Quote from: MirinHeight on September 22, 2018, 06:53:23 AMwhen you say nerve damage, how severe are you talking
can you still walk with normal gait and run normal?
Well im only 1 month post frame removal and stop-lengthening so my gait sucks atm but i can walk unassisted. Yesterday i walked 3 miles till i started getting tired. The nerve damage was done to my peroneal nerve at the fibular head sometime during frame removal. Im not able to lift the foot up into dorsilflexion so im required to wear an AFO brace in order to walk or my foot just drags. I can move the foot to the sides and toes down just not up. Neurologist wants to give it 3-6 months to see if the nerve recovers if not then i will need a nerve decompression and hopefully that solves the problem.
Quadrilateral lengthening @ the Paley Institute - tibias 4cm + femurs 6cm
Quote from: OverrideYourGenetics on September 22, 2018, 06:01:47 AMHow slow do you think my recovery has been? Here's a timeline:
Your recovery is going great OYB considering you had all 4 bones broke. Great job!
Quote from: Jim_dabarber on September 23, 2018, 04:29:31 PMWell im only 1 month post frame removal and stop-lengthening so my gait sucks atm but i can walk unassisted. Yesterday i walked 3 miles till i started getting tired. The nerve damage was done to my peroneal nerve at the fibular head sometime during frame removal. Im not able to lift the foot up into dorsilflexion so im required to wear an AFO brace in order to walk or my foot just drags. I can move the foot to the sides and toes down just not up. Neurologist wants to give it 3-6 months to see if the nerve recovers if not then i will need a nerve decompression and hopefully that solves the problem.
Sorry to hear this. Paley's website says that foot drop is an emergency and needs immediate decompression. Maybe you should get a second opinion from another neurologist.
Also it is concerning that nerve damage happened during frame removal. You developed foot drop right after frame removal?
Quote from: OverrideYourGenetics on September 22, 2018, 06:01:47 AMHow slow do you think my recovery has been? Here's a timeline:
- 2018-Mar-15 - tibias surgery
- Apr 05 - femurs
- Jun 08 - stop lengthening
- Early Jul - walk with canes (unassisted). Never used crutches.
- Early Aug - walk unassisted
- Late Aug / early Sep - walk unassisted at f'in Burning Man
- Mid Sep - unassisted squats, going up and down stairs
I'm at ~3.5 months after stopping lengthening. I've done very minimal leg exercise (<30 minutes total per week (e.g. Stairmaster, stationary bike or walkstation). Of course, I've been walking around at home and at my sedentary job, but that's not any sort of specific rehab training. I haven't jogged yet. Not proud of how little work I've put into my recovery, but I guess I serve as a baseline - even if you just go about your day, you'll still recover. So have faith, my post-op crippled friends. 
I'm also in my late 30s and had all four segments broken.
For comparison, here's Puru, age 26, only femurs, and working out the legs much more often than me:
- 2017-Sep-26 - femurs surgery
- 2017-Dec-02 - stopped lengthening
- 2018-Jan-09 - mobile with crutches
- Jan-21 - walk without crutches
- Jan-30 - walk 1/3 miles (1/2km) without crutches ("swaying like hell towards the end as I was getting tired")
- Feb-08 - normal gait and going up/down stairs at only 2.25 months after stopping lengthening
- Feb-27 - jogging for 1 minute made legs sore
- Mar-03 - can't do body weight squats unassisted yet
- Mar-08 - walk for 3 miles without tiring
- Mar-25 - walk 6.5 miles/day, run up and down stairs easily. This was ~4 months after stopping lengthening.
- Mar-27 - can touch toes while bending with knees straight. Still can't squat unassisted.
- Aug-09 - can squat unassisted
- Aug-17 - jogged 2 miles, legs sore
Looks like Puru has recovered pretty much 100%, but let's see what he says.
He's also inspired me to try jogging next week!
Sorry for the late reply. I was traveling through Europe. I'm glad that you did this summary. I was thinking of doing it but wasn't sure if anyone wanted to know. Its really useful for comparison though. I'm super jealous that you went to Burning Man! Maybe next year for me!
Hey overrideyourgenetics
I read through your diary and you once mentioned that nail on of your legs had left almost no bone left on one side due to reaming. Did you ask the doctor about this?
