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[SpeedDialer]

What are your thoughts for some example things to think about when deciding when to stop lengthening?

It seems like some people can reach 8 cm. But other people decide "eh time to stop now"

What usually ends up being the major factor in "eh time to stop now"? Like is there an exponential increase in pain at some point that gets people to stop or other reasons?

Excluding things like "fk it I just want to go home"

[StrydeNailChallenge]

Hi SNC, approx how long post op were you fit enough to climb stairs?

Hi fivetenneeded2016,

You hit on a very important practice item; I believe.  Stair climbing would be very helpful to a fast recovery.

Although the first time I climbed a couple stairs must be very early during the distraction phase (e.g., taking the couple stairs at the entrance door at my place, and also any stairs I could find outside), I took my first long set of stairs (of 16 stairs) on Day 88 (Sunday Oct. 18) which is also the Consolidation Day 7, i.e., 7 days after the last day of distraction). My speed and gait were however not normal yet on that day. However that quickly improved. I however am not yet back to "normal" in stair climbing, if you define "normal" as skipping a few stairs, or going up and down with almost a running speed. 

I would day I have been late in stair climbing, compared to some other CLL'ers. The main reason is that my place does not have a second story. I just have a couple stairs in front of the entrance door. Those CLL'ers who live on top floors, have the advantage the use the stairs from early distraction days (of course with approval from the CLL doctor; and PTs, if any). Since I did not have the option, I tried to use any stairs outdoor and also the park nearby which has a lot of uphill and downhill places to strengthen my legs.

I highly recommend to every CLL'er to first double check with their doctor and with his/her approval, include stair climbing frequently on a daily basis.

[StrydeNailChallenge]

What are your thoughts for some example things to think about when deciding when to stop lengthening?

It seems like some people can reach 8 cm. But other people decide "eh time to stop now"

What usually ends up being the major factor in "eh time to stop now"? Like is there an exponential increase in pain at some point that gets people to stop or other reasons?

Excluding things like "fk it I just want to go home"

Hi SpeedDialer,

This is what I think. A typical CLL'er must have a lot of trust in his or her doctor and that's why they chose that certain doctor to proceed. It is therefore very important to listen to them and stop if they recommend that.

That being said, the doctors obviously also listens to the CLL'er and if the CLL'er gives them a feeling that things (in terms of pain) are too severe, they may get convinced to recommend an early stop. I therefore think the CLL'ers themsevles ultimately influence the stopping time by a great extent.

I personally think if my x-rays look normal with no signs of issues or complications, I go all the way to end, given I have set up a pain management plan using painkillers, etc. This is because the CLL process is too tough and costly, a challenge to give up early. We the CLL'ers are in it to max it!

In my case I experienced a lot of pain, especially because I overall had 19 fast extraction days (of 1.33mm per day) but with the help of painkillers, taking multiple hot showers/hot bathtubs, and stretching, I was determined to go all the way to the end. I managed to lower the pain mostly below 4 (out of 10, with 10 being an absolute worst pain ever).

I think tolerating pain levels of 5 or lower for say 80 days is worth the results. If the surgery has gone fairly successfully, and there is no major issue or complication, then pain management should help lowering pain to below 5 and in that case I think it's tolerable to go all the way to the max.

Multiple stretching sessions per day are necessary. Although prior physical fitness is very helpful, it is not necessary. My point is as long as the pain level can be lowered to <5, even if one feels like their legs are extremely tight, that should not stop them from going all the way to the end. Once again this is based on the assumption that the doctor leaves it to the CLL'er to decide, as he/she sees no issues, but yet does not want to push the patient to suffer while going to the max.

I hope my notes helped, but let's continue this discussion if you think needed.
 

