Femurs with Dr. Shahab Mahboubian - July 2020

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I did something crazy

First I would like to remind everybody that Gabapentin's side effects include memory loss.

I schedule my 4 daily distractions (adding up to 1.33mm per day) as follows:   
1st distraction of the day: Shortly after 12 am (early morning) : 0.33mm     
2nd distraction: around 6am: 0.33mm 
3rd: around 12pm (noon): 0.33mm
4th: around 6pm: 0.34mm

Today I did my first two distractions as scheduled. I also did my 3rd one around 12:02pm. Then I fell asleep [one of the side effects of Gabapentin is drowsiness, which I think helps with sleeping! a good side effect ]   I woke up around 12:50pm and by 12:52pm, I was doing my 4th distraction of the day, cause I had forgotten I just did one, 50 minutes ago!!

This means I lengthened my legs by 0.33+0.34=0.67mm in about 50 minutes 

First I thought, oops, I am going to get a hurt [Russel Peters style ], but then I remembered that old times, I watched a clip of a CLLer who, for distraction, would basically turn his ankle with a clicking sound and that would lengthen his legs by 1mm. So that means in a matter of seconds the body got extended by 1mm. I therefore think 0.67mm extension in 50 minutes would not be that crazy.

I then thought I may learn something useful out of this experience and possibly come up with a better schedule for future sessions. Surprisingly 2 hours have passed since then and I don't have much pain.  Hypothesis: Do two of the distractions within a short time period. This would create a long time gap to the following distraction, e.g., the following example schedules for 4 distraction and 3 distraction days:

4 distraction days: 1st: 12am, 2nd: 6am, 3rd: 12pm, 4th: 1pm

3 distraction day: 1st: 7am, 2nd: 3pm, 3rd: 4pm

 There is a low chance this would help with the pain management.  It's too soon to tell if my hypothesis may have some truth in it. I also need to get approval from Dr. M. on that.

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I have done quite a few trial and error practices based on which I made several recommendations in my journal here.   I just tried to summarized them for DLL, one of our new CLL'ers.  I am also posting them here, just in case anyone did not check DLL's diary pages:

Recommendation to better manage the post-op days:   


1) Whenever you feel pain, try to do stretching no matter when (even middle of the night).
The best I found is to straighten your legs while sitting on bed and then bend your body towards your knees. The next one that helps me is to lie down on your bed, or sit up a bit with your forearms on your side on the bed, while straightening your leg, then lift one leg at a time, doing two practices: one keeping both legs straight and pulling one as high as possible. The other practice, is to try to bring one close to your chest, even if both legs start to bend.  Another helpful one for me is to have floppies on (which adds about 1.5cm to my height), stand straight on the floor and then bend to try to touch the floor.  Recently instead of keep pushing my hands down to touch the floor in one shot, I have to frequently push and let go many times and each time
getting closer to the ground and usually in about 30 seconds to a minutes, my fingers finally touch the floor.  Ideally every time you have pain you would want to repeat your PT sessions. However some of our folks here suggest that it is a good practice to avoid those exercises that create nerve pain.  I do not know which exercise would give me nerve pain, therefore every time I experience pain and also before and after every distraction session, I try to repeat my PT routine which is about 10 exercises.

2) Use BIOFREEZE Cold Therapy Pain Relief [pack of 3] (Costco, Sam's Club, etc.) and roll it on the painful area with a bit of pressure to not only apply the gel, but also massage your legs with the roller.    This is the best ointment I have been using.

I also got  Capzasin Arthritis Pain Relief, Quick Relief Gel 1.5 oz (42.5 g) [pack of 2] from Amazon.  This has one problem. After the few hours at some point it would make your leg fired up! You'd feel that your legs are on fire    If you try to wash it off your legs, your legs would burn real bad! you better wash them with fairly cold water (and body gel/soap).

I have tried some ointments from European and Asian countries, and since you'd not be able to find them here, I don't mention them. However as I said BIOFREEZE is the best of them, and I would say just having that as an ointment for local pain relief would be sufficient.

3) If you cannot sleep, watch a movie on TV or your computer, while you are set in a nice sleeping position. There is a high chance you'd go to sleep quickly. I typically watch Friends on my computer. I typically fall asleep as early as a couple minutes, and as late as an episode or two later.

4) I put on skiing under pants to get warmed up and also tight jeans and they both somehow help me manage pain! I know it sounds crazy but I think skiing under pants warm up your legs so they act similarly to local pain relief ointments. Tight jeans, most likely put pressure on your legs, and help you forget the pain I guess.

5) Eating/drinking may work like a distraction from pain. I notice that most of the times while eating or drinking and a while after, my pain goes away.

6) Try all sleeping positions including face down, side, face up with a pillow or two under your knee or without any pillows, with or with blankets, etc.   frequently. Body preference may change, so hopefully you would find the optimum sleeping position every night.

I hope these help,
SNC

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Quote from: StrydeNailChallenge on September 19, 2020, 09:49:14 PMI did something crazy




This means I lengthened my legs by 0.33+0.34=0.67mm in about 50 minutes 

 There is a low chance this would help with the pain management.  It's too soon to tell if my hypothesis may have some truth in it. I also need to get approval from Dr. M. on that.

