Thank you @LBGrowthSpurt and @Serilium!
Also, @Serilium, I got some intel re: your question about Gaba from the doctor - he said "Gaba is used not only for nerve pain, but also as an adjunct for somatic pain. It works with the Tylenol and Celebrex (which are the first line pain meds prescribed post surgery) to potentialize their effect".
Hope that helps
Is Precice 2.2 already available in the US or is Assayag using stock?
@V21 it's available in the US
Quote from: ab96 on May 09, 2021, 03:23:14 AM
Also, @Serilium, I got some intel re: your question about Gaba from the doctor - he said "Gaba is used not only for nerve pain, but also as an adjunct for somatic pain. It works with the Tylenol and Celebrex (which are the first line pain meds prescribed post surgery) to potentialize their effect".
Hope that helps
Tnx
Hey ab608 - how ya doing? Hope things are going well for you! 😁💪
Quote from: L8GrowthSpurt on May 16, 2021, 01:59:58 AMHey ab608 - how ya doing? Hope things are going well for you! 😁💪
Hey! Thanks for checking in. The last week or so has been interesting, but overall things are going really well!
For some context on where I am in distraction, I'm 38 days post surgery as of today and I've distracted around 2.9 cm. I have another follow-up with the doctor this week where we'll get to look at the X-rays again.
I've been doing really well with bone growth, so I hope that trend continues. I definitely feel like all my surgery-related pain is gone (long gone). Mentally I feel 100% back to normal - I've started working again as well (I work remotely). I've had good and bad days with work, but again, on the whole I think it's getting easier. My team is really kind and accommodating as well, so that has helped. My sleep quality was pretty bad these last two weeks, so I had been taking a lot of naps in between meetings and doing work over the weekend to compensate, but over the past few days I've been sleeping better, so I don't think I'll need to nap as much during the day this coming week.
Regarding pain and muscle tightness, we had an interesting revelation earlier this week that shed some light on my pain - turns out I've been accidentally lengthening my left leg more and faster than my right leg -__________- lol..which may be why I've found distraction so painful on that leg. We found this out because, in addition the low-grade distraction pain I was still having, I also had a lot of tightness on the side of my left thigh (the IT band area) and pain on the sides of my left knee. When I stood up on my walker, I could see that my left knee was rotating inwards making my left leg look kind of crooked/not straight. My PT told me to text Dr A right away, so I did, and he told me to come in ASAP because he suspected subluxation of the knee (which I think is kind of like dislocation? not totally sure). I also noticed that my left leg looked kind of longer than the right - it was subtle but I definitely thought I could see a difference and Dr A agreed, so he took some X-rays. The X-rays didn't show any subluxation but did show that the left leg was longer than the right by a couple millimeters. He said one reason for the knee curving inward could be because of the tightness in my IT band + other muscles on the left leg, since it's the hip that controls rotation of the knee. That made sense to me because I felt like my knee was curving inward to avoid the pain that was brought on by the tightness on the side of my thigh when I'd rotate my hip to straighten my leg. He told me to slow down lengthening on my left leg to .5 mm per day and to keep going at 1mm on the right to let the right leg catch up. So, I've slowed down on the left at least until my upcoming appt at the end of this week.
The slowdown has been really nice - the muscle tightness lifted pretty much the next day and I've found it a lot easier to keep my knee straight. I've also felt much less pain on the left leg since slowing down, so its nice to get a little break 
I'm really curious about how much, if any, pain I'll feel once I return to 1mm distraction per day on the left, once the right has caught up.
As to how I could've lengthened more on the left than right -- the magnet in the NuVasive ERC (remote that does the lengthening) is really powerful, and the device says to keep both legs at least a foot apart before lengthening. I guess I must've been careless a few times. The device makes me lengthen my right leg first, and then left, so its possible that I kept my left leg too close while lengthening the right, causing the remote to also lengthen my left leg with it 
so be careful all of you!! don't be like me lol. hopefully my experience will help you troubleshoot if any of you have similar pain or are noticing similar symptoms when you start this process.
As always I'm super grateful for my PT, and the doctor and his team for being super responsive and calling me in to investigate ASAP. On the bright side, PT has been going really well, I don't have any other unexpected areas of muscle tightness, and I also got to try walking in the pool this week! It felt great to stand and practice walking, especially since you can't weight bear on Precice 2.2.
