This is the diary I’ve been keeping since the day after surgery. I’m not going to sugarcoat anything here. I’m not going to downplay any problems or act like I’m doing any better than I am. If things are bad, I’m going to tell you. If they’re good, I’m going to tell you. I may give more detail that you want. But I just want to make sure that people going into this procedure have as much information as possible. There are certain aspects I wasn’t fully prepared for, even though I have been lurking on this forum for years and have read countless diaries start to finish. If I can help someone else be more equipped, then I want to. In the end, though, this is only my experience. What is true for me may not be true for you.
As the process gets harder and harder, I may not come back to post much. Not sure how much I’ll feel up to it. But I’ll try to pop back in from time to time.
SURGERY DAY
Checked into hospital at 5:30. Since the hospitals aren’t allowing any visitors because of Covid19, I was completely alone. No family allowed. That was not part of the plan. Really wanted my wife to be there. And yes, I tried to postpone the surgery until after the pandemic, but was informed that I was going to lose all the money I had paid. So, that kind of forced my hand, even though it felt weird to be doing this surgery right now. However, it sort of works out well, because everyone is hiding out in their homes for who knows how long, so it hasn’t been weird for me to suddenly disappear. Everybody is disappearing right now. Nobody even knows I’m doing the procedure. They just all think I’m in quarantine like everybody else.
Anyway, I was held in triage for a couple of hours while they shaved my legs, started an IV, and did some intake paperwork. Not gonna lie, I was feeling really nervous. I had planned on this surgery for years. Time and time again I had come to the conclusion that this was something I needed to do to move past my dysphoria. But even as I lay there in my gown, waiting for things to get going, some part of me was asking myself if I was making a colossal mistake. Yes, my legs were short, but they worked really well. And here I was about to intentionally break and cripple them. Oh well, no turning back at this point. It was a disconcerting feeling. I spoke briefly to Dr. M, and I talked to the anesthesiologist. He and Dr. M decided on only general anesthesia, which I was happy about.
Eventually, they wheeled me back into the operating room. Anesthesiologist administered something he said would make me feel high. He wasn’t lying. All anxiety instantly melted away. An amazing feeling. Last thing I remember is being asked if I liked the music. I said I did, and BOOM: next instant someone is giving me a little shake. I was in my new room and the surgery had been completed. It’s literally that fast. There’s no pain. There’s no production. You’re not aware of anything having happened. If anyone here is planning to do it, know that as you move onto the operating table, you are literally seconds away from being in your bed with the surgery done. The surgery itself is like an invisible act that happens in an instant.
I was immediately very groggy and a little confused. The room was spinning a bit. But I felt no pain. I actually felt a little high still and fairly content. Dr M came in to talk briefly, but I can’t remember what he said. Just that the surgery had gone well and that he would see me the next day after I wasn’t so groggy.
I slept some, but eventually someone came in and said it was time for some PT. I was incredibly groggy, but I was game. As soon as I stood up, though, a massive wave of nausea hit me. Aggressively. I tried to fight it off, but then realized it was coming. Grabbed the little barf sleeve they had ready and dry heaved a few times. There was no food or liquid in my belly because I followed pre-op instructions, so nothing came out. I fought through the nausea and did some exercises and participated best I could. I stood up from the bed using the walker, and I was amazed at just HOW sturdy and stable my legs felt at that point. I could just stand there, not even holding on to the walker, on two very strong feeling legs that had only gotten worked on mere hours before. (This would change by the next day). But I was barely there mentally during PT that first day, and the pain was definitely kicking in. I’ll talk more about that in a sec.
After PT I was EXTREMELY tired. It’s impossible to convey in words how little energy you have or how little your muscles work. It’s like they’ve been disconnected from the system and you have to spend the next weeks rebooting them. I’m talking immense focused effort and concentration to slide your foot just an inch forward. It’s shocking. So much is offline. I found that I particularly struggled with lateral movements to the side. This was likely due to the IT band release. I’m not sure. Forward and backward is easier. For me at least. But right now as I type this on the day after surgery, it’s extremely hard to lift my leg and move it left or right. Very painful.
