Hi guys - I had my surgery with Dr. Mahboubian two weeks ago. Stryde in femurs. I’m keeping a journal and will post it here in bigger chunks as time goes on. Right now, I just wanted to get a little feedback on where I am from some of you who have been there before.
I’m on my last day of lengthening 4 times per day with the ERC (I switch to 3 times a day tomorrow). Definitely in a fair amount of discomfort and pain, though I’m managing. I’m completely off Norcos, though I do pop one just before PT. Otherwise, I take Tylenol which is surprisingly effective, at least at this point. I get around fairly well on my walker (some days are more painful than others), and I walked unassisted yesterday for the first time. Only walked about 7 feet, and it wasn’t pretty, but it was encouraging to see that I could.
My biggest concern right now is that I can only get my legs to bend 90 degrees. My left one can go a bit beyond 90, and if I push really hard (and really painfully), I can get my right one a bit past 90 as well. But for the most part, I’m stuck at 90 and have been for days. My question is, is this an okay place to be at this point, or should I already be well past this mark? I don’t want to fall too far behind. But it’s hard for me to know what “behind” actually means at this point. Any input would be appreciated.
Will be posting more details about my procedure here soon. Thanks.
DIARY: Stryde femurs - Dr. Mahboubian - March 2020
Thanks for the input guys. Makes me feel a little better. I think one problem I’m encountering is that I spent so much time stretching my hamstrings in the months leading up to surgery, and I neglected my quads a bit. Dr. M. said he really wanted me to be able to touch my toes before surgery, and I found that in order to do that I really needed to loosen up my hams. They were super tight. So I stretched and stretched those hard and got them super loose. By the time of surgery I was able not only to touch my toes, but I could also curl my hands under my feet.
Really wishing I had spent as much time stretching my quads though, because that’s my main limiting factor right now. Quads not wanting to stretch. My right leg is way worse than my left. There is a part of my right quad that is very dense and extremely painful, slightly off-center, toward the inside. Almost like it’s constantly flexing or knotting up, even when my leg is at rest. Has been since the day after surgery. Swollen and tender. When I do anything that forces my quads to engage, that dense area gets squeezed and it kills. My left leg is great though. Strong and relatively pain free. Just need this issue in my right leg to die down. Have some swelling in my right ankle as well.
And yeah, Movie, I think you definitely went into the surgery with some factors that worked in your favor. Good flexibility for sure, but I’m thinking your quad strength must have been pretty high as well. Probably from all the soccer? Seeing in your videos how you were able to lift your legs out in front of you and hold them just days after surgery is mind-boggling. I’ve had to work hard to wake my muscles back up and get them to be able to lift my legs even a little. You were just whipping your legs up! You had some strong legs bro. If I had it all to do over, I’d make sure my quads were flexible and strong before surgery. First priority.
I’ll post my stats and reasons for doing surgery when I post the first part of my diary. Soon. Just good to get some feedback from forum veterans. Thanks!
Finally starting my diary here:
STATS
Age: late 30s
Gender: male
Starting height: 5’ 7” (170 cm)
Goal: Of course, I would love to reach 5’ 10” (178 cm), but I’ll be more than happy if I can get to 5’ 9” (175 cm). Honestly, whatever I am able to get out of the procedure will help address my height neurosis and dysphoria, because at least I’ll know I’ve done what I could to improve my situation.
Background: Happily married for 16 years, father of three. Built and sold my company and am happy with my life. I’m not doing this procedure to up my odds with the ladies or to increase my chances of professional success (though I certainly do not judge anyone that is hoping the procedure will help them in those areas, because I’m sure that it would.)
In my case, I was always one of the taller kids growing up. It wasn’t anything I ever thought much about: it was just how things were. Being taller than average was simply my reality. This remained the case until just before high school, and by that time it had solidified as part of my personal identity. During my physicals, the doctors always predicted I would end up 6 feet or taller, based on my growth history and my height compared to other kids my age. But then just before high school I developed a condition which caused my limbs to stop growing. Moving into high school I had to watch as most of those other kids who had been shorter than me shot past me and were now literally (and figuratively) looking down on me. This was psychologically very difficult to reconcile. I had never been called “short” once in my life. I hadn’t grown up with that as part of my identity, and it didn’t correspond to how I felt inside.
