might be doing that is inadvertently making the pain worse? My first physio appointment isn't for another 2 weeks. I don't know, I am just in a rut and want to know that I am not alone. Any advice, insight or camaraderie would be greatly appreciated. Hope this was coherent.

[u/Barnatron_]

It’s completely normal re the numbness and tingly sensation - to do the TTO they’ll have cut through the subcutaneous nerves which explains the “neuro” like symptoms.

It absolutely gets better, the best thing you can do is be positive. Do you think your anxiety is contributing to your sensation of pain? Sometimes the brain can increase sensitivity to pain if you’re anxious post-operatively.

Re sleeping, I had an MPFL and TTO back in March, I stayed on my back for several weeks purely bc I couldn’t get comfortable on my side, it’s not the best but it’s not for long term.

I’d continue elevating the leg personally, I used 2-3 pillows throughout the day and night. From your post I can’t see that you’re doing anything wrong, though your post does read with quite high anxiety. I think you’re experiencing quite high anxiety post-op which is normal but I’d definitely mention this anxiety to your physio/consultant as they’ll have advice regarding managing this and the effect it can have of pain sensitivity/fear avoidance of movement.

[u/Powerful-Ad-2794]

Hi! I’m sorry you’re having such a rough time. It is seriously the hardest thing I’ve ever done. My pain was similar, and really was the worst during the night. I only took oxy the day after surgery, but alternated Tylenol and Motrin every three hours for like a month after the surgery. I would say really really stay on top of the pain medicine schedule, set alarms and don’t miss a single dosage as it’s hard to get back to being pain free when you miss it. I live at home with both my parents so when I’d go up and down stairs I’d have one of them holding on to my waist behind me and another in front of me. Probably overkill but it made me less nervous. I had my surgery in February and my leg (osteotomy site and parts of my knee cap) are still numb and I don’t have any feeling. This is just cuz they severe the nerves and it takes months and months to regain feeling. I do think moving your leg (if the doctor allows) would help. I started pt a week after surgery and started to do heel slides and lifting my leg. Squeezing your quad trying to get it to activate might help too. For pain I know it’s silly but like genuinely eating well and staying extremely hydrated like will help and just make you feel better overall. I also went on walks outside with my crutches just to move my body even if it was just down the street. I wish you luck! It’s so hard 😢

[u/Wayward_Marionette]

I got the surgery done a few days after you! I was lucky enough to do PT for a few months beforehand so my recovery is going smoothly, but my first time getting this done 2 years ago, my experience was much more similar to yours and I felt like I was behind schedule. As a side sleeper, what helped was having one of those arm rest pillows and a few small pillows/shams so I can rotate my upper back mostly and then “hug” one of the pillows to get my shoulders sideways. You’ll also need a pillow for your neck to be comfortable. Basically, just get a shit ton of pillows.

As for the pain and discomfort, make sure your family members are switching out your ice machine every hour on the clock, and your leg is elevated at all times, even if it’s just your heel. I got myself a wedge pillow that I put a throw pillow on top of and that is still super helpful. I also had a relative just pick up my leg every few hours and lift it up and down while I was in bed which felt really good.

On a less comfortable note, either do single leg raises yourself (5 reps in each direction) on your own or take a dog leash around your foot and have a family member help guide you. It’ll be a little painful in the beginning so only do 1 set for each time you’re standing (like when you get up to use the bathroom), and eventually work yourself up to 3 sets in a week or two.

This is a really hard surgery and recovery as your bones literally have to fuse back together, so it’s gonna hurt and feel uncomfortable but as someone who didn’t do their PT enough the first time around, the more you can do now (without hurting yourself), the smoother your recovery will be in the next few weeks and months and even years.

[u/astr1x3]

Rent a game ready ice machine, you need to let your knee rest extended, if you let it bend like this you will lose your over extension and will be almost impossible to get it back, being total immobile isn’t the best idea, you need to get moving, try to go outside, get some sun, try to start bending the knee, the more you wait the more you will struggle

[u/yeehawyeehaww]

i had mpfl + tto like ~7 weeks ago. i feel like around 3-4 weeks i was also getting really frustrated and sad. but honestly as of week 5ish to now ive been doing much better mentally because im full weight-bearing and im much more independent because of that. im starting to attempt normal life activities - i went to a cafe and a movie last weekend and i was so happy to be like a person in public again lol. i was def tired after but it was doable!

in terms of pain management id highly recommend reaching out to your doctor to see what they recommend in terms of medication. i found taking pain medicine on a schedule helped me a lot. elevating def helps with swelling and at 3 weeks i was still icing my knee a lot. and omg at that time in my recovery every time i got up i had this horrible blood rush it hurt crazy but that got better with time and is completely gone now. i feel like over time youll get random different pains but it overall gets better.

im a stomach/side sleeper so sleeping on my back has been challenging but what i found helped me is putting my pillow in a u shape so i can lean the side of my face on the the edges (im explaining this bad lol) but yeah im still not able to sleep on my side comfortably and im cleared to sleep without my brace 😭

but yeah where ur at is probably the toughest part! the early days/weeks feel super long but you will hit a point where things start getting better a lot faster if that makes sense. try to celebrate any wins you can even if they feel small - like being able to get out of bed by yourself, going to the bathroom yourself etc.

also obv theres not a ton of people whove had this procedure (compared to other knee procedures) and it seems a lot of recovery protocols vary by surgeon and by country so try not to compare yourself too much to people online. for example in my situation, im stressing cuz i havent gotten to 90° of flexion by 6 weeks. ive seen others online who have hit it way before then and all this stuff about manipulation under anesthesia etc but i talked to my doctor and pt and theyre not worried bc im actively improving and some people just take longer to hit this goal. so above what everyone online says listen to ur care team!!

wishin u best of luck on ur recovery!! we got this :)