But what is the pain like? I know so many of you are wondering about this. This is what I always wondered about too, and I didn’t ever feel like I got a clear description of it from other people who have been through it. All I can speak about is my case so far, but I’ll say this: at this point, it’s much more “achy” and “tender” feeling. Rather than being sharp like a knife or an ice pick. I honestly had no idea what to expect, and I was afraid it would be sharp and jagged. I’ve had none of that really. There are moments sometimes that feel like they MIGHT be going that way every once in a while if I move wrong. But it usually ends up not. Most of the pain is broader and duller. Don’t get me wrong; it hurts. It’s not fun, but so far this is a kind of pain I can deal with.
After surgery, the rest of the day I was on an IV painkiller, specifically Duladid. This was self-administered by pushing a button next to my bed. You could only push the button once every ten minutes. Once you pushed it, it would lock you out until 10 minutes had elapsed. Then you could administer again. Can’t remember how much was in each dose. But this stuff was amazing and really helped with the pain. It also had this extremely odd time-warping effect that was actually pretty cool. It would stretch 5 minutes out into what felt like an hour or more. Super trippy. The reason I liked this was because I could go to sleep at will and have an amazingly pleasant sleep, complete with dreams, then wake up thinking several hours had gone by, when barely 10 minutes had. Which meant I could just dive in and out of the most luxurious feeling sleep over and over countless times through the day. It was just this long extended session of beautiful naps that felt amazing. I remember thinking that I wish that feeling would last for a long time.
With the Duladid, even if you felt some pain, it’s like it didn’t register as pain. Or maybe it did, but your brain just didn’t mind it. The general anesthesia was also still in my system most of surgery day, and the combo of it and the Duladid was responsible for the amazing sleep and the distorted time. I was honestly in great spirits. I called my wife and she couldn’t believe how positive I sounded.
I found that as long as I was lying back on my pillow with my eyes closed, I felt fine. But if I opened my eyes and lifted my head, instant wave of nausea. Not sure what that was about. They also had a CO2 monitor affixed under my nose. If my breath ever became too shallow or had too much CO2, an alarm would go off in my room to startle me awake (and also to alert the nurses, though they tended to ignore these alarms). The alarm was mainly to startle you awake and get your breath back to normal. So for a long stretch that first afternoon/evening, EVERY time I would finally drift off to sleep, my breath would go shallow and the alarm would jolt me awake. It was a cruel joke. After a couple of hours, I found some odd extreme head position that allowed me to fall asleep without setting off the alarm.
Late in the day that first day, my anesthesia started to slowly wear off, which meant that my nausea gradually got better and better. They do have an anti-nausea medicine they can inject into your IV line that basically instantly kills nausea. It’s amazing. I would ask for it before your first PT. Or else you won’t even be able to focus.
DAY 1 (first day post-op)
On the first day after surgery, Dr M came by early in the morning and checked my legs (he grabbed hold of my quads and kneaded them like bread dough to see how soft or hard they were; surprisingly, it didn’t hurt at all). He said they felt perfect. Nice and soft and smushy, rather than hard and taut.
I had kept ice packs on my legs all day as I lay in bed. This helped keep down any swelling. Works well for this.
However, things started changing for me after late morning. Dr M took me off the self-administered Duladid and put me on standard Norcos, the same thing I would be taking during those first weeks at home. He wanted me to start getting used to “real world” meds. And let me tell you, there is a HUGE difference.
Mid morning, I took my last Duladid hit (bye old friend), and took my first Norco. Just one. I needed to assess its powers. I asked for the anti-nausea medicine to be administered into my IV before PT. It honestly is amazingly effective. And virtually instant. PT came in and we started working out, and immediately I realized how much my pain level had gone up. It was QUITE a bit. This was a combination of the weaker meds and the naturally growing pain and inflammation. PT was extremely difficult and painful. Again, for me it was largely very strong feelings of tenderness and broader areas of pain that was certainly not fun, though tolerable. But occasionally I would move a wrong way and the pain would shoot up to a sharper 8 or 9. I’d quickly undo what I’d done and the pain would stop. It was a very difficult session. Therapist told me that for PT sessions, I’d be better off with two Norcos, and drop down to one every four hours for the rest of the day. During this session, I would sometimes try to move my leg and there would be an AWFUL pain in my right upper quad. At one point, I moved my leg and there was a distinct “pop” and excruciating pain. My leg buckled and we rushed me back into bed. I was concerned.