[L8GrowthSpurt]

SNC - Congrats on your journey.  Very inspiring, especially for someone like me who is close to your age and starting height, and hoping to follow in your shadow.  CLL’ers like you, Movie and others definitely help this community. I hope to rival your beast mode performance and can’t wait to meet this challenge myself in early 2021! Thks 👍

[StrydeNailChallenge]

SNC - Congrats on your journey.  Very inspiring, especially for someone like me who is close to your age and starting height, and hoping to follow in your shadow.  CLL’ers like you, Movie and others definitely help this community. I hope to rival your beast mode performance and can’t wait to meet this challenge myself in early 2021! Thks 👍

Hi L8GrowthSpurt,

Thanks for the kind words. Such notes from you and the rest of the community inspire do try to do better.

I wish you a great 2021 with a smooth CLL journey. I make sure to follow your posts here.  Feel free to reach me here or on PM, whenever needed.

[StrydeNailChallenge]

This is the video I had promised to some of you (in two parts, cause imgur does not allow videos of more than a minute).
It's my first time posting a video, and on imgur. I am not sure if I am doing something wrong, but makes the video frame so small! let me know if there is a better way:

https://imgur.com/xW8mUgI
https://imgur.com/rxRD7W7

A few notes about this video:
1) It was taken on the 29th. On the 28th I almost fell off of a pedestrian curb side, and injured my hip [left leg, close to where nails are]. I therefore am not at my best gait.
2) For privacy reasons the clothes don't belong to me, haha!  the shoes were too tight, so I could not really put them on properly also pants are short; and very tight which may give the impression of parenthesis legs a bit, but my legs are fairly straight, most likely better than an average person.

Unlike imgur, youtube does not limit the video length, so I thought of posting a youtube link (recorded on Day 130 Post-op, Sun., Nov. 29th, Consolidation Day 49)   :

[L8GrowthSpurt]

Amazing display! Your walk looks totally normal to me. Very inspiring and makes me want to start my journey ASAP, like tomorrow...lol; Thanks for posting and happy holidays!

[BelowTheMean]

Although I already watched the original videos you posted on Imgur, seeing it again gives me hope!! I'm still 90 days away from day 130, but seeing you walk around like that really gives me some optimism that I'm sorely lacking right now.

[StrydeNailChallenge]

Amazing display! Your walk looks totally normal to me. Very inspiring and makes me want to start my journey ASAP, like tomorrow...lol; Thanks for posting and happy holidays!

Thanks very much L8GrowthSpurt,   and Happy Holidays!

I have mentioned here several times that I hope nobody here starts a CLL journey just by looking at this forum. The much safer way would be to do a lot of research beyond this forum.

I can tell you a lot about the challenges of CLL in terms of pain, etc.  to make sure you are ready for them. 

We are all different and and we should make sure we account for all the parameters before starting CLL.  I hope you use your best judgement and research skills to make a decision. This forum would then be a great resource for someone who has already decided to move forward with all the details figured out (stryde or not, which doctor, when, etc.).

 

[StrydeNailChallenge]

Although I already watched the original videos you posted on Imgur, seeing it again gives me hope!! I'm still 90 days away from day 130, but seeing you walk around like that really gives me some optimism that I'm sorely lacking right now.

Hi BTM,
Based on the first few videos you posted, I think you are doing well. Do not get too much stress. I think the most important item to look for is the x-rays. If the doctor believes you x-rays are good to perfect, then the rest (pain, etc.) would be temporary.

I still remember how hard it was to even imagine a peaceful night sleep. I thought to myself, "would I ever have a normal sleep, ever again?"   Turned out a couple weeks into consolidation, my night sleeps quickly started to be back to normal (long hours of no pain) and soon even better than my old normal, perhaps cause I take exercises, and diet more seriously and also working from home has reduced some work stress for me.  I know you will be there very soon BTM. Feel free to message me whenever you think talking to me would help.

