Quote from: ab608 on June 10, 2021, 01:20:11 PMHaha, initially I was terrified too.. a week or so after surgery, my brother had to practically force me to get off the bed and practice transferring and start moving around/doing things. Once you get your transfers down, its really a piece of cake. What really helped me is getting a wheelchair where you can remove the armrests, which I think most wheelchairs do these days anyway. That makes it really easy to slide off and on things from the side of the wheelchair. All you have to do is use your arms and legs to push and slide off. I thought it'd take a lot of arm strength, but I have really weak arms and I can do it lol, so its really not too bad. I'm never really worried about breaking the nail. Before surgery, get your own wheelchair from Craigslist or something and practice all of your transfers wherever you'll be staying.
I'll put some links to Youtube vids I used to practice transferring, along with links of things I've used throughout the process, in a later post if that helps!
hahaha yeah, I'm already at home practising transfers, going to bed from my office chair. I have even weighed how much weight I put and its like only 10 kg. Besides, I think the weight goes in the calves during the transfer, and not on femurs (I keep a "seated" position". Thank you very much for your answers, I do am terrified of bending the nail. I even lost 10 kg to be as light as possible lol
Precice 2.2 Diary - Baltimore w/ Dr Assayag (April 2021)
Quote from: V21 on June 10, 2021, 02:52:18 PMhahaha yeah, I'm already at home practising transfers, going to bed from my office chair. I have even weighed how much weight I put and its like only 10 kg. Besides, I think the weight goes in the calves during the transfer, and not on femurs (I keep a "seated" position". Thank you very much for your answers, I do am terrified of bending the nail. I even lost 10 kg to be as light as possible lol
Of course! Although, just remember that in the beginning, transferring is a bit difficult because your quads have lost a lot of their strength, so its hard to bend them, hang them off the edge of the bed/chair/etc. I got around this by doing a lot of scooting, so i'd scoot back into the wheelchair. It was tough though - once i regained quad strength (took around 2 weeks), life got a lot easier. My advice would be to work really hard on quad strength immediately and consistently after surgery.
Thanks for this amazing post！ I’m also moving to Baltimore next month. May I ask your age?
Quote from: SquishyCat on June 18, 2021, 06:49:43 PMThanks for this amazing post！ I’m also moving to Baltimore next month. May I ask your age?
That's great! Are you also getting it done at Sinai? Feel free to PM if you have any specific questions. I'm 24
Quote from: ab608 on May 04, 2021, 03:40:42 PMHey TheDream - that's a good question. I'm not totally sure why we chose to shoot for 1mm/day, but I suspect the reasoning behind it is that that's the theorized rate of bone growth per day based on research, so the 1mm lengthening rate early on might be necessary to avoid the risk of pre-consolidation. Dr A said I could do .75mm per day if I really wanted, but I really wanted to try for 1mm. I could be totally wrong about this though, this is just my guess
The 1mm/day actually comes from the rate of nerve growth. If you distract significantly faster than this, there is potential for nerve damage.
Your bones actually consolidate at 0.25mm per day, hence why there's a "consolidation" period after distraction for the bone growth to catch up. Unless you're a fast bone grower, 0.5mm per day is usually a safe distraction rate.
Quote from: Want-3-inches on June 10, 2021, 02:42:47 PMThanks, this would be very helpful!
Here's a list of things I've used throughout this process, things I haven't used but would prob be useful, how I do my transfers, things I planned for before the surgery -- its an anonymous spreadsheet so please feel free to view:
https://docs.google.com/spreadsheets/d/1y9FBpearMEqThe0luRJ4yZKk1eGEi6wVVWGgdbb8k6o/edit#gid=1160145484
It's a work in progress, so feel free to let me know about things I didn't mention if you remember. I'll keep updating it as I think of more things.
Update - 59.5 right leg, 55.5 left
Last week I was feeling a lot of weird sensations in my legs, like prickling on the soles of my feet, toes, sometimes burning in my toes, and this sensation of tickling/feeling like a bug was crawling on my foot, shin, thighs, etc. The sensations were pretty frequent, like every 1-2 mins and sometimes less than that. I also felt this funny feeling for prolonged periods of time on my shins/lower leg as if it was on the verge of falling asleep, but didn't quite get to the pins + needles stage. This was irritating at night and made it hard to sleep. I let Dr A know, and was told to retract 1mm on both legs and take a break from lengthening for a day. I asked to not lengthen the day after either because the sensations ramped up that day. After those two days, the frequency of the sensations went down by a lot, so we decided to resume lengthening at the rate of .5mm till the next appt which was that Friday.
Luckily none of those sensations intensified into numbness or muscle weakness, because everything seemed fine when when we examined my feet at the appt. I could wiggle my toes, push and pull with my big toe, could feel touch in diff areas, so feeling relieved about that 
I was told that I could go back to lengthening both legs at .75, but I was still feeling the weird sensations here and there so I asked to stay at .5mm for a few more days until I felt like everything was okay, which was fine by the doctor, I guess because there's very little risk of premature consolidation at this stage of the game. My left shin isn't completely numb, but it does feel like it's not 100%. However I guess the amount of feeling I've lost is extremely minor because I could still feel touch in different areas of my shin during the exam at my appt.
