Limb Lengthening, Week 1: The Surgery and Initial Recovery

8/11/19

08:33 

Wow. Surgery in a couple days. I’m sad that I’m leaving work. It’s occupied so much of my free time. It’s made me frustrated. It’s made me really happy. I miss it already. Only one Sunday service left and that’s it. Good luck. 

8/14/19

05:48

Surgery day! I don’t really know what to say...I have a lot of emotions running through my head right now. I’ve been anticipating this for over a decade. Good luck.  

8/15/19

11:36

Yesterday I woke up, then fell asleep, then woke up, then fell asleep. The incubation tube left a pretty big welt on the inside of my mouth. And no, I couldn’t feel anything. Entire left side of my body below the hip was numbed via spinal nerve block. Now that local anesthesia is wearing off, I can tell you with 100% confidence that I can feel every single incision. It feels like I have a railroad spike in my leg. It’s a very different type of sensation to have something inside your bone. Oh that’s the other thing: yes, I can feel the cuts. All 6 incisions on the side of my leg burn a little. But my femur is also broken. So previously I’ve only dealt with the superficial pain of the epiphysiodesis. This pain (excluding the incision pain) feels deeper. It’s not so much of a sharp pain or a burn, but more like a underlying soreness. The pain right now is manageable; it’s definitely there, but I’m still able to work on my computer and get stuff done. It hurts to rotate my femur in any way, too. I found that out the hard way when I got up for the first time this morning. When I put my left leg down, even its own weight was enough to cause me pretty intense discomfort. At that point I considered releasing another wave of drugs into my spine but I am so damn motivated to go through this surgery feeling every bit of it. So I didn’t. I also had my first meal today. 4 pieces of white bread with butter, jam, and something that resembled peanut butter but no one was allergic to. I haven’t eaten like that since I was 6. These are some of the only times when I’m allowed to eat empty carbs and sugar. And I really enjoyed it.

14:20

Update: even with these super-comfy hospital bed things, It’s impossible to be completely comfortable. This is because all the incisions hurt because I’m sitting on them (kind of). Also, my left leg rotates to the left, so there’s more pressure on the incisions anyway. Bone and muscle feel weak but whatever. My head feels clear though. The nurses here are amazing. I am insanely lucky to be here right now. And that is difficult to write considering how my leg feels. I was asked to get up again. Honestly, one of the worst pains I’ve ever felt was the nurse holding my leg while I got off the bed. It makes sense: my bone is broken. There’s a rod holding it together. Gravity pulled down on that break and made the pain pretty bad. Not sure if Tylenol is rated for limb length surgeries or not. I sure hope so.

16:08

Bored of being in the hospital, and I’ve only been conscious for 16 or so hours, maybe I will take a nap. I’m already bored of doing nothing. Can I go back to work now? Leg still hurts. It’s frustrating that the doctors want me to stay til Saturday. That feels unnecessary. I feel a little tired, but its a deeper muscular weakness that I feel, not a “I didn’t sleep enough” weakness. Sleeping should be easy. The spinal nerve blocker thing which supposedly is blocking off all pain from my leg is still in my back, and considering I don’t plan on removing it, I would love to get it out. Have fun sleeping! In a hospital which never sleeps!

8/16/19

07:17

Still here in hospital. Hopefully I can get out soon and go back to the comfort of my own home. Just gotta prove that I’m not constipated and pass the PT exam. 

07:27

Aced PT exam. The iv bag is getting low. Again. Gonna go home soon. The bumpy ride home will be really uncomfortable. Every rotation of my femur hurts. Left, right, up, down, etc. All painful. 0/10 do not recommend rotating your femur.

09:18

Walked up to the rooftop garden and didn't black out. Good stuff!

11:08

The car ride home was not fun. Potholes supreme. We are never taking that route home again. Suggestion for anybody going through this surgery: try and minimize every rotation possible. Lateral side-to-side movement doesn’t hurt that bad. But any sort of rotation feels not so bueno. Since the bone has been cut, any sort of pressure on it is super uncomfortable. Especially the rotation, because normally people have one whole femur in their left leg, not two different parts.

8/17/19

08:00

 I slept downstairs last night because I didn’t feel strong enough to go up two flights of stairs. I woke up in the middle of the night and felt a weight foreign presence on the top of my head. I reached up and touched it and felt that it was a hand. I had no idea whose hand it was, however. I thought that maybe one of my family members had come down to check on me and inadvertently fallen asleep, but that seemed unlikely. So with my left hand, I reached up to the top of my head where the mysterious hand rested and lifted it up. I then casually threw it off my head. I was irritable. To my horror, I realized that it was my right hand that had been resting on my very own head. It had fallen asleep. It was so asleep, that when I touched it, it felt as though it belonged to someone else. This experience was so surprising and mind-blowing for a sleep-deprived teenager I’m sure I will remember it months from now. Anyway, I can move now. A little less pain and I’m just on Tylenol.

19:03

Day was boring. I miss working. I like being productive and that’s hard when your leg is immobile. BUT: I can semi-flex my quad now; its still weak and doesn’t fully engage but it’s a start. I’ve been working on using my quad. Trying to lift my lower leg, everything from the knee down, by using the quad muscle. It wasn’t cut or anything but it still seized up and doesn’t want to engage. 

21:29

First time I showered in a couple of days which was much needed. Something I hadn’t considered: underwear is not  comfortable to wear because the scar where the doctors inserted the rod is right where the elastic band wants to rest. ALSO, my bed is too high. It’s difficult to get up there. ALSO it seems like there’s now comfortable point to rest my leg. No elevation hurts; too much elevation hurts; slightly rotated any direction hurts. That’s a benefit of not being knocked out 24/7 with drugs; I can feel my body responding to the surgery and understand which parts hurt and whatnot. That way, the recovery process feels more like a conscious journey.  

