Quote from: YellowSpike391 on June 09, 2014, 08:27:13 PMBig D, so sorry to hear about your scarey experience. I am glad that you seem to be doing much better!
Seeing what you went through with the cream of the crop (Dr. Paley) and not being phased much makes me feel like I'm finally 100% ready to do this. I only hope I get off Dr. Rozbruch's waitlist and do this in early July instead of early August!!
Best of luck, I'll be following your story as I'll be doing internal femurs too!
Thank you YellowSpike! You will fare just fine, as long as you have the time and support base, I totally advocate for you to do this surgery.
Quote from: Cooper on June 09, 2014, 11:13:44 PMHey BigD,
Nice to finally see you. It was last week but have not mentioned here. You are doing pretty well now. Bit difficulty at the beginning but all that is over. I am sure pal you will do just fine. Keep up the good work, PT at the center and hotel, medicine and positive attitude. You will add 3 inches in 3 months time. You are growing as we speak and so am I.
Good to meet you bro. I am sure you it will get better here on.
Cooper
Great meeting you too Cooper. I can't wait for all the exciting road trips we'll have this summer! 
Quote from: mediocre on June 10, 2014, 02:39:50 AMGreat update. I find your posts very educative and I'm sure it would continue during your recovery/lengthening/consolidation phase.
All the best.
Cheers! I like to update when I have something to say that could be useful to others. 
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Day 14
My lengthening journey is very stable now. I reached 1 cm today and I should be 1/8th to my goal. Next Monday, I have my followup with a PA to get x-rays done and see if I'm lengthening properly and if I need to speed up my lengthening. I have a feeling they'll ask me to speed up to 5 lengthening sessions a day (1.25 mm/day) due to risk of pre-consolidation but we'll see.
My pain is about where it was in my last update (3-4) and I'm keeping it in check by taking oxycodone every 4 hours. I do however now wake up from pain. Last night, I woke up around 5 AM with about level 6 pain and I had to stand up and walk around to take my mind off the pain. I couldn't take my pain killer unfortunately because I needed to take my pain killer 30-45 minutes before my PT session (which was at 8 AM). If I would have taken it at 5 AM, then I would have had to wait until 9 AM to be able to take my second oxy, which would have been too late for PT. The 4-hour rule probably isn't this strict, but I'm going to be on pain killers for a long time so I want to treat my liver as well as I can.
I believe this pain came a lot from the lengthening and lack of stretching before sleeping. I do most of my stretching during the day because that is when my nurse is around, and you cannot do a lot of the important stretches by yourself. For this reason, I'll probably ask my nurse to come for 1 short hour during the night before bedtime. I also emailed Dr. Paley to see if I could get any medications for sleeping (like tramadol, which a lot of lengtheners use). He hasn't responded yet so I'll update later with what he advises.
Stretching is the end all be all for LL. I don't know how people could get through LL without a strict routine of stretching everyday. The pain is unbearable if you don't stretch, your legs become stiff and difficult to move. I love going to PT everyday, even though in some stretches I'm in unbearable pain. I'm grateful that the PTs know what they're doing, and know how to avoid giving me pain when possible. For example, during the quads stretch when my left leg is lifted in the air and my right knee is bent and pushed down, I get bad pain around my right knee. This is burning pain right due to my ITB release, and located on the same area, and the PT knew to relieve that pain, that she had to pinch that site. So while pinching the site, she managed to relieve that pain and still give me a good quads stretch.
PT for 1 hour a day at Paley's clinic is great, but it's not enough. All of our PTs require us to do all our stretches at least 2 times a day on top of what we do at the clinic. I currently stretch with my nurse after PT and then stretch by myself at night. I don't recommend doing stretches without someone else because a lot of the important stretches require someone else present and also we don't like to inflict pain on ourselves, so we go easy on ourselves while stretching. For this reason, I'm probably going to get another PT through my insurance and try to milk as many sessions as I can. Stretching is so important, this cannot be stressed enough. Also, my physical therapist allowed my nurse to video record her doing all the stretches on me, this way I can show my new physical therapist when I eventually hire them. I have all the videos backed up and ready to be shown. I'm also going to record any new stretches I come across. I'll eventually upload these to my YT channel for you guys to look at, once I'm not lazy enough to edit and blur my face out of them. Disclaimer: lots of crying children in the background of these vids (and maybe some whimpering from me. )
I've encountered a new pain in my knee, which doesn't feel related to muscle stretching pain. This one feels like nerve stretching pain, which I'm worried about. It's a sharp burn that happens for a few seconds at random. It's not enough to bother me, but it does bring concern. Another lengthener I've been speaking with (and his mother who is a wonderful woman) had nerve decompression surgery done on his knees after having extremely bad nerve pain in his knees. This is a scary thought, going back in for additional surgery. It has set him back a lot, and it sounds like he's in more pain than usual, but he's still pushing through with his mother, who is also a PT (lucky him!) She has offered to give me PT with her son, to motivate him, but I haven't taken her up on her offer yet.
My duck-ass is visible, and my butt is entirely gone. These 2 I'm not very worried about because I'll eventually lose the duck-ass and regain my muscles, and they're only temporary faults.
In other news, my days have gotten so much better overall. Yesterday, I was finally given the OK to take a shower (actually, the doctor said "Please BD, for everyone's sake, take a shower!" 
). I took a sitting shower for the first time and it went well, and I took another today. It's quite easy, you just have to lower yourself from the walker onto the seat, leave your walker in the shower (make sure to hang a towel from the walker as well) and once you're done washing yourself with the detachable shower head, you dry yourself off with the towel and raise yourself back onto the walker. On top of finally getting to wash myself, I can finally ride in cars! This is monumental for me because now I'm not limited to where I can go. I went and got a haircut today at a barbershop named fittingly for me right now, called "Shorty's" . To get into a car, I used my walker to walk out to the car, open the passenger door, push the seat all the way back, lower my rear into the seat, lift my left leg into the car (sometimes using my hands to assist my leg if it's too difficult to raise it that high), and then lifting my right leg into the car. My nurse then folds up the walker and puts it in the back. The guy who works the front desk, his name is Josh (I love him btw, he's such a fun guy to talk to. He's also a CNA if you ever need a nurse and are staying at this hotel) saw me walking out to the car and made the most surprised facial expression and said "you really can walk that good right now!?" This boosted my confidence because Josh has seen a lot of people on walkers!
Also, my mother and my sister are coming out to see me tomorrow and stay until Sunday. I'm so excited to see them. They have been the most supportive of me so far, and I'm looking forward to us going out and really enjoying Florida. I also managed to cancel all the business trips I had this summer by claiming a medical injury and no one batted an eye. Set sails for smooth lengthening! I am actually considering potentially lengthening at home. This would reduce costs significantly and might make my life easier with having someone around (and not having to hire a nurse to do everything). I haven't decided yet but I know my family won't be against it, and would be glad to have me home. My only concern is the proximity to Paley if anything goes wrong. So far I've been able to stroll into his clinic and talk to a PA whenever I had a question about something. But then again, Paley is highly responsive to emails, and I can always fly out if anything is amiss. It's an idea, but I probably won't make that decision until I spend at least another week here.
Til next time!
