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[prMaster]

Hi all,

Started my CLL journey 21 days back on 16th March 2019. It has been a huge leap for me and I never expected I'd ever reach this point. Feeling great about myself and really hoping my journey would be smooth.

My stats are:
Age:25
Gender-M
Current Height-161cms
Expected Height-167cms

I am planning to increase my height by 6cms. If everything goes well and if there is no pain and if my muscles, nerves can bear then I might increase till 6.5cms.

Journey So Far

Till now my experience here has been pretty good. The accommodation is good and very comfortable. After checking-in at the guesthouse I reached the hospital Balaji Action Medical, Delhi on 15th March.  Day 1 in hospital they did all the pre-op check-ups, blood test, chest scan, body scan, X-ray and cleared me for the surgery.

On 16th March my surgery was performed at around 10AM. It was my first time ever in an operation theatre and it was more comfortable than I expected. The doctors gave me epidural injection on my back and numbed my body half-way down. I was kind-of semi-conscious during the operation. The surgery was performed by Dr. Sarin and I couldn't see anything what they were doing. The surgery lasted for about 1.5hrs to 2hrs and they took me to post op-ward. After few hours I was taken back to my room.

Apart from the day after the surgery I didn't feel much pain in my legs. The pain was controlled by using painkillers and epidural injections. The amount being injected to my body was reduced each day and they finally stopped that thing. Even after stopping epidural injections I did not have much pain. I had more pain on my back and my butt because of on lying in bed only in one position. I was handling my backpain by adjusting the bed in different angles. I was discharged from hospital on 21March.

I had a bandage change in hospital. The second set of bandages were removed on 22nd March. Since I was not having any pain in my legs, they asked me to start lengthening on 23rd March. I was instructed to increase 1mm per day in 4turns. Each turn will be of 0.25mm and the time difference between each turn should be around 3 to 4hours.

About 3mm into distraction I was having strong pain in my leg. Especially in the left leg where the bones were broken. I had asked for advice in this forum regarding the same. I also talked with my physio regarding this and he told me there’s nothing to fear the pain will ease out in few days. Currently I do not have any pain in the bones.

So far, my journey was good. Someday I do have pain in my leg, especially during night after completing the final 0.25mm turn. I also had my fair share nights where my sleep is broken or I'm not able to get any sleep. I was always a side sleeper but after getting the frames I am only able to sleep on my back, that makes things worse. I think more than being physical challenge CLL is more of a psychological thing. You really need to have a grip over your nerves sometimes.  This forum has really helped me a lot to overcome my fears and making me strong for this journey.

As of now- 07 April 2019

As of today, I have distracted 14mm. I am having dedicated physiotherapy sessions two times a day. Apart from that I also do some stretching myself. Since my frames are not weight bearing I cannot do any standing right now. I can only stand once my frames are removed and most probably doctor will tell me when I can start standing after considering my x-ray and all other stuffs.

I seriously hope my diary will be helpful for others who are planning to pursue CLL. I will continue to update my diary and seek advice from the CLL veterans.

Thanks
(English is not my native language pardon me for any mistakes)

My first X-ray after 10days of lengthening:
https://imgur.com/TI40vZO

The frame and bandages:
https://imgur.com/xCn7DQT
https://imgur.com/CjOoqmq
https://imgur.com/0BpLUad

[montahn]

I am planning to increase my height by 6cms. If everything goes well and if there is no pain and if my muscles, nerves can bear then I might increase till 6.5cms.

if possible go for 7.5 cm. consult with Dr. Sarin.

plz keep this thread alive

Thanks

[ned_flanders]

if possible go for 7.5 cm. consult with Dr. Sarin.

plz keep this thread alive

Thanks

7.5cm on tibia? what are you stoned or just stupid?

[epikness]

Pretty sure 6.5cm is the limit unless you have really long legs and good body genetics.

[prMaster]

Haha True! I do not have really long legs. I also believe 6.5cm should be the maximum. If my legs won't allow I will not be even crossing 6cm. Lets see, right now I am in distraction phase, I think my body will start showing signs after 4.5 or 5cm.

[Ghostfish]

Hi prMaster
Congrats on starting your journey for the height!  Yes, the safety is the number one.  Tibia is generally less tolerable for lengthening than femurs.  6-6.5 could be the max in general.  I know some people have done more than 6.5 or 7.  But it will take much more time to recover or may not even recover well. 
Plus, I think 1mm a day for tibia is a little too fast. It may be ok for the early phase of lengthening like ~2cm.  So be cautious about lengthening rate from now on.
Good luck!