I spent the rest of day in bed icing my legs, trying to get the pain back down. It was at an all-time high. After another norco it was fairly manageable and I was able to get some sleep.
Dr M had warned me that the day after this was usually the worst. The day when the pain peaks. I was dreading waking up in the morning.
DAY 2
Dr M was correct. This day was a nightmare. The pain was high and fairly constant. The pop from the previous day was concerning me, and the pain that had accompanied it had not gone away. I felt awful and was definitely regretting having done the surgery. It was a very rough day mentally. I had a PT session that did NOT go well. I had regressed and could barely move anything. I was supposed to be checking out and going home that day, but the therapist determined I wasn’t ready. My inability to move my legs at all while lying in bed was really starting to freak me out. I simply could not make them move. It was like all my muscles had gone offline. Very scary. Dr M came by and checked things out and said not being able to move was normal and it would get better. He also was not concerned about the pop and said I shouldn’t worry about it. Easier said than done.
DAY 3
Woke up with noticeably improved pain. Still not great, but better than previous day. Dr. M was right about the pain peaking on Day 3. I arranged for a non-emergency ambulance service to come pick me up from the hospital and take me home in a wheelchair. My house has stairs to get to the front door, so they had to lift me up the stairs in the wheelchair. All of this was EXTREMELY uncomfortable and painful. But I was finally back home and so happy to see my family. We had rented a hospital bed which was placed in the living room. This would become my base. I’m so grateful I took that step, because the ability to raise and lower the bed has proven invaluable.
DAY 4
First day of PT at home. PT therapist was great and had worked with many LL patients. However, I was not prepared for the pain that was to come when he forcefully bent my legs past the point they were stuck at. My legs weren’t yet at 90 degrees, and he made them go to 90 (and beyond), and the pain was beyond anything I had ever imagined I would experience in life. I have decent pain tolerance and am very accustomed to pushing myself to intense discomfort and beyond while exercising and working out. I will tolerate a lot in the name of progress. But this was a level of pain beyond anything I could imagine. It was worst in my right leg, the leg that had experienced the “pop” during PT at the hospital. Since that moment at the hospital, it had been incredibly painful and tender, with a dense knotted mass of muscle mid thigh. Hard to describe. But when the PT bent my leg during this first post-hospital session, I guess that area got compressed in the contraction and I simply can’t describe the pain. Off the charts nightmare pain that made me scream a scream I could never imagine escaping my lips. It was legitimately traumatizing. I’m not gonna lie. At this point I was truly regretting the procedure. I told myself that if I could get in a time machine and go back, I would not have done the surgery. The pain was unimaginable. Be prepared.
DAY 5-6
Still very sore and it hurts to move my legs at all. Still could not lift my legs, and even trying to drag my heels backward was extremely difficult for me. My muscles were just out of service and needed a lot of encouragement to get going again.
SIDENOTE: For everyone watching Movie’s progress videos (definitely watch them if you haven’t), it’s tempting to watch them and think “oh, hell yeah, I can do that! Look at that guy go! That doesn’t look that bad!”. Just know that Movie is a superhero who had some physical blessings that made the process a little more fluid for him. I won’t say “easy”, because I know it was hard on him for sure. But his experience was not typical, and you probably won’t perform the way he did, no matter how young you might be. Dude was simply so far ahead of the game that he’s now legendary. I remember seeing him in one of his videos lift his legs straight off the bed a couple of days after coming home from the hospital, and here I am unable to make them even budge a tiny bit at that same point. We all progress at different speeds, so don’t freak out if you aren’t progressing as fast as others.
PT continued, and the horrific pain continued as well. Seriously, I hate to harp on it, but the pain was off the charts horrific during the knee bends. I don’t know about everyone else’s PT experience, but if I’ve had this experience, it’s possible that others could too. If you’re considering doing this procedure, just know that this is a possibility. I had thought the PT would be hard and painful, but not at this level. It literally started to feel like I had a designated time each day where I knew I was going to have my leg dismembered with a chainsaw. Or bitten off by a shark. Or ground up in blender. I had to wake up knowing I was going to face unimaginably horrific pain that day, and it began taking a real toll on me. Sometimes after the knee bend I would be sobbing uncontrollably. Hate to admit that, but I’m trying to be truthful here. It’s the worst pain I’ve ever experienced. Hands down.