As of now, things are feeling a lot better so I'm now distracting .75 on both legs, and hoping that everything will be okay! I still felt that annoying feeling of my leg being on the verge of falling asleep last night, so I decided to wear compression socks to see if it'd help / maybe its a circulation issue. I think they actually ended up helping - not totally sure, so will keep trying them out
At my last appt, my the regenerate on my right leg was not as dense on one of the sides, which prompted us to slow down. Thankfully at this appt, it was looking a lot better. Apparently its still not as dense as the regenerate on the left, but not to the point where its concerning.
In terms of PT, everything is still the same. I do all the same exercises as when I first started lengthening. I go to the pool a lot more now and I use the exercise bike more too now, to help break up the routine. I've gotten a lot of flexibility back because of the lengthening break I took last week + slowing down to .5, so I'm actually feeling really really good, but it's bittersweet because that break cost me some time. But I guess that's par for the course, and I'm happy to have a bit more peace of mind re: the weird nerve sensations.
Sounds like you experienced a bit of nerve pain! Glad to see you found a work-around, it's not fun.
I got a lot of that at the very beginning. It died down for two weeks but now if I rub my legs I can feel them sparking/firing up again 🙃 I might take one from your book and not lengthen tonight, it's very unpleasant lol.
Quote from: PerfectBody on June 22, 2021, 06:33:36 PMSounds like you experienced a bit of nerve pain! Glad to see you found a work-around, it's not fun.
I got a lot of that at the very beginning. It died down for two weeks but now if I rub my legs I can feel them sparking/firing up again 🙃 I might take one from your book and not lengthen tonight, it's very unpleasant lol.
that sounds rough - i hope a day off helps! nerve irritation is weird - i don't have a good sense of how much you can wait/push it with lengthening before risking something serious. it's never fun to slow down, but at least it gives you peace of mind.
Update - we're at ~6.8 on the left and ~7.0 on the right leg now. 91 days post surgery!
New (and hopefully final) lengthening goal - 7.5cm (we're almost there!)
I'm currently distracting 0.75 daily (although a couple weeks ago, I found it better to alternate distracting between 0.75 and 0.5 to keep the weird nerve sensations at bay). So far things have been fine, although I do feel more pain now on a daily basis than compared to before. I'll feel random painful sensations throughout the day that don't really last more than a few seconds, and maybe go up to 2-3 on the pain scale. I don't feel as stiff anymore since I'm distracting at a slower rate. I think my stiffness was at its worst when I was doing 1mm per day.
My muscles have gotten tighter, but they still have pretty good ROM (slowing down really helped with this since i regained rom). The only thing that's gotten pretty bad in the last 2 weeks is my hip flexors. My PT says I have lordosis - not severe but its definitely there. When I lie down there's a pretty big gap between my lower back and the bed, and when I stand in the pool, my back hurts a lot and is curved inward. My back hurts even when not standing - I find it uncomfortable to sit without something supporting my lower back and it takes conscious effort to not slouch a lot. Obviously everyone slouches a bit, but i feel like my slouch has gotten worse. The solution is to lie on my stomach more and do more hip stretches, so I'm trying to do that as much as I can. I've learned to put a pillow under my hips when I lie on my stomach to align my back and correct the lordosis that's happening so that I can give my hip flexors a proper stretch.
Another thing I've noticed is clicking in my right leg. Sometimes when I move my leg, especially from the hip, I feel a clicking sensation. At one point I could even hear tiny popping sounds every time i moved my leg. I also can sometimes feel the clicking when I'm distracting, so I feel like it must be related to the nail. I got some last minute x-rays because I was worried about this, and the x-rays didn't show any bend in the nail or any issues with the hardware, so we're not sure what's going on. I'm happy that there's no issue with the nail because I feel like at this stage, with the rod extended at 7cm, it'd be easy to bend it if I inadvertently put too much weight on it. I walk in the pool a lot and sometimes try out exercises in 3.5ft, so I was worried that doing that may have put stress on the nail. I really don't want to take risks with it so I think I'll just stay in 4ft from now on. Let me know if you've ever experienced any clicking with Stryde/Precice! I hear its common so I'm not too worried, but its definitely made me more cautious at this point.
In terms of self-stretching, lately i've been going to the pool and using the exercise bike a lot (on top of just normal stretching). It really helps me feel better and maintain flexibility. The priority at this point is getting to 7.5cm as safely as possible and evening out my legs. I got a standing x-ray at my last appt to check out the overall difference in my leg lengths, and we found that the difference between the two has gotten smaller. This was surprising to me because they still visually appear like different lengths (its subtle but there imo), and I also feel uncomfortable when standing, like I can feel that my left leg is longer than my right. Its possible that how I feel doesn't match with the x-rays because of the accuracy/margin of error of the measurement software/etc, i have bad posture at the moment because of the lordosis, also maybe there's some sort of placebo effect going on because now I know that my legs are different lengths and I'm more inclined to feel that there's a difference now that I'm aware. Since all of this stuff is in play, the plan is to just get both legs 7.5 cm and then finetune - so lengthen/shorten each leg as needed until I feel even when standing and there's no visual difference in the legs.
It has been a *minute* since I first started this process, so it's really crazy to be wrapping up lengthening. Crossing my fingers that I can get to 7.5 by my next appt next week and that everything goes smoothly
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