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[ab608]

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

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.

[SquishyCat]

Thanks for this amazing post！ I’m also moving to Baltimore next month. May I ask your age?

[ab608]

Thanks 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

[SirStretchAlot]

Hey 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.

[ab608]

Thanks, 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.

[ab608]

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.

[PerfectBody]

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.

[ab608]

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.

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.

[ab608]

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

[L8GrowthSpurt]

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!)

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

Wow! Time flies, eh? I’m sure it hasn’t for you since you’re doing all the work! 😁. Happy that the lengthening is almost done and also hoping everything goes smoothly for you as you wrap up the distraction phase. Best wishes!

[ab608]

Wow! Time flies, eh? I’m sure it hasn’t for you since you’re doing all the work! 😁. Happy that the lengthening is almost done and also hoping everything goes smoothly for you as you wrap up the distraction phase. Best wishes!

Thanks! Will post x-rays after my next appt in a few days.

[ab608]

All done! Now in consolidation - should be 4-6 weeks for partial weight-bearing, and then another 4-6 weeks from there to walking without any assistance.

I hit 7.5cm a few days ago -- I think on Thursday (98 days since surgery) -- and since then, I've just been adjusting my right leg to get it to the same length as my left. It's been three days since Thursday and I think both legs look pretty even now, and I feel much more even when standing up on my walker now. I think I'm going to call it and just closely monitor how my legs look over the next week. The doctor said that if I still want to lengthen / shorten in a week's time, I'll be able to, since the bones won't have consolidated that much.

I'm feeling really happy - overall the journey was pretty smooth. The only big hiccup was that the first month of lengthening was pretty painful on my left leg, but that's because I was accidentally lengthening it too much. If you're using a NuVasive product and the second gen of the ERC, beyond making sure you keep your legs a good distance apart while lengthening, keep monitoring your leg lengths, especially if you're small like me. A lot of times my X-ray measurements didn't line up with how much I thought I had lengthened, and I have a theory that it's an ERC issue, because even after catching the issue of one leg being longer than the other and making sure I was keeping my legs far apart during lengthening, sometimes I could feel my other leg lengthening (basically I'd feel the motor in motion) while having the ERC on the other leg. I know the magnet is really strong, so despite keeping the legs apart, I still felt like the ERC would sometimes lengthen the other leg unintentionally. It's an unproven theory but seems likely to me.

Also, if you ever have to lengthen more on one leg for some reason (like correcting an imbalance), its good to keep a separate journal where you keep track of how many lengthening sessions you did per day + per leg and what you think the overall lengthening amount is so far, because the ERC doesn't allow you to skip sessions on one leg. So if you only lengthen one leg in a session, it'll still keep the counter going for the other leg, making it look like you lengthened both when you only did one. Also, keep in mind that the X-ray measurements have some margin of error, so always good to have some way of comparing how much length you think you got vs what the x-ray says you got. Just keep my experience in mind - if one leg is finding lengthening a lot more painful than the other, ask your doctor if he/she thinks this is what's going on. The act of lengthening using the ERC should not be painful, so definitely speak up if you're finding it very painful.

Now the game plan is to work really hard on both stretching everything out and strengthening my core, glutes, quads, and whatever else i can do. I still have the anterior pelvic tilt and my quads and glutes are pretty weak, so I'm really eager for any non weightbearing strengthening exercises for someone who did femurs. If you have any, please share! I'm thinking of using the leg press for quads, glute bridges for glutes, a lot of different core exercises, a lot of the exercise bike, squats in the pool, and all that kind of stuff. I'd love to make the transition to walking a little smoother by really working hard this month, although I don't know if that's a pipe dream. I know there's a lot of great diaries of past LL'ers who are walking now, so going to take some time to look through those for tips.

Not the best quality (my phone camera sucks) but here are the x-rays:

https://imgur.com/a/3hghmgd

[ShaneIrish]

[GodsGrace]

Congratz on your 7.5 cm achievement. I am really happy for your gain. Keep us posted on how your recovery is coming along?

[ab608]

Thank you! I will definitely update.

Right now I'm focusing on strengthening and stretching. Despite having really good ROM when stretching on my bed, when I stand on my walker, I'm finding that my left leg feels really tight, while my right leg feels loose and flexible. This makes me feel weird when I stand; I feel kind of lopsided. So I think I need to put more time into stretching out my left leg more -- especially the upper part of my hamstrings. I also feel weird when I stand with my legs together -- it makes my back arch more -- so I have to work on stretching those adductor muscles as well.

In general, I've been making an effort to put more weight on both legs. I barely stood on my walker during lengthening, so I'm trying to do that more now to get them used to having weight on them (obviously taking care not to exceed 50 lbs on each leg). Will share links to exercises I'm doing soon, in case it's helpful!