Also on Day 5, I had my first bowel movement since checking into the hospital. This is a topic that I don’t think gets discussed on here a whole lot, and I understand why. It’s not the kind of thing we like to talk about. But guys, this is something you need to be prepared for. [If you don’t want to read about somewhat detailed bowel movement information, skip to the next day’s entry.] Obviously, the anesthesia and meds they give you in the hospital are very constipating. The nurses at the hospital mentioned a few times how important it was that I have bowel movement as soon as I can, but there was no sign of that happening at the hospital. A couple of the nurses were even nice enough to describe to me what happens if you go more than a week after surgery without a bowel movement: they admit you to the hospital again and they do a procedure which extracts the impacted fecal matter through your mouth. I’m not kidding. I can’t imagine why that is a thing, but this is what they said. So I was very eager to get this whole thing under way as soon as possible. On the second day after surgery, the nurses offered me a stool softener called Colace, which is supposed to help your fecal matter absorb moisture to make it easier to pass. I took the Colace that day. Next day, still no sign of any movement, so I asked for another one, which they gave me. Still nothing.
The next day at home, I still had no sign of any movement, so I took a third Colace (which can be bought over the counter at CVS). Finally, the following day, I could feel something happening and painfully positioned myself on the toilet. After struggling and pushing, I could finally feel something about to exit, but then to my horror I realized how impossibly large and hard this object was. The fecal matter had just compacted into this huge, dense thing with very little moisture. There was no possible way it was going to be able to exit my body without brutally ripping me open. Sorry to be graphic, but this could happen to you too. You need to be prepared. It was incredibly wide and incredibly dense and incredibly hard. Like trying to pass a rock the size of a cue ball. In a slightly panicked state, I looked around at what was nearby that could help. I won’t go into too much detail, but I had to manually break this large piece into smaller pieces before it could exit. And it was still incredibly painful. And it was only a small portion of what was to painfully exit my body of the next few days. (Pro tip: a little lube will help make things a bit easier. Astroglide is your friend.)
Here’s the issue: they didn’t give me a stool softener until days after surgery. What this means is that all the food I ate the day before surgery and all the food I ate at the hospital in the days after surgery was just backing up inside of me and hardening all that time. Once that happens, there’s only so much the stool softener can do. Even with THREE doses of Colace in my system, the first stuff to come out of me had virtually no moisture; it was incredibly dense and dry and difficult to pass. If I had it to do over, I would take a stool softener the day of surgery or the day after. No later. This way, everything is given a chance to remain soft and you avoid having to deal with such a painful situation. Sorry to spend so much time on this topic, but it was NOT something I was adequately prepared for. And it definitely added stress and pain to an already stressful and painful time.
DAY 7
Met with Dr M for the first time since discharge. Not much to report. I wanted an x-ray so we could see what might be happening in my right leg (the one that had popped in the hospital and which always has such awful pain). But Dr. M said he wouldn’t do an x-ray for another two weeks and that I’d have to wait. They removed my bandages and we talked about how things were going. Went home and started lengthening for the first time. First session with the ERC, I felt nothing, just like people say. The second session though… umm. I could absolutely feel something happening in my left leg. It was a really disconcerting feeling. Not painful, but not pleasant. It was like a regularly repeating “bump” or pulse inside my leg. Or maybe like a strong, short spasm. I could feel it and I could see it. My quad would literally pulse. I didn’t know what it meant, and I still don’t know. Right leg I have only ever felt nothing.
DAY 8
PT again, and for the first time, I was able to lift my feet vertically off the bed. Just a couple of inches, and I had to focus ALL of my strength and energy to do so, but it felt amazing to see my control starting to return. More nausea-inducing knee bends, and I felt like I was dying. I became determined to change this by finding my own way to create the knee flexibility without having to be pushed into nightmare territory by the therapist. More gross feeling in my leg during lengthening.
DAY 9-10
I started working on my own knee flexibility program. I needed to show the PT that they didn’t have to do that part. Or else I was seriously going to lose my mind. Over the next few days, the process I eventually settled on was this:
1) Start morning with a long hot shower, seated on a shower chair. I let the hot water beat down on my legs. I massage them while that happens, loosening up the muscles. During the shower I gradually move my feet farther and farther back, tiny little increments at at time, until I am able to bring my leg bend to 90 degrees. I gently roll a shampoo bottle over my muscles, soothing them and encouraging them to stretch (almost like a foam roller, but more gently).