[StrydeNailChallenge]

Day 142 Post-op (Fri., Dec. 11 ) - Consolidation Day 61

The walking time record results I had promised to some of you:

Start time around 5:01pm: https://imgur.com/BVdKAMw

Distance (Miles)              Duration (Minutes)                   Video/Image

0.5                                       ?                                       Unfortunately recording failed, but should be 7+ minutes

1                                          ?                                       Unfortunately recording failed, but should be 14+ minutes

1.5                                     <23                                       https://imgur.com/jnJIfZ3

2                                       <30                                       https://imgur.com/PG8LTpb

2.5                                    ~37                                       https://imgur.com/MxAaAIp

3                                       <45                                      https://imgur.com/KFx1QOc

A few notes:
1) I walked on a grass area that was a bit muddy. I believe I can be faster on a hard floor, but I don't want to put too much pressure on my knee joints.
2) The land was a like a small square which each lab around 0.15miles. On a straight path I can do better.
3) My shoes were not that great for walking.
4) I had a mask on for the first 0.5 miles, but I removed it for the rest of the 2.5 miles, as no one was around and I felt like walking without a mask would be easier.

I am still happy with my results. Let's see who can break my record of 3 miles in less than 45 minutes. I have been able to easily beat any fast walker I found while walking outside As I had also said before I consider myself generally as a fast walker, so I think my record is not easy to break

I walk for long distances, so you probably notice that my speed did not degrade as I got close to 3 miles!  I probably start to see a slow down if I walk for more than 10 miles!

I believe as far as walking is concerned, I definitely feel good about my progress and I consider my walking as back to my old normal.
In the quest of getting back to normal, I believe I should now focus more on jogging and swimming. I had started jogging a month ago, but from now on I will push for higher speeds and longer durations. 

Day 142 Post-op (Fri., Dec. 11 ) - Consolidation Day 61

I have decided to move my videos (from imgur) to youtube. I am therefore reposting my walking time records

Start time around 5:01pm:



Distance (Miles)              Duration (Minutes)                   Video/Image

0.5                                       ?                                       Unfortunately recording failed, but should be 7+ minutes

1                                          ?                                       Unfortunately recording failed, but should be 14+ minutes

1.5                                     <23                                      



2                                       <30                                       



2.5                                    ~37                                      



3                                       <45                                      




In addition to the notes I had posted earlier for Day 142, I would also like to add that the way I speed walk, is not marathon style. Marathon style to me looks more like running than walking. I also find it a bit funny (with the hip movements ), so I prefer to not walk like that in the park I was using to record this video   However I know marathon style, would increase speed, substantially.

Also a request: If you know someone who is a fast walker, please see if you could convince them to do walk, using similar conditions like mine and then let me know the time. I'd like to know how slow I am compared to a normal fast walker (someone who has not done CLL) and if too slow, I'd know that I have to work harder towards getting back to normal speed. 

[Highest]

Hey SNC

In your sig it says you have a 1 cm discrepancy between your legs. Why didn't you just lengthen 1 cm less on the already longer leg to fix your discrepancy?

[StrydeNailChallenge]

Hey SNC

In your sig it says you have a 1 cm discrepancy between your legs. Why didn't you just lengthen 1 cm less on the already longer leg to fix your discrepancy?

Hey Highest, 

That's a great question   Unfortunately the 1cm discrepancy comes from the tibia area (i.e., my right tibia is 1 cm taller than my left tibia). Dr. M and myself both thought it would not be a good idea to try to fix that discrepancy by adding another discrepancy (of having uneven tibia and femurs both).

No one can tell the 1cm difference. I myself can see if when I compare my legs, as my right knee is a bit taller, when straightening my legs. I must have had this discrepancy for a long time perhaps since I was growing in my teen years. However I never felt any major (negative) impact cause of the  1 cm discrepancy.

I probably can treat it with having an insole (of 1cm) in left shoes, but I have not felt any pain in knees, and my walks look normal, so I have not had any motivation to look for treating it.

[L8GrowthSpurt]

SNC - couldn’t agree more with you; advice that should guide everyone. I’ve been researching and waiting for a very long time (over a decade) and look forward to pulling the trigger in early 2021.  Happy holidays to you and all - esp those CLLers like you who have taken the time to share their experiences.

