Thanks for your well wishes guys, I truly appreciate them and it certainly feels good to share this experience with you. I was in your same shoes before surgery and I know how desperate it feels sometimes to read a new and recent diary.
I was asked above how much surgery cost, as I said earlier I am not giving out numbers mostly because I don't know them myself yet. So far I have spent over $100k and still waiting for my anesthesia bill. As I said earlier, refer to the prices posted on this site, as they are relatively correct. The final price will vary based on whether your insurance covers all, none or some of the cost of the procedure, how long you are under the anesthesia (since the longer the surgery lasts, the higher the bill for anesthesia), meds, etc. It is meaningless to talk exact numbers. With dr R, you must plan to spend about $120K or so, in the event the insurance covers nothing. You should always plan for the worst case scenario because the last thing you need is worrying about money when you should be fully committed, both mentally and physically, to recovery.
As mentioned earlier, I would like to achieve 3 inches, but again I will only go as far as my body tolerates and so long as dr says its safe. I don't believe in setting goals for this procedure and achieving them no matter what. I think safety must always come first.
Rozbruch- Internal Femurs with Stryde
Todays updates so far:
I went to bed late last night, it was about 2 am. I took an oxy when in bed because my left leg was in pain, about level 4. I slept without interruption and woke up by my alarm at 830 am because I had to lengthen at 9. I was definitely sleepy and could have slept at least another 2 hrs. I am lengthening 5 times a day right now so I have timed the sessions in intervals: 9am, 12, 3, 6, and 9 pm. The lengthening sessions must be completed by midnight. On Tuesday I will start lengthening 4 times a day and so will start my first lengthening for the day a little later which would give me more time to sleep, this is assuming nothing else happens that prevents this from happening.
Today is day 3 of lengthening and I did wake up with tighter legs that need more warm up than usual and I expect this to get worse. As soon as I woke up and slightly moved my left leg, the pain kicked in, right now its at about a 1. I haven't taken any pain meds yet but PT is at 12pm so I will be taking an oxy at 11am in preparation. Not sure if I said this earlier but right now I do the PT on my own but I have contacted a private therapist to come in next Saturday. He was recommended by dr R and at this time I mainly want him to watch me perform exercises and correct my posture, and maybe add couple more exercises. I don't know if I'm pushing myself enough right now but I was planning to take it easier the first 10 days or so post-op just to give the body time to adjust to the impact of the procedure, especially since I have the luxury to do that now more than I will later as tightening significantly increases with each lengthening.
One last thing just to get this out of the way: when I was on the forum reading diaries, I couldn't help but feel and wonder whether it was a real patient diary. For this reason I am attaching the photo of my room on day of discharge. I may share X-ray photos in the future but for now this should at least make you feel more confident in this diary
Tiggy,
Couple of questions that I'm hoping may be able to help me manage leading up to my CLL.
1) How old are you?
2) How did you balance your career with this procedure? Did you have to take a leave of absence, quit your job, etc.
3) Have you told family, friends and co workers?
4) I know you mentioned you have family with you, but have you needed to hire an aide/helper through this process or do you have all of your needs met through family support?
Thanks!
Quote from: TheAlchemist on May 19, 2019, 05:02:38 PMTiggy,
Couple of questions that I'm hoping may be able to help me manage leading up to my CLL.
1) How old are you?
2) How did you balance your career with this procedure? Did you have to take a leave of absence, quit your job, etc.
3) Have you told family, friends and co workers?
4) I know you mentioned you have family with you, but have you needed to hire an aide/helper through this process or do you have all of your needs met through family support?
Thanks!
Hey Alchemist,
Sure thing:
1. Im 30
2. I am a student so this is summer break for me. I also quit my part time job.
3. Only the closest people to me know about this procedure. I do not care to tell anyone else because I do not owe anyone an explanation, unless my life decisions somehow impact them. If they notice the height change and make a comment, I plan to say Ive tried HGH and it worked for me. If they don't buy that explanation then its their problem, not mine. I am pretty certain the people I know don't even know LL exists anyway, so it should be pretty easy to sell the HGH explanation.
I see many people on this forum worry about what others will think. However, I was never that type of a person. I always did what I thought needed to be done and I knew that people who truly loved me would still be supportive even if they didn't share my views. All others do not matter at the end of the day. So my advice to those struggling with this is to follow what you believe is right. If others refuse to understand or otherwise condemn your choices, you should feel lucky to know who those people truly are and distance yourself from them. Its very simple really.
4. I have all my needs met through family support. I did not hire an aide because I'm staying with my family throughout recovery, so there is always someone near me. However, you absolutely need someone to be there for you and help. I can get up, fully weight bear and move around fine but even despite that I can't imagine cooking for myself or even transporting a plate from the kitchen to my bed, which is about 30 steps. So make sure there is someone there at least in the beginning. I will update the forum as to when I think I could be fully self sufficient when that time comes.
Hi.. tiggy, congratulations... your in safe hands a brilliant doctor...
I'm looking forward to your future posts ..
Panda 
Quote from: PANDA:BEAR.. on May 19, 2019, 05:56:38 PMHi.. tiggy, congratulations... your in safe hands a brilliant doctor...
I'm looking forward to your future posts ..
Panda
Thanks Panda
Quote from: tiggy on May 19, 2019, 02:00:45 PMYour post definitely set my mind at ease IFS, thanks for that. I didn't know dr R lengthens the nails 1mm in OR, thats so good to know. Its astonishing how 1 leg can feel pressure and pain after lengthening but the other has absolutely no response and feels normal. I am sure more surprises will come as I dive deeper into the process
Exactly, right. One thing that you will find through the entire CLL process is that the "happenings" between the left and right leg are constantly switching off. In fact, the only constant IS change with CLL. My left leg was so troublesome the first 2 weeks that I could barely put any weight on it; then my right leg started to harass me. As far as lengthening...same deal. After I would use the device, sometimes my left would fill tighter than my right and visa-versa. Either way; everything will balance out at the end as it is now for me at about 130 days post op! I'll check back in with you! So far so good.
Best,
IFS
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