2) After I get out of the shower, I sit down on a chair in my living room and again bring my legs as close to 90 degrees as they’ll go. Sometimes after the shower, they hit 90 very easily, because they’re loosened up. While I hold them in that max stretched position, I gently use a massage gun up and down the muscles, being careful to avoid my osteotomy site. After I do this for a while, I find that I can move my legs back a little more, since the muscles are now looser. So I move them back again as far as they will go and I repeat the process with the massage gun. It can take 30 minutes or an hour, but I’m eventually able to get both legs to bend well past 90 degrees. And I just hold them there as long as I can tolerate.
The only problem is that, the next day, I’m back where I started, still struggling to get the legs to 90. I feel it gets a tiny bit better each day, but to really get that flexibility to stick, it’s either going to take multiple stretching sessions each day (which sucks, because it hurts during and after), or it’s something I’m just going to have to develop over time. Either way, it’s better than the PT bending. Good god.
I think part of the problem is that I’m lengthening each day, so whatever stretching progress I make sort of gets “cancelled out” by the increase in bone length, even though it’s very small.
DAY 11
The four times a day lengthening is starting to become very uncomfortable. My legs are definitely worse off after lengthening. Sometimes it’s an obvious tightness, but most of the time it’s just a very unpleasant mild “burning” sensation running from my glutes, down the side of my leg (IT band), and to my knee and into my tibia. VERY uncomfortable and hard to ignore. I use ice and my wife massages the area and it helps. But the feeling is gross. Fades gradually over next couple of hours.
DAY 12
Down to three times a day lengthening. Thank god. Therapist had been encouraging me to take steps unassisted, and I had been unable to do it. I just couldn’t make my legs do it. I didn’t have the strength in my right leg to stabilize and balance. But on this day, I woke up feeling a new level of strength and stability in my muscles. Probably from all the PT exercises we had been doing to activate my glutes and hip muscles. I went into my kitchen, and while standing between the counter and the island (so i had something to grab onto if needed), I tested my ability to take steps unaided. To my surprise, I could do it. Lots of hip sway, not pretty at all, but I took 8 steps while holding onto nothing. I was excited that my body was starting to work again.
DAY 13
Crazy sore and weak from the walking and exercising I did the day before. Really felt like a step back. Ended up spending most of the day in bed, not moving. Starting to realize that I have to be more cautious and that I can’t push my body too hard yet. I’ve done a lot of weight training in my past, and the concept of pushing myself hard through progressive overload is the way I would typically go about solving the problem of a weak body area. But as my physical therapist has now explained to me, that is NOT what we’re doing at this part of the journey. It’s less about building muscles than it is about regaining the usage of the muscle I already have. It’s more about stretching and activating. Rebuilding muscle will come later in the process. Lesson learned.
DAY 14
Got my stitches taken out. Uneventful. But the car ride to and from the doctor was definitely not comfortable. About 30 minutes each way. Also had to go up and down stairs at home using crutches. Took a lot out of me. Was exhausted and in pain. But my legs definitely feel better with the sutures gone. Much less tightness and pulling when I stretch and bend.
DAY 15
Very sore, but had a good PT session. After a bunch of exercises with resistance bands, my legs were feeling a little better. PT had me try walking unassisted again. To my surprise, I did it much easier than I had anticipated. Yes, there is discomfort and tenderness, and it’s not pretty or super smooth, but I was able to walk back and forth in my kitchen several times without holding onto anything. i was even able to smoothly turn around. PT therapist says I need to stop using the walker now and use crutches as much as possible. Says that prolonged use of the walker slows down your return to proper walking. So, I’m trying to use the crutches as much as possible now. It’s taking some getting used to.
DAY 16
Wow. SO sore. I think mainly from all that resistance band work and walking. Very uncomfortable day. Lengthening is also starting to get more unpleasant. Right after lengthening, the feeling is pretty awful. Burning and uncomfortable. Best part of my day is my morning shower. Sitting in there with the hot water beating down on my legs feels like heaven. I’ve never looked forward to bathing more in my life.