I had since 12:50pm till 12 midnight (about 11 hours) to not worry about any distractions!
However, I don't think it made a noticeable difference in terms of lowering pain. To find out whether this really works, I should repeat the crazy schedule a few times, but since I give a low chance to work and considering potential risks of lengthening twice in a short time, I prefer to abandon my hypothesis above and stick with the normal schedule (distraction every 6 hours for 1.33 mm days and every 8 hours for 0.99 mm days).

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Quote from: StrydeNailChallenge on September 19, 2020, 10:06:18 PM3) If you cannot sleep, watch a movie on TV or your computer, while you are set in a nice sleeping position. There is a high chance you'd go to sleep quickly. I typically watch Friends on my computer. I typically fall asleep as early as a couple minutes, and as late as an episode or two later.

I don't have trouble sleeping normally, but I find that sometimes if I watch a long YouTube video on something not that interesting it's really good at making me sleepy. With this method I can easily fall asleep even while sitting in an uncomfortable chair.

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Day 59 (Sat., Sep. 19) - 55.6 mm Taller


I have described earlier the distraction timing mistake I made today! In short what happened was that most likely due to the memory loss side effect of Gabapentin, I totally forgot that I had done by third distraction session of the day at 12pm and after the 40 minute nap, I did another distraction session around 12:50pm. I was worried that two almost back to back sessions would result in high pain, but that did not happen; which is great!  I later thought since I was done with all the 4 sessions by 1pm, I had about 11 hours of no distraction session and I thought what if that turns out to be helpful in lowering the pain level. That did not happen either.

As usual, in addition to two Gabapentin and two Tramadol pills, stretching, and hot shower/hot tub helped mitigate the pain.

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Quote from: BelowTheMean on September 20, 2020, 07:59:58 PMI don't have trouble sleeping normally, but I find that sometimes if I watch a long YouTube video on something not that interesting it's really good at making me sleepy. With this method I can easily fall asleep even while sitting in an uncomfortable chair.

Haha, never tried that, but it's good that you discovered that for yourself

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Day 60 (Sun., Sep. 20) - 56.9 mm Taller


I am on day 13 of 4 distraction sessions per day (i.e., 1.33 mm per day) prescribed by Dr. M., given my exceptionally high growth. Tomorrow will be the last day and I can then switch to 3 sessions per day. Pain management has been my biggest challenge during the last two weeks. Especially starting evening times and all the way through when I go to bed and sleep (around midnight), pain and discomfort are much higher than other times.

I take hot showers/jets twice, one around 12 noon, having done two distraction sessions already and one around 12 midnight after the remaining two sessions of the day.    I massaged my calf (left leg) , yesterday and today during hot showers/jet and it feels a lot better, already.

Today is also Day 51 since I started the distraction phase. For 51 days, 56.9 mm distraction is very fast. I am curious if any other CLL'er was ever this fast in lengthening.

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Hey SNC,

Are you using a specific system to keep track of how many times you distract a day and to make sure that you do your distractions on time? Like do you set alarms, keep journals, excel sheets, etc. to map out the times you need to use the ERC device? Also, are you more exhausted during the day having to distract 4 times daily? Hope you are enjoying your new height!

-brondo

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Quote from: brondo on September 23, 2020, 05:40:18 AMHey SNC,

Are you using a specific system to keep track of how many times you distract a day and to make sure that you do your distractions on time? Like do you set alarms, keep journals, excel sheets, etc. to map out the times you need to use the ERC device? Also, are you more exhausted during the day having to distract 4 times daily? Hope you are enjoying your new height!

-brondo

Dear brondo,   Nice to hear from you.  I use alarms, only when I am going to take a nap and I am afraid that I would not wake up in time (I need about 20 minutes to stretch before doing the distraction. If I miss on that 20-minute stretching session, my post-distraction time would be more painful).

I don't use any journals, excel sheets, etc.  Instead I try to remember the schedule of the day. So far I have rarely made mistakes. I think many others most likely do like me, cause remembering 3 or 4 time marks for daily distractions would not be too hard, even with Gabapentin (which results in memory loss [I think short term memory loss only]).

The new height is exciting! Especially during COVID-19 when we are all at home and there is not much excitement other than all virtual stuff in the Internet and TV; growing feels and looks so exciting!   

I recommend to all to have a tall mirror and enjoy the process. I did not do this myself, but taking pictures for memories, sounds like a good idea

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Quote from: brondo on September 23, 2020, 05:40:18 AMHey SNC,

Are you using a specific system to keep track of how many times you distract a day and to make sure that you do your distractions on time? Like do you set alarms, keep journals, excel sheets, etc. to map out the times you need to use the ERC device? Also, are you more exhausted during the day having to distract 4 times daily? Hope you are enjoying your new height!

-brondo

Dear brondo,   Nice to hear from you.  I use alarms, only when I am going to take a nap and I am afraid that I would not wake up in time (I need about 20 minutes to stretch before doing the distraction. If I miss on that 20-minute stretching session, my post-distraction time would be more painful).

I don't use any journals, excel sheets, etc.  Instead I try to remember the schedule of the day. So far I have rarely made mistakes. I think many others most likely do like me, cause remembering 3 or 4 time marks for daily distractions would not be too hard, even with Gabapentin (which results in memory loss [I think short term memory loss only]).

The new height is exciting! Especially during COVID-19 when we are all at home and there is not much excitement other than all virtual stuff in the Internet and TV; growing feels and looks so exciting!   

I recommend to all to have a tall mirror and enjoy the process. I did not do this myself, but taking pictures for memories, sounds like a good idea