Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: femurs2022 on April 06, 2022, 10:00:50 PM
-
Introduction
Hey everyone, I'm doing femur lengthening with Dr. Assayag. I have gone back and forth on starting a diary but would have appreciated some more diaries from precise patients when I was doing research on the procedure (I read basically every patient experience I could find!!) so I think I will start one. Also it will be nice to have a record of this time in my life in the future. I stole the formatting for this post from a previous diary so thank you "belowthemean" and I hope it is ok I have borrowed your formatting!
I am doing staged femur lengthening with precise nails. I had my first surgery a few weeks ago and my second surgery last week. I'll make another post after my intro post about how things have been so far.
Basic Stats
Demographics: late 20s, female, USA
Starting Height: 153 cm (5'0.25")
Wingspan: not sure
Lengthening Goal: 5-8 cm
Starting weight: 102.8 lb going into first surgery, 100.2 lb going into second surgery (a bit higher with shoes/clothing on)
Starting Inseam: not sure
Staring Tibia-to-Femur Ratio: not sure
Starting Height and Lengthening Goal
I was 5'0.25 at my pre op appointment so I'm going to go with that for my starting height. My starting goal is/was 8 cm but I have planned from the beginning to get to 5 cm and then re-evaluate periodically from there.
Physical Shape
I would say I went into the surgery in decent shape. I had had a very difficult and busy month at work up until 24 hours prior to my initial surgery so was exhausted going into things. My upper body strength is probably above average for my age/gender but my flexibility is significantly below average. I did a decent amount of stretching pre op (about an hour a day for 3 months) but not sure if it helped at all.
Sports
None currently. I do a lot of biking and play tennis casually with friends. I played tennis competitively throughout my childhood through high school. Before COVID I would go skiing as much as I could but I haven't had the chance recently.
Flexibility
See above :)
Health Status
I think I'm reasonably healthy. I have a well-controlled chronic illness that may have some impact on my recovery but we will see. My pre-op labs were all normal.
My Backstory
I have known about cosmetic limb lengthening since the age of 12 and I have been determined to get the surgery since age 16. I can try to explain why. I was born at a significantly smaller size than would be expected for a normal full-term pregnancy (the medical term is SGA) and never caught up as one would expect throughout my childhood. I would say my height bothered me from as early as age 4-5 when people started commenting that my younger brother towered over me. My parents were offered growth hormone treatment but told best case scenario I would be 2-3 inches taller after 10+ years of daily shots at a cost of $100k an inch. I was a reasonably mature kid and made the decision multiple times with my parents to defer growth hormone treatment. I would make a different decision now but the data on the use of growth hormone for this indication just wasn't available 10-20 years ago when we made this decision. Anyway, from age 5 I would think about my height very frequently, multiple times a day. I was never bullied (I can't actually recall a peer ever making a negative comment about my height until I was an adult), always had a really great group of friends in school, did well in school, played sports, and got to travel around the world as a kid. But I thought about my height many many times a day. So fast forward to the age of 12, I would read old medical school textbooks for fun and came across the ilizarov method. I did some research online and decided that that was what I was going to do. My plan at the time was to do the surgery after my first year of college. I would actually say as a child my parents were probably more distressed by my height than I was so I knew they would be supportive if I could find a way to do this safely. I started talking to them about it after watching a grey's anatomy episode with them about a patient who got limb lengthening and had complications. I was in high school and about 4'8 at the time and decided that I would do the surgery if I was not 5'2 once fully grown (my predicted height based on my parents would be 5'6). Fast forward a few more years and I start college at around 5'. I strongly considered surgery at Hospital for Special Surgery during the summer after my first year of college. I was incredibly fortunate that my parents were willing/able to pay for the surgery. However, I ended up with plans for the summer and life just happened and I didn't do the surgery. Life went on, more school, then work and I really haven't had any block of time off since high school until now. So this seemed like the right time since I would like to have it completed prior to marriage/pregnancies. I know this is a long-winded explanation (will this website even allow me to post something this long?) but I think it is important for people to know where I am coming from. I can't think of any objective or tangible benefits I will get from the surgery (my career is on a pretty defined path, I have an amazing partner and my height never had any impact on dating for me anyway, I don't think I will be treated any differently by people if I'm 2-3 inches taller, I wouldn't say I lack confidence or that this surgery will give me more confidence or higher self esteem). But my goal is just to make height something I don't have to think about anymore.
Who Knows About This
My partner and a total of 3 friends. Plus my parents. Everyone else knows I had an elective orthopedic procedure but nothing else. I'm not going to lie if anyone asks me directly but I may say I don't want to talk about it if someone asks and not actually confirm to anyone I did this.
Cost of the Procedure
Prices are pretty similar to what is on Dr. Assayag's website. My parents were/are happy to pay for the procedure but it was important for me to pay for it myself even though I am incredibly grateful for their support (and they are my "emergency fund" if mine runs out).