[prMaster]

Hi prMaster
Congrats on starting your journey for the height!  Yes, the safety is the number one.  Tibia is generally less tolerable for lengthening than femurs.  6-6.5 could be the max in general.  I know some people have done more than 6.5 or 7.  But it will take much more time to recover or may not even recover well. 
Plus, I think 1mm a day for tibia is a little too fast. It may be ok for the early phase of lengthening like ~2cm.  So be cautious about lengthening rate from now on.
Good luck!

Thanks mate!.. I also believe 6 to 6.5cms is the max. Here my physiotherapist is also recommending me to not lengthen above 6cm. I talked with my physio regarding my lengthening rate, he told me to continue 1mm/day till 4cm then reduce to 0.75mm/day if I am feeling any pain or tightness in my leg.

[Ghostfish]

Sounds great!!  Keep up the good work!! 
Good luck!

[prMaster]

Update- 14 April 2019

So, I am officially 2cms tall 2.1cms actually, if you count today. There’s nothing much been happening this week, the lengthening and physio is going as usual. I have started working from home from my laptop, and the week just flew by. It’s really good to have something to keep you distracted. Also, there are 2 more patients in the guesthouse so after the work we hang around, watch TV together or do some snacking.

Right now, I am having 2 physio sessions and I am doing 2 more myself. My physiotherapist asked me to add in one more sessions and that to just before the sleep so that the muscles are relaxed and flexible for the sleep, so I must do that from tomorrow. I feel my left leg is much tighter than my right leg, especially in hamstring just below the knees. It’s not a very hard pull but I can feel the tightness, I feel it mostly during night, especially while trying to sleep.  Did you guys ever face that situation around 2cm mark? Just curious.

The pain is quite normal and bearable and mainly I have it during the night mostly after 9 or 10 P.M. Why I am not sure it’s like that, it’s like pain is running on some kind of an alarm clock. My physio told me the body is very weak during the night and I too think that might be a reason. But I really don’t give much bother to the pain. I just try to keep myself distracted by playing PUBG with my friends or by watching Netflix.

I was thinking about the diet I am taking and whether it is correct or not. You guys can give me a helping hand in here. I am already drinking around 700ml of milk with protein powder in a day, having ample amount of meat every day-mostly chicken and veggies also. In fruits I eat 2 oranges and 2 bananas in a day. I also do some snacking in evening or night if I am having craving.  I am not pretty sure if fried snacks and sodas are good at this time. What else do you think can be a healthy alternative to sodas and snacks? Sometimes at night or evening I am really having this craving to eat something but it should not be heavy like a full meal but something satisfying enough. Also, what do you think should be my calorie intake and apart from protein powder do I need to take any other supplements? Do let me know.

[Great321]

I read somewhere that drinking soda isn't good for bone growth.

[prMaster]

Are you sure about this? Because when I talked here they told me there is no relation between bone healing and sodas.

[Great321]

https://www.betterbones.com/bone-nutrition/so-long-to-soda/

Dr. Giannakos, my other doctor didn't seem to be excited when I asked him if I can drink coca cola.

[prMaster]

Thanks!.. Actually I am not drinking sodas that much. I will reduce the amount. Also I may not be facing caffeine issue as I am not drinking colas, at times mostly those colourless soda drinks. But yes! the sugar content in these drinks are pretty high so its better to reduce.

[GrowTow]

Thanks!.. Actually I am not drinking sodas that much. I will reduce the amount. Also I may not be facing caffeine issue as I am not drinking colas, at times mostly those colourless soda drinks. But yes! the sugar content in these drinks are pretty high so its better to reduce.

From what I know, the fact of sodas making your bones less dense are blown out of proportion. They did 1 study in which they found that if older women specifically drink cola; they lose bone mass in the hips. Specifically only cola. Other sodas had no effect. Cola also didn't have any effect on any other age range.

But this was literally one study which could've been easily manipulated.

In short: It's bull. Drink whatever you want. But obviously soda is still bad for you in general.

[Francesco]

Hello man.

Hope you are doing fine.
2cms is a very remarkable point.


Keep pushing.

BR.

[prMaster]

Thanks.. Ya I don't drink cola that much- it disturbs my sleep, and I really don't want my sleep disturbed during limb lengthening haha...

True.. Sodas are not good in general. I will definitely cut back

[prMaster]

Hello man.

Hope you are doing fine.
2cms is a very remarkable point.


Keep pushing.

BR.

Thanks for all your support Francesco.

[StrangeDays67]

Definitely don't go for 7.5 cms, thats way too much.

[prMaster]

Definitely don't go for 7.5 cms, thats way too much.

Ya True.. I'll stop at 6cm.