Night times are not great. I dread going to bed, because after a few hours in bed, my legs get extremely uncomfortable. Always looking forward to morning and getting things moving again. My amount of sleep is not good. I usually get 3.5 to 4 hours of sleep in one go, and then my wife has to put ice on my legs because they are so uncomfortable. After that, I’m able to get another 1.5 hours or so. The longest night’s sleep I’ve had since I’ve come home from the hospital is a little under 6 hours. But it’s usually 4.5 - 5 hours. Not enough. It’s taking a toll on me.
My wife and I checked my height by making marks on the doorframe today. I’ve gained a little over half an inch so far. Really great to see hard physical proof that I’m taller. I won’t know until my next appointment in a few days how the bone is healing/growing. But at least I’m a little taller already.
DAY 17
Another bad day. Very sore and very weak. I dread each lengthening, because I know it’s going to be followed by a period of extreme discomfort. Walking is very difficult right now as it triggers pain in various parts of my legs. Hurts at the hip, almost as if the ball-and-socket joint itself is hurting. I’ve also started to feel more pain at the osteotomy site on both legs. I don’t like that. Hoping it’s normal. Will feel a lot better after my next appointment when Dr. M takes x-rays to see how everything is looking. The pain that is sometimes triggered in my right leg continues to be a big problem. It’s beyond excruciating and is really getting in the way of things. Starting to realize that this uncomfortable feeling I feel from using the ERC is going to be with me for months. Which sucks, because it’s hard to focus and DO anything with that awful feeling constantly burning through my legs. Realizing I’m probably not really going to feel better until I’m done with distraction, and that’s a bit sobering.
DAY 18
Another minimal night of sleep, though slight improvement in pain when I first got out of bed to walk. But then when I was getting into the shower, I guess I put weight on my right leg the wrong way and the excruciating blast of 10/10 pain stabbed into my leg. I’m sure my neighbors are wondering who is being tortured in my house, because they had to have heard the scream. Feels like my leg is breaking in that moment. And it feels like it’s right at the osteotomy site. Not totally sure, but it’s difficult to explain how painful it is. Once I stabilize my leg, it takes 5-10 minutes for the pain to fully drop back down, but it kind of lingers for a long time after. Gotta figure something out here, as that leg it like a ticking bomb waiting to go off at any moment. I never really know when I might experience that horrific pain again. Sometime the slightest movement is enough to trigger it. Good PT session, though. I find that what is helping me the most at this point is stretching out my hips. When we do that in PT, walking is so much more comfortable. Knee bend is not great right now, even though every morning I make sure to get my legs to 90 degrees or better while in the shower. That is not translating to usable range later in the day. Therapist suggested I do my knee bends and a round of other leg stretching immediately after lengthening with the ERC, to help minimize some of the discomfort from the lengthening. I did that during my second and third lengthenings today, and it did make a difference in my discomfort.
DAY 19
Day started great. I took “Hyland’s Leg Cramps PM” last night to see if it would help with the pain in my right leg. Seems to have helped some. Slept pretty decently, though still didn’t get a full 6 hours. Getting out of bed, I felt strong and relatively pain free. A little tender here and there, but less than before. The intense stretching after lengthening I did just before going to bed probably helped. Had to sit still for an hour long meeting on Zoom, and following that, I was pretty stiff and sore. Especially in my hips. Damn. Was going so well. PT came, and we focused on loosening up my hips. Did lots of resistance band exercises, which are hard, but which feel like they definitely make a difference. Hip pain was improved quite a bit, but damn my legs have started hurting again. New weird pain behind my right thigh too. Always something new with this process.
DAY 20
As I approach three weeks post-op, I can definitely feel a lot of the general tenderness fading away. There are a lot more movements I can make that are pain-free now. For the first couple of weeks, there was at least a some discomfort with most movement. I can see that changing. Legs are getting stronger. Therapist recommended low-dose THC edibles for nighttime. Can report that they do make some difference. Not only does it help keep me asleep, but it does help some with pain. Seems to help most with muscle pain, but doesn’t do as much for the referred nerve pain I feel in my lower legs. But for instance, with the edible in my system, I can push my legs much further into a knee bend with little to no pain. Not sure how long I’ll use them, but I’m testing it out.
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Topic: DIARY: Stryde femurs - Dr. Mahboubian - March 2020 (Read 7346 times)