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 FarTill 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 2019As 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/TI40vZOThe frame and bandages:
https://imgur.com/xCn7DQThttps://imgur.com/CjOoqmqhttps://imgur.com/0BpLUad