I ended up as an adult who stands 5’ 7” (170 cm), but who has a sitting height of 37 inches (94 cm). So I basically have the upper body length of a guy who is 6’ 2” and the leg length of a guy who is 5 feet tall. (It sounds comical, I know, but in clothes it somehow works, probably because I’m fairly thin and wiry). But when I sit next to some of my friends who are 6 feet and over, my sitting height is either the same as theirs or taller. I’ve just got those crazy short legs.
I know that 5’ 7” isn’t considered that short to a lot of guys on this forum. And in a sense, I agree. I want to be clear that my height hasn’t stopped me from living a wonderful life. I’ve had incredible success in business, and I always dated truly stunning women (I eventually married one). Being 5’ 7” hasn’t stopped me. I’ve done well, and I’m very grateful for that. But I could never fully wrap my head around the fact that I was this height. Psychologically, it just didn’t feel “right”. It’s almost like I could sense what was encoded in my DNA. But reality is hard to escape; society doesn’t let you get away with it. I kept bumping up against the fact that the “inner me” did not match the “outer me”. And in recent years for some reason, this mismatch became more and more of a problem. It began getting in the way of my enjoyment. I just couldn’t shake it. Despite having a great life, I needed to somehow help my inner and outer realities line up a bit more so I could just stop thinking about it.
I found myself at a point in life where I had the money to do it, the time to do it, and a truly caring wife to help me through the process. Though I should point out that this isn’t something she pushed for in any way, and in fact it was the opposite. She tried to talk me out of it so many times. I had to convince her. And she was loving enough to support my decision and to help me through it. I could not be accomplishing this without her. I know some guys do it alone, but I just don’t know how I could have done it.
I’m never going to be the height I was originally intended to be. I’ll never hit 6 feet. I have no desire to do tibias, and with my relatively short arms, that would just look ridiculous anyway. This is one area of my life where I will be perfectly content to hit “average”. If I can get to 5’ 9” or a little taller (or even a little shorter), then great. I will at least be taller than I was. I approach things in relative terms — I don’t need to be a specific number; I just need to be “more than I was”. Of course, if I can go the distance and hit 5’ 10” and walk around at 5’ 11 or more in shoes, then that’s best case scenario. But I’ll be grateful for whatever I can manage.
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.
DAYS 21 - 28
I went in for my 3-week post-op appointment with Dr. M. He finally took x-rays. The news wasn’t great. There were two problems
1) First issue isn’t so bad. Left leg is lagging behind the right leg. This discrepancy isn't apparent when looking at my legs, but he says the x-ray doesn't lie. I was told I needed to move back up to 4 times per day on my left for two weeks to catch up. I have more range of motion in this leg, and Dr. M explained that this is because it hasn’t been stretched as much as my right one. He is hoping the bone hasn’t consolidated too much already. This issue was due to the fact that the line they mark on your leg with Sharpie (to show where to place the ERC machine) actually moves as the skin stretches. Eventually, if it moves enough, when you place the machine on that line, you won’t actually be on the right spot, and the nail won’t be activated properly. Dr. M used a compass to relocate the proper area, and a new line was made. Somehow, the original line had moved quite a bit and had been off.
2) This second issue is much worse. Apparently, at some point post-surgery, my osteotomy site on that leg “leaked” bone marrow or some kind of “bone juice”. This material traveled into my thigh muscles and has started consolidating. Yes, as the x-ray shows, I have bone growing sideways into my thigh muscle. I have never heard of this in all the journals I read, and it’s horrifying. I had noticed something hard starting to poke out from under my incision site on the side of my left thigh. But I just assumed it was dense scar tissue or maybe an internal suture that hadn’t dissolved. It never in a million years would have crossed my mind that it would be fu*king bone. It had grown so far that it was literally trying to poke out of my incision. Once Dr. M showed me the x-ray and then pushed on the bone, it dawned on me what was happening and I was kind of in shock.