[StrydeNailChallenge]

SNC - couldn’t agree more with you; advice that should guide everyone. I’ve been researching and waiting for a very long time (over a decade) and look forward to pulling the trigger in early 2021.  Happy holidays to you and all - esp those CLLers like you who have taken the time to share their experiences.

Good to see this, L8GrowthSpurt,

I wish you a great 2021 and hope to see you here tall and strong soon,
SNC

[StrydeNailChallenge]

Day 143 Post-op (Sat., Dec. 12 ) - Consolidation Day 62
Day 144 Post-op (Sun., Dec. 13 ) - Consolidation Day 63
Day 145 Post-op (Mon., Dec. 14 ) - Consolidation Day 64
Day 146 Post-op (Tue., Dec. 15 ) - Consolidation Day 65
Day 147 Post-op (Wed., Dec. 16 ) - Consolidation Day 66
Day 148 Post-op (Thurs., Dec. 17 ) - Consolidation Day 67
Day 149 Post-op (Fri., Dec. 18 ) - Consolidation Day 68
Day 150 Post-op (Sat., Dec. 19 ) - Consolidation Day 69
Day 151 Post-op (Sun., Dec. 20 ) - Consolidation Day 70
Day 152 Post-op (Mon., Dec. 21 ) - Consolidation Day 71
Day 153 Post-op (Tue., Dec. 22 ) - Consolidation Day 72
Day 154 Post-op (Wed., Dec. 23 ) - Consolidation Day 73*

* Weekly updates or longer make more sense (than daily updates). However I list all the days to hopefully make searches more convenient. E.g., if at the top right search box, we look for Day 150 or Consolidation Day 70, the following updates would hopefully be easily found.



Updates:  In the journey of going back to normal, the most important items to note are my strength and flexibility. I feel stronger on a daily basis. E.g., I feel more comfortable with squats on a daily basis. My flexibility also improves as time passes. I have posted some videos related to my walks already.

I finally got a chance to try the monkey bars workout to check whether I could be as comfortable as I used to be, pre-op. Turned out to be piece of cake! I feel very completely while on monkey bars, as if I had not done any surgery. I now believe I could have resumed such activities much earlier. Here is a short video of my post-op monkey bars:   




Painkillers: I had stopped Gabapentin on Day 87 (Sat., Oct. 17, i.e., Consolidation Day 6). I had completed my Tramadol withdrawal on Day 90 (Tue., Oct 20, also Consolidation Day 9). I have not used any painkillers since then.

Pain: It's been a couple months I have experienced no pain or any discomfort related to the CLL surgery. I have added several daily activities (two stretching sessions, several mile walks, jogging, swimming, cycling, etc.). I get muscle soreness on legs (e.g., on calves when I walk for over 10 miles or so), which I think is normal for any athlete. Good thing is I typically feel fresh with soreness gone, by the following morning.

Sleep: My night sleeps (of minimum 7 hours per night) are even better than before the surgery. That could be thanks to my less stressful work during covid-19 times, better diet, and being more active. I also typically take an afternoon nap.

I will continue to post my updates until I feel completely normal on all activities I used to do before the surgery.

[BelowTheMean]

Thanks for the update SNC. Sounds like everything is going flawlessly! I can't believe you're already less than a month away from the 6 month mark.

[StrydeNailChallenge]

Thanks for the update SNC. Sounds like everything is going flawlessly! I can't believe you're already less than a month away from the 6 month mark.

Thanks BTM,

 Happy New Year! Wish you and ALL a pandemic free 2021, full of good things!

[StrydeNailChallenge]

Day 155 Post-op (Thurs., Dec. 24 ) - Consolidation Day 74
Day 156 Post-op (Fri., Dec. 25 ) - Consolidation Day 75
Day 157 Post-op (Sat., Dec. 26 ) - Consolidation Day 76

Jogging: I have been increasingly putting effort into jogging (in addition to the daily several mile walks) to help strengthening my legs.


Swimming: Due to the COVID-19 limitations, I stopped swimming (which has been my main workout for a long time) in early 2020 about 5 months before the surgery. It still looks scary to me to get into a pool with strangers swimming within a couple feet from me, but I thought I should take the risk and give it a try before the year ends.