[ab608]

Update - almost 2 weeks into consolidation

I was pretty flexible and maintained really good ROM throughout lengthening, so regaining flexibility hasn't been a huge focus for me for consolidation, but its still really important nevertheless. I do feel tightness/stiffness when I don't stretch regularly, even though I still have good ROM. I've been trying to strengthen more, but have been finding that tough. The act of putting more weight on my legs and forcing my muscles to work causes pain afterwards, and I have to be careful to not overdo it and space out the strengthening. Standing feels really weird too - my left leg feels super tight when I stand up with my walker, which is weird because its very flexible when I stretch it on my bed. My PT says it might be because the weight is causing my muscles to wake up and stay in a contracted position - basically the muscles are still getting used to holding weight and are going to feel weird at first.

My PT and I also discovered why I feel so "off" and uneven when I stand. Prior to surgery, my knees would naturally hyperextend, which is common for women. Now, after lengthening, my right knee has retained that ability to hyperextend when standing, but my left knee doesn't. This lines up with what I felt in lengthening - towards the end, my left knee began to feel stiffer than the right. This could be because my left quad is weaker than my right quad, and the quad allows for hyperextension of the knee (or something like that). Hoping that both knees ultimately end up the same way so that I can feel even when I stand.

I now take my pain meds on an as-needed basis. The first week of consolidation, I barely needed pain meds, but this week I took them a couple times to deal with post-workout pain. My legs have been achy and annoying so I've been taking the the meds for that.

My hip flexors are still really tight, so my lower back is still very arched. Trying my best to lie in prone position, stand more, do different hip flexor stretches, but they're still really tight and my back is really weak. It makes sleeping and working tough because my back is so arched, etc. But trying to stay positive and keep stretching it!

To be honest I'm a bit nervous about what it's going to be like to start walking again. I think it's going to take a while for my legs to adjust to holding my weight and to get rid of the pelvic tilt. Oh well I guess, best not to think too much about that and just keep stretching and strengthening

[LongLegs]

Hi there, congratulations on all your progress to date in your LL journey! It sounds like everything you have been doing and your positive attitude have gotten you this far and you are doing great. I am near the end of my first month post LL surgery, and because Covid/Delta is rampant in my area, am now planning to do PT on my own for a while. I am also Precice 2.2 and going for 7.5-8 cm. Really looking forward to seeing what exercises and stretches you have been doing to date. I am mainly getting mine from YouTube at the moment. Anyway, good luck with consolidation and before you know it you will be walking tall and unaided again!

[ab608]

Hey! Congrats on starting the process - excited for you!

Here are the stretches I've done throughout this process (on the stretches tab): https://docs.google.com/spreadsheets/d/1y9FBpearMEqThe0luRJ4yZKk1eGEi6wVVWGgdbb8k6o/edit#gid=1128726750

I'll update it with strengthening exercises later today.

A stretching strap and resistance band would be really useful to have. Also highly recommend getting a massage table if you have the space for it (unless your bed is pretty high off the ground) because it really helps with stretching your hip flexors. My hip flexors are really tight right now and I wish I had gotten a massage table earlier since the added height makes the stretches like the Taylor stretch a lot more effective, in my opinion.

[LongLegs]

Many thanks ab608, these are super useful! And thank you in advance for the strengthening exercises. Great, I will get a stretching strap and resistance band. Is the latter a looped/closed band? I probably don't have enough room for a massage table unfortunately. Yes, same here with hip flexors.

[ab608]

Had my x-rays yesterday and somehow i'm miraculously 100% weightbearing now?!

x-rays: https://imgur.com/a/fvOx1Z6

Dr A says i have 3/4 cortices bone growth on one leg, a little less than 3 on the other which is a pretty good sign. If I remember correctly, I could start walking, but they still want me to walk with assistance for the next month since muscles are weak and the regenerate is pretty weak.

It's been exactly 4 months since surgery and a little less than a month since I finished lengthening, so this was really unexpected but welcome news - I thought it'd be at least another month till I was full-weightbearing. But definitely still have to take it slow and be very careful.

I got out of the wheelchair for the first time yesterday and tried walking with both a walker and crutches - apart from a bit of stiffness in my left leg and stress on the front of my foot, it honestly felt pretty normal. But my legs are definitely not used to holding my weight anymore, I feel my weight so acutely now, so a lot of strengthening is necessary. Will update more with exercises and videos soon!

[mailer2]

Congratulations, ab608! Can't wait for your updates. How's your pain? Are you still taking painkillers after your workout? I hope your sleep quality has improved also! 

[ab608]

Congratulations, ab608! Can't wait for your updates. How's your pain? Are you still taking painkillers after your workout? I hope your sleep quality has improved also! 

Thanks! Pain is fine most of the time but yeah, over the last week I've still been needing them after workouts. I typically take 1-2 tylenols. Sleep quality has also improved! My PT let me borrow his massage table to stretch my hip flexors from a taller height and it's truly been a miracle. My hip flexors are so much looser and my back is less arched, so I'm able to sleep better now!