And we would you hear about your recovery progress!
Thank you
Hello OverrideYourGenetics, I wanted to ask you how are you doing today, I plan to do the same process with the same doctor and I see in your video of the pool that you walk a little weird, with your knees in a bit can be?
I also see your legs very very thin, with hardly any muscle.
Is this because I was in wheelchair for about 4 months or were you like this before the process?
You run? Do you go down and climb stairs properly? How about squats on the floor (squatting)?
You lost range of knee flexion?
Quote from: cool on October 07, 2018, 06:00:32 AMI read through your diary and you once mentioned that nail on of your legs had left almost no bone left on one side due to reaming. Did you ask the doctor about this?
I've never said that
Yes, the upper end of my right femur looks very thin on X-rays. I don't know why. Dr. Paley said not to worry. Other bone doctors I've asked said the same. I haven't asked for a second opinion from another CLL surgeon yet though.
Quote from: Trevor.P on October 13, 2018, 04:39:26 PMI see in your video of the pool that you walk a little weird, with your knees in a bit can be?
I also see your legs very very thin, with hardly any muscle.
Is this because I was in wheelchair for about 4 months or were you like this before the process?
You run? Do you go down and climb stairs properly? How about squats on the floor (squatting)?
You lost range of knee flexion?
Not sure what "with your knees in a bit" means, but yes, I was walking a little weird. I still do, though less. Read below. I've started to re-gain leg muscle. Squats with heavy weight help, but I'm increasing the weight very gradually. I used to squat 5x5x275lbs before the surgery.
Here's an update on my blog - Seven months post CLL surgery.
Semi-formatted version below because this old forum doesn't support pasting formatted text.
Today marks 7 months since my last surgery, the insertion of the PRECICE rods in my femurs. Thought I'd give an update.
Timeline
It's been 4 months since I stopped using the wheelchair (about a month after I stopped lengthening), and about 3 months of walking unaided. I haven't exercised as much as I should - only 2-3 times a week.
Progress
* The swelling in my legs has been gone for over a month
* I can squat with weights, and with far less pain. I can front squat 10 sets of 10 reps with a 50 lbs kettlebell.
* I can climb stairs without problems, and go down stairs, but slower than usual.
* I can jog, but only for about 20 seconds
* I can run on Precor treadmills for ~5 minutes at setting "5" (I should look up what speed that actually is).
Limitations
* My right knee hurts when I get up from a squat (3-4/10). The pain hasn't diminished for the last month, and got a little worse after I've done a bunch more walking over the last week. The area right below the kneecap feels different on the right knee - there's a noticeable dent when I touch it. The very top of the tibia hurts as if I banged my knee into a piece of furniture. Dr. Paley had said that permanent knee pain is a rare complication post-CLL, but I might just have it 
* I can't run
* Perceptive people can tell I'm walking weird
How I feel
I see the world a bit differently. The difference in height is perceivable. I'm taller or about the same height as most women. I haven't tried any dating, so I don't know how that side of life would be impacted, but in general, at work and around random people at conferences, I feel more their equal. Being taller than women just feels good - it's as things are meant to be; or rather - being shorter than most women felt annoying and weird before the surgery.
It's funny that even though I know what it's like to be short, I can't help but feel somehow "superior" over shorter people at work (unless they're in a higher role than me, but I haven't actually met a manager shorter than me yet). So yes, the heightism bias turns out to be real in me, a rational software engineer, in one of the most "rational" of all places (Silicon Valley), who also used to be short!
When I meet a peer who's shorter, I have a tiny bit of trouble taking him seriously, unless I'm already impressed by his reputation. Seeing eye to eye with other men feels good. This may be a coincidence, or the result of having worked in my job for several years, but I've also just led a large project for the first time, and was assigned to lead another large one.
I was quite enthusiastic about that large project, and during a work trip to complete it, I was a lot more friendly to people. My attitude was picked up by Uber/Lyft drivers, who chatted me up more than usual (or maybe drivers in that city are more friendly?).
All in all, I can't say for sure it's the height, or other aspects of life that make me feel more confident, but I do feel better about myself now, even though I walk with a slight limp, and I might be left with permanent knee pain. Was it worth $200k? It depends on what $200k means to you. To me, it means paying back debts to the tune of $5k/month. From that perspective, it was not worth it - especially if the right knee pain doesn't go away after I take out the rods, or if I'm never able to run again.