The moment I got into the pool, I realized swimming is fortunately one of those activities that I feel completely normal with.

I was surprised that while swimming I did not feel like my legs are taller. It felt like old times, very normal and smooth! I have no idea why, but I take as as a good thing! 

I did the first few laps cautiously to get to evaluate my legs and see whether I can kick as if I had not done any CLL. The following are some short videos from those easy laps:

Breaststroke :  Although I took it easy at start, it felt so good to be back to swimming after about a year. Looking forward to a pandemic-free 2021 and regular swimming:




Freestyle including flipping (but easy, not pushing onto the wall too hard :




Butterfly  : Back crawl followed by butterfly. This is my first butterfly lap since early 2020. I was hesitant on trying butterfly before getting into the pool, considering the heavy kicks it demands; however, the moment I started swimming; it felt so right and normal as if I had not done the CLL surgery: 





I think I would have resumed swimming long ago during distraction, had we not have this lockdown situation or if I had my own private pool. I wish I can find a safe place to continue to swim. I feel like my body really needs that!

I hope at some point I swim even faster than before, using my new height!  I will post more videos to show my progress.

[L8GrowthSpurt]

Happy New Year, SNC! Thanks for another great post; at your pace of positive progress and return to athleticism I’m half expecting to see a video of you summiting Everest by the end of January! 🤣😂

Thanks for sharing.  Very informative and inspiring. 💪

[StrydeNailChallenge]

Happy New Year, SNC! Thanks for another great post; at your pace of positive progress and return to athleticism I’m half expecting to see a video of you summiting Everest by the end of January! 🤣😂

Thanks for sharing.  Very informative and inspiring. 💪

Happy New Year L8GrowthSpurt,

I am glad you liked the post. Looking forward to seeing your journey and all the accomplishments. 

Climbing Mount Everest would be a dream come true. My main weakness is my low tolerance of extremely low temperatures. Mount Everest can get as cold as -40 degrees Celsius; adding wind and low pressure, I don't see high chances of survival for myself!  In fact I had written in my diary about it! that one of the reasons I decided to do CLL, was my lack of confidence in climbing Mount Everest. It's like I could not climb 800,000 cm, so instead I went for CLL to be 8 cm closer to it

[StrydeNailChallenge]

Day 155 Post-op (Thurs., Dec. 24 ) - Consolidation Day 74
...

As part of my daily stretching routine, I make sure to do some Forward Fold or Standing Forward poses, like this one:



I could resume such exercises, a couple weeks after the surgery. However I gradually lost flexibility during the distraction phase. The two week fast distraction time (of 1.33mm per day) was my worst time in terms of flexibility. About a week after the last day of distraction, I could resume the forward or standing fold pose and flexible enough to touch my toes or the floor; with a short warmup. Now I can do that without any warmup. 

I would also like to write about another warmup time! I would like to call it the CLL'er Rebooting Time (CRT)    By CRT , I mean the time it takes to start feeling normal while walking, after a long duration of being in a steady position, e.g., after a long drive, or being in a sitting position for a long time.

I think for someone to be back at normal, CRT should be zero. That is not the case for me yet. If I drive or sit for say more than an hour, then starting to walk, is also a reminder of my surgery. Not that I would necessarily have pain or soreness, but a general feeling that my walk does not feel normal and the gait may not be normal during CRT. However as I built strength, my CRT got shorter. E.g., back in November (around month 4 post-up) my CRT was around a minute. I would joke to my friends that I am like a Windows 95! I take time to reboot These days it is typically less than half a minute.


 

[asian]

Happy new year! SNC, your flexibility is amazing!! I'm really impressed by your videos. Your gait is completely normal now! I think hard-working is the key to recovery.

[BelowTheMean]

I'm amazed by your flexibility as well. Before the surgery I might have been able to touch the road while standing on the curb, but right now I'm many inches away from even touching my toes. I've been working hard on my hamstring and calf flexibility but clearly I have a long way to go! Your swimming videos are great as well. I'm a bit wary of going to a public pool during the pandemic as well, but I'd love to try swimming in my current condition.