Will write up more on this tomorrow - in the meantime, feel free to ask about anything I haven't mentioned if you're curious.
Update:
42 days post-surgery
Distracted 3.4 cm on right leg, a little bit more than that on left leg (see post above ^)
Pain level generally: for the last week and half, it's been in the 1-2 range generally since I slowed down distraction on my left leg. My right leg doesn't hurt when distracting, but both legs do ache from time to time. The worst that the aching gets is 3-4 level pain, which happens at night usually.
Muscle tightness/flexibility: I'm still doing ok in terms of flexibility. Hamstrings are still ok which is good; I don't have much trouble straightening my legs. My quads are getting a little tighter but I'm still able to bend 90+ degrees. My hips are fine too. My main issue is tightness in the IT bands on both legs and knee pain (side of the knee especially). I could really feel that tightness when standing up in the pool, so I need to spend more time stretching the IT bands.
Video of me walking in the pool: https://imgur.com/MlYEEAb
Highly recommend getting in the pool asap if you're doing Precice since it helps you practice your walk. It also made me acutely aware of which of my muscles were really tight, since its hard to tell that when you're sitting/reclining/lying down 24/7. As soon as I started walking, I could really feel tightness on the sides of both of my knees, which I don't feel as acutely when sitting/lying down. I definitely felt that the tightness was hampering my walk. I told my PT that I tend to sleep on my side and bend my knees at night; she said that this was probably contributing to my knee tightness and that I should try to either sleep with my knees straight using the CKDs they gave us, or to compensate by trying hard to keep my legs straight during the daytime. This brings me to my CKD usage...
CKD usage - Not sure how widespread this is, but the LL team at Sinai Hospital makes their femur lengthening patients custom leg braces which are to be worn up to 8 hours per day to help with keeping your legs straight and prevent your hamstrings from getting too tight (they'll naturally get tight due to lengthening, but I think the brace helps to mitigate it). I've been trying really hard to keep both CKDS on at night but man it's so tough. I try to wait till I'm really sleepy to put them on, but as soon as I put them on, my sleepiness evaporates because its so uncomfortable lol. Nevertheless I keep trying, and right now the most I can keep them on is 1hr 15 mins before my legs are screaming at me to take them off. I definitely am not at the point where I can sleep with them. At the moment I wear them throughout the day in intervals, as much as I can. Hopefully I'll get better at this! If you're a former Sinai patient and have any tips on this, please let me know!
Quote from: MrSoonToBeTaller on May 22, 2021, 03:53:48 PMHello fellow femur lengthener! I am about a month behind you; my surgery was May 6. Any tips? I am also a Precice 2.2 femur patient. Any hints or tips for sleeping? The pool video looks cool!
hi! congrats on starting your journey! honestly sleeping has been up and down for me and i'm still trying to nail it as well..the first few weeks after surgery i actually slept really well, despite only being able to sleep on my back, i think because i was new to all the medication and it made me pretty drowsy (especially the Oxy, which I'd take at night). but since then my sleep quality has been pretty spotty, with some good nights and sometimes a string of bad nights.
a couple things which have helped me:
1) being able to lie on my stomach - i was able to do this by week 2/3 and it was a real game-changer for sleep for me. around week 4-5 i also felt comfortable sleeping on my side, but i'm trying to wean myself off of this now because i tend to curl up on my side and that makes my knees really tight and painful in the morning.
2) taking reliable pain meds before sleeping to minimize waking up in pain at night. when distraction was pretty painful, i'd definitely take Oxy before sleeping. idk what your post-surgery meds are, but if you've been prescribed Tylenol, maybe you could try taking Tylenol PM? it didn't really work for me but i feel like that was because i was in a phase where my pain was a little too strong to be overpowered by Tylenol PM. now that the pain is in check, i might try that again. Victor from Cyborg4Life also has a video about sleep where I think he mentions some amino acid supplement that helped him with sleep; i haven't tried it, but maybe its something you could look into:
if i come across anything else that helps, i'll let you know!
Thanks for writing your diary.
I was wondering how much were the costs of surgery and physical therapy?
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