He says that he has seen this happen several times (though he didn’t specify if it was with LL patients), and that there’s a 90 percent chance that if I repeatedly press hard on this new bone, it will gradually break down and the body will absorb it. Seemed hard to believe at the time, since this felt like legitimate, dense, hard bone already. But, I’m trying to stay positive and trust what Dr. M says. So, for this last week, I have been obsessively messing with this bone. I’ve been rubbing it, pushing on it, rolling a tennis ball over it, rubbing an empty bottle over it, using the massage gun to pound on it. Literally anything I can do to put pressure on it.
Fortunately, I have seen some reduction in the size (particularly the little “horn” that was trying to poke out of my incision site), but there still are some significant chunks under there. I can actually reach down deep and grab the pieces of bone and sort of move them around and squeeze them. It’s like rocks floating within my muscles. And when I bend my leg, I can feel them being squeezed by the muscle, which is an awful feeling. He explained that if this bone isn’t absorbed into the body, I would have to have another surgery to have that bone removed. He also said we want to avoid this at all cost, since it results in a lot of muscle damage.
So yeah, I’m a bit freaked out by this. I already had enough to worry about and pay attention to with this whole process. But now, I feel paranoid if I’m not using every spare second to press on this bone. I really don’t want to have another surgery that could potentially result in permanent damage.
Has anyone else had any experience with this issue?
For those of you who are interested, here is an x-ray showing the leakage issue. This was the x-ray that was taken from a 3/4 view. The leakage wasn’t as visible in the straight-on x-ray due to the angle.
When I first became aware of the issue, the material was extremely hard and seemed to be fixed in place, much like regular bone. Since I’ve started messing with it over the past week, it has become less fixed in place. Though it looks kind of like one mass in the x-ray, it’s actually multiple smaller pieces. I can move the pieces around a bit now. They seem to have maybe gotten slightly smaller and with more rounded edges than before. So, I have some hope that I am having some effect on it. The largest piece feels to be somewhere around 1” x 2” (2.5 cm x 5 cm), though it’s hard to tell exactly because it’s not right on the surface.
I have also realized that I have the same issue on the other side, though to a much, much smaller degree. Once I realized this, I went back to look at the x-ray of the other leg, and sure enough, there is a very faint line of material there. I’m not sure if Dr. M missed it, or if he simply knew that that amount of material would absorb on its own, so he decided no to mention it. But I’ve been working on pushing on that material as well to get it to break down.
It currently doesn’t cause much pain on either leg, but when I bend my leg, it does create quite a bit of pressure and tightness in the leg which is uncomfortable.
Quote from: dreamBig on April 18, 2020, 05:48:04 PMI have a question regarding the sharpie mark that is moved due to skin stretch, I have not read anything similar in other people's diaries. It seems it only happens on your left leg, but not on your right leg. If it is skin stretch, I assume this should happens to your right leg as well. Or could it be the sharpie mark was not correctly marked on your left leg in the first place?
Yes, this was a bit of a mystery to me as well. Dr. M told me this would happen during my very first post-op visit, but I had never heard it mentioned in other diaries. At my 3-week post-op, he used a compass to locate the correct spot and found that the proper spot was about half an inch higher than the line that had been marked on my leg. When he checked the right leg for the same issue, there was no issue and the line was still where it needed to be. So I am assuming that the line on the left leg was incorrectly placed to start with. Because otherwise the right leg should have shifted as well, especially since he was telling me that leg was longer than my left leg. Who knows.
DAY 29
A couple of days ago while I was taking a nap, I suddenly felt a pain in my right knee. When I reached down to feel the area, I realized that my entire shin was numb. It was also numb on either side of the shin. I’ve heard people mention this before, and I know it’s a common thing. Feels weird, but I’m not as freaked out about it, since I was expecting it. But it really happened in an instant.
The next night, I started to feel increased discomfort in my lower legs in the middle of the night. To my brain, it felt as if my legs had become incredibly inflamed and had swelled up like balloons. It felt like the pain would have been horrible if anyone had even barely touched my legs. But when I reached down to touch them, there was no pain. And they weren’t swollen at all. It’s just an illusion created by the stretched nerves.