[readyprecisestryde]

I stopped lengthening several months ago and I am several inches away from touching my toes too. I stretch several hours daily and work super hard at it. I am hoping to gain more flexibility in the coming months. Amazing recovery SNC!!

[StrydeNailChallenge]

Happy new year! SNC, your flexibility is amazing!! I'm really impressed by your videos. Your gait is completely normal now! I think hard-working is the key to recovery.

Thanks Asian.
I hope your 2021 will turn out to be your best year so far, in every terms.
SNC

[StrydeNailChallenge]

I stopped lengthening several months ago and I am several inches away from touching my toes too. I stretch several hours daily and work super hard at it. I am hoping to gain more flexibility in the coming months. Amazing recovery SNC!!

Hey rpc bro,
Thanks for your notes. You helped me a lot throughout this journey and I hope I manage to return the favor.   Please feel free to PM anytime, so we double check the exercise routine you take.

SNC

[StrydeNailChallenge]

I'm amazed by your flexibility as well. Before the surgery I might have been able to touch the road while standing on the curb, but right now I'm many inches away from even touching my toes. I've been working hard on my hamstring and calf flexibility but clearly I have a long way to go! Your swimming videos are great as well. I'm a bit wary of going to a public pool during the pandemic as well, but I'd love to try swimming in my current condition.

Hi BTM,

Please do not worry too much about your Forward Fold flexibility during the distraction stage. Assuming you have at least one forward fold move added to your stretching set and you repeat the set, two or three times per day, you should get your flexibility back soon after you are done with the distraction phase.
 
Please feel free to PM me, anytime you think  I can help with something.

[StrydeNailChallenge]

Happy new year! SNC, your flexibility is amazing!! I'm really impressed by your videos. Your gait is completely normal now! I think hard-working is the key to recovery.

I'd also like to add one point, since you mentioned the hard work.

As IFS and some others have stated, the CLL process changes us forever. It not only makes us taller, but also hopefully makes us a better person; wiser, stronger, more patient, more determined and more tolerant of tough situations. The fact that many of us stick to the exercises and diet and spend a good amount of time daily, is very impactful.

I am an athlete, but I've never been a pro; I therefore never needed to spend long daily hours for long periods, preparing for a professional competition. That has changed for me. I feel like the consistency with exercises and not missing them for almost six months have made me even stronger than my pre-op, physically and mentally.

[Tartar]

As part of my daily stretching routine, I make sure to do some Forward Fold or Standing Forward poses, like this one:



I could resume such exercises, a couple weeks after the surgery. However I gradually lost flexibility during the distraction phase. The two week fast distraction time (of 1.33mm per day) was my worst time in terms of flexibility. About a week after the last day of distraction, I could resume the forward or standing fold pose and flexible enough to touch my toes or the floor; with a short warmup. Now I can do that without any warmup. 

I would also like to write about another warmup time! I would like to call it the CLL'er Rebooting Time (CRT)    By CRT , I mean the time it takes to start feeling normal while walking, after a long duration of being in a steady position, e.g., after a long drive, or being in a sitting position for a long time.

I think for someone to be back at normal, CRT should be zero. That is not the case for me yet. If I drive or sit for say more than an hour, then starting to walk, is also a reminder of my surgery. Not that I would necessarily have pain or soreness, but a general feeling that my walk does not feel normal and the gait may not be normal during CRT. However as I built strength, my CRT got shorter. E.g., back in November (around month 4 post-up) my CRT was around a minute. I would joke to my friends that I am like a Windows 95! I take time to reboot These days it is typically less than half a minute.


 

What a beast! Amazing even for a normal person

[ghkid2019]

Yeah, that kind of flexibility just barely 5 months after cutting your thigh tissue and breaking both femurs is illegal. The most impressive patient I've ever seen... StrydeNailChallenge