Days +14 and +15
I'm very grateful that I am home! The flight/travel experience was very exhausting but went extremely smoothly. I requested wheelchair assistance at both ends. I flew southwest so there are no assigned seats. I was able to sit in the front row of the plane since you board first if you have a wheelchair, and just be wheeled to the seat, transfer to the seat and then they gate checked my wheelchair (and then the reverse process on arrival). The airport staff, flight attendants, and even the TSA staff could not have been more kind and helpful. I was able to check the ERC without any issues and then collect it at baggage claim like any other bag on arrival. I was really nervous about the travel process with a wheelchair but it went very smoothly.
Being home is interesting. I was so happy last time to get home after the initial surgery but this time feels different since I'm not ready to deal with all the questions about the wheelchair yet from people I know. For example, there is a work happy hour tonight and I keep getting texts asking if I'm going but I'm exhausted and still in a decent amount of pain and really don't feel like dealing with all the attention my wheelchair will attract. I think starting this weekend though I will work on getting outside more and hanging out with friends.
My pain during the day has improved significantly though pain remains an issue overnight. I do feel like I am making progress finally in terms of pain control. I continue to lengthen pretty slowly, 0.5 mm/day on left, 0.75 mm/day on right.
precise 2.2 femurs w/ Dr. Assayag
Quote from: femurs2022 on April 14, 2022, 07:49:08 PMYes second surgery! I did the first surgery on my left leg then a few weeks later the second surgery on my right leg. And thank you so much!!
Oh ok, got it! 
Did you do it for having less risk for PE? 
Hi femurs2022, congrats on getting the surgery!
Some questions:
How much partial weight bearing are you allowed to do? And are you allowed to stand without support when brushing your teeth/washing your face in the bathroom?
Are you taking any blood thinners?
Do you have any plans for scar care/scar treatment?
Thanks and I hope your lengthening is as comfortable as possible !
Quote from: scandinavian15 on April 15, 2022, 07:30:58 AMOh ok, got it! Did you do it for having less risk for PE?
No, more so just due to scheduling issues with COVID and a desire/need to do the procedure outpatient.
Quote from: canterk on April 16, 2022, 01:29:22 PMHi femurs2022, congrats on getting the surgery!
Some questions:
How much partial weight bearing are you allowed to do? And are you allowed to stand without support when brushing your teeth/washing your face in the bathroom?
Are you taking any blood thinners?
Do you have any plans for scar care/scar treatment?
Thanks and I hope your lengthening is as comfortable as possible !
Thank you so much! I can weight bear up to 50 lb on each leg. My weight was about 100 lb going into surgery. Since my legs are different lengths right now I don't do a lot of standing because it is hard to make sure my weight is evenly distributed.
Yes, I'm taking a blood thinner.
In terms of scar management, I ordered some stuff on amazon (silicone strips) but haven't really used it. I may start using them soon. I typically haven't had issues with scarring in the past thankfully. I think the only scars I would consider doing laser or some sort of scar removal for would be the one by my knee from the IT band release. Overall the scars are really minimal most would be covered by clothing.
"Your welcome! I'm only a little over 2 weeks in so not the most experienced patient but I think transferring in and out of the shower is probably the most dangerous since things can be wet and slippery and there are a lot of hard surfaces to hit if you fall. I think you can mitigate the risks by using a shower transfer bench and considering installing bars to hold onto. Also by having someone around to help as needed at least early on. Otherwise, wet floors are pretty scary on crutches or a walker but I'm not sure how to mitigate this other than avoiding them."
ty!! I might do a tibia rebreak someday with Dr. Assayag. I'm going to do gnail femurs in September with Giotikas. I am starting to think maybe I should get a bunch of non-slip rugs for the bathroom and put rugs everywhere to decrease chance of slipping (rugs might end up stinking though).
Today is day +24 I believe (if I'm counting correctly). My left leg is at 47 mm (by my calculations-- the ERC is a bit off b/c I started the left and right legs at different times) and right leg is at 12.75 mm. I do not have any major updates. I've settled into life at home and honestly other than the wheelchair and working from home life feels pretty normal. I've started to see friends again and we hosted a bunch of people for dinner a few nights this past week and it felt great to have life feel more normal. Thankfully we live in a relatively new apartment building so it is completely wheelchair accessible. The only thing in our apartment that I can't easily access are the upper shelves in the kitchen as well as the microwave but I have had no issues doing all the cooking (and dish washing....) for lots of people this past week.
I did have a bit of a scare with some calf swelling this week and I was concerned about a clot. I got an ultrasound and it was reassuring without evidence of a clot thank God. I'm not sure how it works with the other surgeons but with Dr. Assayag you have his personal cell number and can text him anytime. I didn't think this was super important at all prior to surgery but now going through this process I find this really makes things much easier and less stressful.
In terms of pain I am completely fine during the day as long as I take tylenol every 8 hours and celebrex every 12 hours. I accidentally forgot to take my tylenol this morning and I was surprised by how achy my entire lower body is. This resolved after I took the tylenol. I am also taking lyrica which has helped a lot with my nerve pain. I end up taking half an oxy usually in the late evening and another half an oxy if I wake up in pain.
I know people often wonder if they can work during limb lengthening. For me at least I have been able to concentrate and work very efficiently from home. I'm currently getting about 8 hours of work done a day and could easily do more if necessary. I will say if you are planning on working from home it probably makes sense to set up a home office of some sort. I'm used to working off 2 large computer screens all the time so the transition to just my laptop with one small screen has been the biggest issue.
Hi femurs2022,
Congratulations on starting your CLL journey and getting through the most difficult phase!
You mentioned that you weigh only about 100lb. So, are you able to use the walker at 1 month post-op?
Are you independent enough to use the toilet and shower on your own?
Also wanted to know if its recommended to lose as much weight as possible before doing CLL femurs with precise? OR will my body shed weight on its own after op?
Quote from: femurs2022 on April 24, 2022, 01:40:10 AMI know people often wonder if they can work during limb lengthening. For me at least I have been able to concentrate and work very efficiently from home. I'm currently getting about 8 hours of work done a day and could easily do more if necessary. I will say if you are planning on working from home it probably makes sense to set up a home office of some sort. I'm used to working off 2 large computer screens all the time so the transition to just my laptop with one small screen has been the biggest issue.
this is so good to hear! I am glad that you are getting work done!
Quote from: Growing Experience on April 25, 2022, 10:05:39 AMHi femurs2022,
Congratulations on starting your CLL journey and getting through the most difficult phase!
You mentioned that you weigh only about 100lb. So, are you able to use the walker at 1 month post-op?
Are you independent enough to use the toilet and shower on your own?
Also wanted to know if its recommended to lose as much weight as possible before doing CLL femurs with precise? OR will my body shed weight on its own after op?
Thank you! Yeah I'm about 100 lb. I'm not currently using a walker for more than a few steps per Dr. Assayag's recommendations. I think it is pretty surgeon dependent in terms of whether or not they allow you to use a walker or crutches while lengthening with precise nails.
I would ask your surgeon about recommendations regarding weight loss. I will say that I lost >10 lb after each surgery and I felt so much better as soon as I was able to eat more and get closer to a healthier weight. Not having an appetite but knowing you need to eat has been one of the more difficult parts of this process for me. Also the only times there have been any concerns mentioned about my bone regenerate was when my weight was <90 lb so I do feel like the weight loss/lack of adequate nutrition was contributing to that.
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