Quote from: OverrideYourGenetics on November 16, 2018, 05:54:21 AMI've never said that
Yes, the upper end of my right femur looks very thin on X-rays. I don't know why. Dr. Paley said not to worry. Other bone doctors I've asked said the same. I haven't asked for a second opinion from another CLL surgeon yet though.
Not sure what "with your knees in a bit" means, but yes, I was walking a little weird. I still do, though less. Read below. I've started to re-gain leg muscle. Squats with heavy weight help, but I'm increasing the weight very gradually. I used to squat 5x5x275lbs before the surgery.
Here's an update on my blog - Seven months post CLL surgery.
Semi-formatted version below because this old forum doesn't support pasting formatted text.
Today marks 7 months since my last surgery, the insertion of the PRECICE rods in my femurs. Thought I'd give an update.
Timeline
It's been 4 months since I stopped using the wheelchair (about a month after I stopped lengthening), and about 3 months of walking unaided. I haven't exercised as much as I should - only 2-3 times a week.
Progress
* The swelling in my legs has been gone for over a month
* I can squat with weights, and with far less pain. I can front squat 10 sets of 10 reps with a 50 lbs kettlebell.
* I can climb stairs without problems, and go down stairs, but slower than usual.
* I can jog, but only for about 20 seconds
* I can run on Precor treadmills for ~5 minutes at setting "5" (I should look up what speed that actually is).
Limitations
* My right knee hurts when I get up from a squat (3-4/10). The pain hasn't diminished for the last month, and got a little worse after I've done a bunch more walking over the last week. The area right below the kneecap feels different on the right knee - there's a noticeable dent when I touch it. The very top of the tibia hurts as if I banged my knee into a piece of furniture. Dr. Paley had said that permanent knee pain is a rare complication post-CLL, but I might just have it
* I can't run
* Perceptive people can tell I'm walking weird
How I feel
I see the world a bit differently. The difference in height is perceivable. I'm taller or about the same height as most women. I haven't tried any dating, so I don't know how that side of life would be impacted, but in general, at work and around random people at conferences, I feel more their equal. Being taller than women just feels good - it's as things are meant to be; or rather - being shorter than most women felt annoying and weird before the surgery.
It's funny that even though I know what it's like to be short, I can't help but feel somehow "superior" over shorter people at work (unless they're in a higher role than me, but I haven't actually met a manager shorter than me yet). So yes, the heightism bias turns out to be real in me, a rational software engineer, in one of the most "rational" of all places (Silicon Valley), who also used to be short!
When I meet a peer who's shorter, I have a tiny bit of trouble taking him seriously, unless I'm already impressed by his reputation. Seeing eye to eye with other men feels good. This may be a coincidence, or the result of having worked in my job for several years, but I've also just led a large project for the first time, and was assigned to lead another large one.
I was quite enthusiastic about that large project, and during a work trip to complete it, I was a lot more friendly to people. My attitude was picked up by Uber/Lyft drivers, who chatted me up more than usual (or maybe drivers in that city are more friendly?).
All in all, I can't say for sure it's the height, or other aspects of life that make me feel more confident, but I do feel better about myself now, even though I walk with a slight limp, and I might be left with permanent knee pain. Was it worth $200k? It depends on what $200k means to you. To me, it means paying back debts to the tune of $5k/month. From that perspective, it was not worth it - especially if the right knee pain doesn't go away after I take out the rods, or if I'm never able to run again.
Nice to hear from you man! thank you for the update and I am happy to see you are overall doing very good!
has your gait a lot improved since last video? on a scale of 1-100% where do you think your gait is?
Im sorry to see that you are having trouble with knee pain. I hope this is not related to internal tibia reaming and hope you can recover fully as soon as possible
Thank you for your time,
Mirin
@OYG
Thank you very much for still bothering to post updates here. Thank you for the honest opinions, too. They're hard to come to by.
I hope the knee pain will go away in due time. It took 2 years for some CLLers to feel like their legs had "stabilized", and they weren't feeling any changes anymore.
All the best.
Thanks for the reply OverrideYourGenetics
I really would fail the keyboard and I did not want to put in that moment ...
I will watch your progress.
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