07:13

8/19

Yesterday was fine. I spent a lot of the day moving around. Pain managed by Tylenol so slight irritation but not too bad. This is the 3rd day since coming off hospital drugs and I can definitely feel the pain, but because I know where it’s coming from, I can manage it. It’s like a dull ache that my whole leg is feeling. Same kind of soreness that I’d expect from a muscle strain. Also the burning sensation around most of my incisions. My leg is still super swollen. I used an infrared thermometer and recorded the skin temp was 95º which is pretty impressive considering my other leg is only 84 degrees. The knee swelling hasn’t been very bad, which means that my knee cap is a lot more moveable. I can practice my quad stretches.

07:32

I went down the stairs today with no problems whatsoever. The secret was using one crutch, and one arm on the handrail for extra stability. Whole leg still feels sore and partially dead. However, it’s not raining anymore which is an upside. 

13:55 

Now that it’s mid day, I’ve removed my exterior bandages and let some swelling happen. My leg turns purple after walking. Probably because blood supply right now is limited. I am able to flex my glute and my quad now. So far, not much atrophy is noticeable. Interestingly I’m feeling some pain over my epiphysiodesis site. I’m guessing old nerve damage or swelling on my kneecap from the IT band incision. Still only on Tylenol. 8 hours apart. IT band incision is pretty sore, but screw incisions don’t hurt that bad. They’re pretty small. Most of pain is probably coming from bone trauma that should start to subside soon. I hope I don’t break the rod. I’ll be careful, Mom. 

21:53

8/21

Feel fine. Most pain gone from IT band cut and lower screws. Most pain in the quad from flexing it (about 3 inches up and almost 100% flexion without any tremoring) and in the hip. 

19:47

8/22

Miss work (!?). Already tired of crutches. At least time seems to pass faster because it's the same thing every day. But school is coming nearer and nearer. Leg doing fine. Hip is pretty hot but swelling seems to be going down a little. I’m doing Tylenol every 12 hours now.

08:03

8/23

Today we are going in to the hospital for check up. These past 9 days of recovery have felt pretty decent. I feel like I’ve been able to heal a little bit and things seem to be looking up. 

Similar experience with my previous knee surgeries: pressing on incisions doesn’t hurt but when I get up or walk they feel like they’re being dragged down on. Weird. Maybe it’s the sutures?

18:57 

Meeting went well. Met the Precise Nail representative and  saw some cool xrays of what my leg looks like. Now that the bandages are off I can see how they closed the incisions: staples! The staples look kinda frankenstein-y but supposedly the healing lines are super clean. We shall see. 

07:31

8/24 

About to lengthen for the first time. And so it begins. Pretty excited.

08:03

Oops. I didn’t take any Tylenol so the leg hurts a little and I’ve also run into a familiar problem: stiffness. Normally after about a week or so of recovery my leg begins to set in to its stiffness. After surgery there’s an initial muscle atrophy/stiffness response and then a few days later it begins to set in like that, especially if not moved. That’s why getting up is important. I took the medicine and hope that I’m able to stretch the leg soon. I’ve also noticed that my left leg is rotated a little to the left. This isn’t great because I end up leaning on some of the scars while trying to sleep. The hip incisions don’t hurt; the two small screw holes don’t really hurt. The IT band incision doesn’t feel too great; the entire left side of my knee is swollen and aches kinda like a muscle strain. Which is understandable considering it’s been sliced lengthwise. 

17:04

Lengthened again. Machine is loud. They said I shouldn’t feel anything while lengthening but I do. It feels like a shin splint is happening, super slowly. Near the 0.20 mm mark my hip starts to hurt a little and by the time we are fully done it feels like my entire leg has been lightly fractured. Not sure why this is. 

23:13

Supposedly lengthening just gets easier. In better news, my coloration is slowly getting better, and I’ve started to put about 5lbs of weight on my leg. 

07:32

8/25

Almost school. About to lengthen. Not gonna be fun. Or maybe it will feel better?

07:47

Lengthening was fine. Still some discomfort. After I lengthen I usually lie in bed for another 10 min while the pain subsides. Doesn’t feel right. Maybe your future self has some wisdom for you?

8/26

07:59

Hmm. Feels like I’ve gone backwards in the recovery side of things. I thought it wouldn’t be hurting at this moment. There’s a pretty bad searing pain in my left femur near what feels to be the osteotomy site whenever I move it. It’s one of the worst pains I’ve ever felt. 2 days into lengthening and everything  seems to be  going  backwards; it seems like the  recovery  I had done the first couple of weeks is being undone right now. Lengthening didn’t hurt too much today but the aftermath is still pretty uncomfortable. I just thought that by now, almost two weeks post op, I would be relatively painless and not worrying. I’m kinda right tho, my scars don’t hurt, they look good, and my muscle strength was strong. But this all changed when I started to lengthen. At this point getting up from the cough hurts pretty bad. Lifting my leg is even worse because any movement that is not gentle and neutral doesn’t feel very good. Definitely feels like bone pain, however. The area around my IT band “feels” like  muscle pain. My hip and osteotomy site feel deeper. Makes sense.  

18:25

Day was fine. Painful whenever I move the leg. Lengthening is well underway at this point.

09:58 

8/27

School is very soon. Really exciting. My knee coloration is looking better, all scars look good, but some of the staples are a little loose. Knee flexion is good, and my quad  is gaining back strength. However, every single morning when I wake up, my leg is insanely tight. I guess it makes sense. I stretch the muscle with the  machine, then it tries to heal, then it gets stretched again. Not a super productive way to recover, it seems.