Here are some videos of me walking with and without walker (i know i'm not supposed to, so i *rarely* walk without it, but my legs have gotten stronger so i felt comfortable taking a few steps): https://imgur.com/a/gEUqoSm

There's also a video of me going from sitting to standing from a pretty high seat height - that was taken a few days ago. Today I found out I'm now actually able to stand up from a lower seat height (my desk chair) but I practiced it so much that by the time I started taking these videos, my quads were literally fried and I couldn't do it for the video. But i hope to post it later!

Walking feels extremely weird - my left leg especially is as stiff as a board. literally feel like i have a wooden leg. and walking gets harder the more i work out obviously, because the weight training makes everything stiffer. but i really think the leg press, squats, resistance bike, etc is helping my quads get stronger. its hard for me to stand for more than 3-4 minutes at the moment because of how stiff and uncomfortable everything feels, and i can't really walk that much, even with the walker.. maybe like 5 mins max as well. but i'm sure with practice the stamina will improve.

Not sure if it's as apparent in the videos, but yesterday my PT noticed that when I walk, my right leg swings in a lot, towards my midline. He thinks its because my outer thigh muscles are weak and my inner thigh muscles overpower them and pull the leg in a lot, so he told me to strengthen the outer thigh muscles as well. So to work them out, I've been youtubing "outer thigh workout" and doing one of the 8 minute videos twice a day - hoping that improves things!

Beyond strengthening my legs, my routine is pretty much the same as it has always been. I take Vitamin D (5000 units) and Calcium (1500 mg) everyday and eat a lot. At my last appt when I got my X-rays, I found out I gained 6 lbs since surgery, so I wonder if diet/caloric intake played a really big role in the rate of my bone growth.

[Growing]

wow your proportions look great/ And your walking is not bad at all for being only 3 months post op. You're well on your way. Also your scars are non-existent. I have dark skin so hopefully mines are not noticeable.

[L8GrowthSpurt]

Congrats ab608! Your walking looks great!…esp for the limited time since your surgery.  So happy for you. 😊

[ab608]

Thank you both!! @Growing so my phone camera is very forgiving - I do have noticeable scars, and they're not very pretty. but at the moment I'm not too concerned about it - that's a later problem haha. i think i'll start taking care of them after removal because i think they do the incisions in the same places?

[JimmyJW]

Your proportions look great! Thank you for the thread.

[ActionSpeaks]

Your walking looks great! Congratulations on doing so well and on making it this far. Almost there!

[SpeedDialer]

Thanks for making this diary, ab608!

What would be your advice if you wanted to do nail removal w/ Assayag using insurance? I'm within driving of Assayag but my state doesn't have PPO insurance in the individual market, I'm not sure what to do or if there is any insurance I can pick

[ab608]

Thanks for making this diary, ab608!

What would be your advice if you wanted to do nail removal w/ Assayag using insurance? I'm within driving of Assayag but my state doesn't have PPO insurance in the individual market, I'm not sure what to do or if there is any insurance I can pick

Hm, I don't know a lot about buying insurance as an individual, so I'm probably not the best for advice on this. I guess if PPOs aren't an option, I'd probably check to see if the plans that are offered in your state consider Dr Assayag an in-network doctor? I'm assuming that just because he's out of state for you, that doesn't mean a plan will definitely consider him out of network, but I could be wrong.

[SpeedDialer]

Yeah hm... What will you use for nail removal? Pay Assayag out of pocket?

I'm debating whether I can became a part time online student in a cheap university not too far away from assayag https://shs.gmu.edu/insurance/ - > Then I would try to get on their school PPO healthcare plan, I was going to a class somewhere anyway

They have a Aetna ACA compliant PPO

But how do we find out the codes / numbers to verify with Dr. Assayag and insurance that nail removal would be covered? What kind of code or number would we need to give to the insurance to verify beforehand?

I am trying to avoid going to India because I'm afraid of the covid variants but before I was thinking Parihar for nail removal, not sure how much that costs

[ab608]

Yeah hm... What will you use for nail removal? Pay Assayag out of pocket?

I'm debating whether I can became a part time online student in a cheap university not too far away from assayag https://shs.gmu.edu/insurance/ - > Then I would try to get on their school PPO healthcare plan, I was going to a class somewhere anyway

They have a Aetna ACA compliant PPO

But how do we find out the codes / numbers to verify with Dr. Assayag and insurance that nail removal would be covered? What kind of code or number would we need to give to the insurance to verify beforehand?

I am trying to avoid going to India because I'm afraid of the covid variants but before I was thinking Parihar for nail removal, not sure how much that costs

He's in-network in my insurance, I have Aetna. I should still doublecheck whether removal will be covered though, I have to do that. You can email him or another American surgeon and ask him what CPT and/or ICD codes he has to bill nail removal under