After talking with Dr. Paley, it seems possible to get 7-8cm. They asked my goal on my consultation. I told them I want to go max as long as my body allows. We will see how that goes. So far so good...3mm as of last night.
Today is exactly post 7 days op. I am seeing great progress yesterday. I was able to put my sox on by myself. Last night I was able to flip on my bed. I sleep few hours on my stomach. Every day I am picking something new. I do get stiffness and weird pain (level 3-4) right after lengthening. Lately I feel electrical tingle on my left knees through upward muscle when I walk. It's on and off. It only happen after I started lengthening.
Everything is going well so far. Legs are gaining strength slowly and PT is definitely helping. I am looking forward to going at the center everyday. They ask to do two times PT at home and I am mostly doing 4 times. One at the center and one later in the evening and two interval at night. I have a friend who helps out on shopping, lengthening, buying lunch and dinner. Mentally I am doing well because of him. It will be tough to be alone. Possibly that is the main reason I am sailing so far.
Cooper Precise 2 with Dr. Paley (June 3rd-2014)
Great start so far and good to know your body can handle that amount according to Dr Paley. Btw, how much contact will you have with him throughout your lengthening phase? Are you able to call him any time you wish?
Congratulations Cooper! How are you doing these days? I am new on this forum but have been reading up about LL for a while now. I am keen on getting this surgery done in the US. I think Paley is my first choice. I'm in my 30s and I'm a little nervous about how my body would handle the surgery. What are your thoughts?
I am about 2.3cm, two millimeters shy away from inch. I will hit one inch in two days. My journey has been incredibly pain free. I never had pain above 4 level, considered very lucky on that regard. I normally take oxycodone (generic Percocet) 5mg twice a day. I probably could do without it but I am working full time and any inconvenience and discomfort hinders my work performance.
I break down this journey in 2 phases. The first one lengthening and second one consolidation. One third down and two third to go. If I keep my current pace I will be done in August 26th. I am planning to stay here through out. My friend who is helping me out is leaving in July 15th and I will alone. I am talking few guys to come out and help me here see how that goes. If not than I will try to stay strong and fight the battle myself next 43 days.
I have been working full time since the week of surgery. Fulltime meaning 40 hours a week. Some day I work 10 while other 3 or 4. My days goes really fast because I keep myself very busy with work, PT, hot water therapy at bath tub and stretching twice a day at hotel.
I took my first x-ray last week and distraction was exactly as expected 1.6cm from 16 days of lengthening. I will post it later.
Quote from: KiloKAHN on June 11, 2014, 02:05:09 PMGreat start so far and good to know your body can handle that amount according to Dr Paley. Btw, how much contact will you have with him throughout your lengthening phase? Are you able to call him any time you wish?
I have not had much contact with Dr. Paley but I can email him anytime and he responds very quickly. Usually he sees the patient every two weeks when the x-ray is done. On my last x-ray he was out on vacation and I saw his assistant.
Not sure about calling him anytime, I do not have his private phone number. His time is very demanding, may spent half the time at operating theatre. But if there is need and concerning thing he can be reached. His practice is very well structured. The PT looks at my scars everyday to make sure they are healed and ask plenty questions about my well being, pain level and discomfort.
Few weeks ago I was concerned that my right leg might have infected. I had itchy feeling inside my leg and the PT sent me to talk to physician assistant right way and they looked at it and determined it is nothing but just spams. Advice to drink plenty of water and fiber.
Quote from: Grow on June 20, 2014, 07:27:53 PMCongratulations Cooper! How are you doing these days? I am new on this forum but have been reading up about LL for a while now. I am keen on getting this surgery done in the US. I think Paley is my first choice. I'm in my 30s and I'm a little nervous about how my body would handle the surgery. What are your thoughts?
You will do fine with Dr. Paley. I see mostly young patient here from age ranging from 20-30s. I am probably one of the older ones doing CLL. He has very good setup. The PT staff are very well trained, you are given instruction and just need to follow through out the procedure. I was expecting lot worst but so far the ride has been great. I have still 67% to go...
Thanks for the update Cooper.
I was hoping to have a job while lengthening as well. Is it good to be working or would you rather have taken a few months off for LL if you could?
Good luck!
I am doing very well so far. I should be at 42MM end of the day. I feel bit taller now and the feel is amazing...in one word...priceless!!! I still need to go lot more, cannot wait to be 7 cm taller. I do not know the exact cm of LL, playing by the ear.
Same routine every day. Therapy, work from hotel and hang around with other CLL friends. Past few weeks having ton of fun, drinking and socializing like before the surgery. I feel completely normal and sometime forget I have two broken bones 
I am actually going out of town on business for few days next week. I have a friend and together will drive to Tampa. My first business trip after the surgery. I am bit nervous whether I can sit on chair and attend meeting for hours. Will see....but feels great so far. Will be a good break from WPB.
There are lots of patients here in hotel. About 7-9CLL from many different countries. I love going out breakfast in the morning and socializing with LL buddies and their family. I do not eat breakfast every day but when I am out there I do have fun. This has been very good journey so far and I could not ask for better place or doctor. The CLL community is like family and you get bonding pretty quickly. Some of the friends I met here probably will remain good buddies forever. We went through similar pain, experience, stress and fun whenever we can.
I am pretty busy working full time, doing therapy thrice a day. Sometime I only do two. My body get tired and so as my motivation. I see glass more than half full now. Seems like LL thing will be over soon.... Asta la vista....later!
This is the last one at 30CMs. I am scheduled for Monday and will post that later when time permits....should be around 43cms by then...
Which hotel are you at?
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