Last night, though, this leaped into a whole new territory. I had been asleep for about an hour, when I was awakened suddenly by a feeling that felt like someone had injected acid into my right leg. Holy sh*t. I can’t describe the agony. And there’s nothing that could be done. My leg was on fire. Fortunately, from reading other people’s diaries, I had known this pain was coming before long and had already filled a prescription for Gabapentin so it would be ready when it happened. I took one, and in about half an hour, the pain had been almost completely reduced. I was amazed at how effective it was, and I felt noticeably better the entire day. Not sure if this nerve pain happened earlier to me than others, but I was expecting the nerve issues and numbing to come a bit later? So far, it's only on my right leg.
I know many people on here have used Gabapentin. Does it continue to be effective for the duration of lengthening, or does its effectiveness wear off? If I didn't have this in my system right now, I would be in absolute hell.
Quote from: Movie on April 18, 2020, 08:41:28 AMI myself sometimes would doubt what he would say to me too and then It'd end up to be true so . . . have hope and press on that thing every waking second lol.
Thanks Movie - yeah, I'm just following what he says. At my last appointment before the surgery he said, "I've done this many times. I know how to get you through it. If you just listen to what I say and follow my directions, you'll be fine". And I believe him. So I'm just trying to do that. Pushing on these bone pieces all day lol. Hope it's working
DAY 31
I realize that so far my diary has focused a lot on the negative sides of this process. I’ve been intent on making people aware of some of the more unpleasant aspects, just so they are fully prepared going into it. Reading about that stuff in other people’s diaries helped me prepare. So I’m trying to pass along my experience to others in case it helps them.
But I thought I’d take the time to point out some of the more positive aspects of my process so far.
1) Two days ago was exactly four weeks since my surgery. Wife and I measured again on the wall that day, and I had gained 1 1/8” or 2.86 cm. It’s amazing to see that inch on the wall. Proof that the pain so far has been for something.
2) I have started to notice the extra height, even when I’m not looking for it. I’ll be doing something and I’ll notice that things don’t seem quite right. And then I’ll realize that it’s because my perspective has shifted. When I stand at the kitchen counter eating cereal, I can tell that my head is noticeably farther away from the counter than it used to be. The spoon has to travel farther to reach my mouth. It’s just a little more than an inch, but it makes a difference. In my bathroom, I can see items on the top shelf better than I could before. And sometimes when I stand up after sitting for a while, the floor feels noticeably farther away that it used to. This is all with just an inch, so I imagine it will be much more noticeable with another inch or two.
3) In the last two days, I feel like I’ve really turned a corner. Far less pain in general, and my legs suddenly feel much stronger. I can get up out of almost all chairs in my house with no assistance - no walker or crutches. I couldn’t do that two days ago. These last two days I’ve been pretty much walking everywhere with no crutches or walker or cane. It seems scary on one hand to walk all the way across the living room with nothing to support me or catch me, but at the same time, my legs feel strong enough to do it, and it’s far faster and easier to do. Makes my wife nervous, because she doesn’t want me to fall. And sometimes I’ll grab a cane if my right leg is feeling a little off. But for the most part, I’m trying to just walk like I normally would. The kids think dad’s silly-looking walk is hilarious. We all laugh at it together. They understand it’s temporary 
4) The Gabapentin has been a game changer. I think it’s at least partially responsible for my ability to perform at a higher level these last couple of days. I’ve felt my mental state improving quite a bit as well, even though I’m still only getting 4.5 hours of sleep max at night. I’ve been off Norcos completely now for a couple of weeks. Saving them for when the pain level shoots back up later in the game. Still take Tylenol every six hours, and I’ve never had a higher respect for it. Discontinued edibles as I felt they weren't doing enough.
5) I can go up and down stairs now fairly well. Going down is easier than coming up right now. I've heard that changes eventually. I don’t do it often yet, as it’s pretty taxing. But I can do it. That helps a lot.
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