How I’m Paying
Due to COVID we had the opportunity to pick up extra shifts at work. I worked about 30 extra shifts (16-24 hours each) over 18 months to cover the cost of surgery and an emergency fund. I already work 80-100+ hours a week so it was ridiculously hard work but for whatever crazy reason it was important for me to cover the cost myself. Dr. Assayag ended up being a significant cost savings over the initial hospital I planned on so who knows what I will do with the extra $.
Time Off Work
I work in healthcare. We are entitled to 3 weeks of vacation a year and 1-2 months of research time (which can be done remotely these days) a year. I never got to take any of that time off since 2019 because of COVID staffing issues. Technically until now I haven't had more than maybe the occasional 3 day weekend off since fall 2019. So I was able to cluster a 5 month block with no clinical obligations but the opportunity to pick up shifts or cover clinic if I feel up to it. I still have frequent meetings and constant emails but I can mostly work from home and attend meetings via zoom.
Why Dr. Assayag?
Like most prospective patients I did a significant amount of research into all cosmetic limb lengthening surgeons in the US but really ended up choosing based on gut instinct. My perspective on this is that all the surgeons in the US performing cosmetic limb lengthening are probably equally capable of implanting the nail and getting you safely through the initial surgery. My priorities when choosing a surgeon were:
1. A surgeon who does not mainly do cosmetic procedures.
2. A surgeon who works at an institution with a track record for limb lengthening.
3. A surgeon willing to set limits with me and not bend the rules/protocols too much. I wanted to do bilateral femurs as an outpatient procedure and avoid a hospital admission and Dr. Assayag was the first surgeon to flat out say he was uncomfortable with that which confirmed to me I had made the right decision even if it wasn't the answer I wanted to hear.
4. I also had a bunch of things about ICU capabilities, anesthesiologist vs CRNA etc.
So I made a very extensive spreadsheet with all the above details. I was leaning towards a different institution but saw some youtube videos with Dr. Assayag. So I decided to speak to him and it just seemed like the best fit for me. So that is how I ended up in baltimore even though technically it didn't win on my spreadsheet. As of now, I feel very confident I made the right decision.
Next Steps
If you made it this far I'm impressed! I'll summarize my experience thus far in the next few posts. I will likely bypass recapping the first surgery since it was a very easy recovery, but things have gotten more challenging (but still not too bad!!) with the second surgery for sure!
-
Please keep us updated, and we are supporting you. Notice that we both have the same doctor.
-
I'll back track a bit and try to document my experience thus far with the second surgery. Let's call surgery day, day 0.
Day -2
I arrived in Baltimore pretty late this evening and took an uber to the hotel. We are staying in Owings Mills, MD which is near one of Dr. Assayag's offices and Northwest Hospital where I had both surgeries. There are probably more exciting places in Baltimore to stay but this is where I stayed when I came for my consultation so it is where we have stayed for both surgeries. There is the option of staying at the hackerman-Patz house at Sinai hospital which is something I would probably recommend looking into if you are coming for surgery with Dr. Assayag since it is much more affordable than a hotel. I had looked into airbnb's but it was hard to sort out what was wheelchair accessible and what was not so a hotel with a handicapped room seemed like a safer though more expensive option.
When I arrived in Baltimore I think my left leg was about 35 mm lengthened. I was lengthening at a rate of 0.25 mm 3x per day. I had slowed the lengthening due to issues with nerve pain and numbness which actually occurred very early on for me.
Day -1
This morning I had PT with Moshe Roth who is a PT who will come to your home/hotel and has a lot of experience with limb lengthening patients. I would strongly recommend working with him if you do limb lengthening in Baltimore.
Otherwise, this was a pretty uneventful day. I ordered grocery delivery via doordash and got our hotel room set up and stocked with food/drinks/snacks. My experience after my first surgery was that I had no interest in cooking (and at least at our house I do all the cooking and that hasn't changed in the past few weeks) and mainly just ordered food delivery so this time I just ordered some frozen food and snacks to have on hand instead of lots of food we will end up throwing out.
Day 0
Surgery day! This time I was much less stressed because I had some idea of what to expect. I had surgery at Northwest Hospital again. When you get to the hospital you go to a registration area, get a name band and then sit and wait for a nurse to call you. Once the nurse calls you they take you to the pre op area and you get a hospital gown and IV placed and do a urine pregnancy test (maybe the guys get to skip this part). The nurses are all really nice. They were pretty confused the first time about why I was having limb lengthening surgery and wanted to be taller but this time they seemed to get it and one of the nurses even said she really wished she had done this when she was younger. I was worried a lot before the surgery about how I would be treated since this is a cosmetic procedure but all the nurses were very professional (and it helps that they all really respect Dr. Assayag).
After getting the IV placed I met with the fellow and signed the consent forms. Dr. Assayag came by as well and marked my leg. Then the anesthesiologist came by. It was the same one I had last time (who was amazing) so it was just a brief check in. They had to repeat a lab so that took some time but then they took me to the OR in a wheelchair. I'll just say here that I hate the experience of entering the OR as a patient. I'm used to being in and out of the OR all the time at work and it is such a normal place for me but it is a really weird feeling to be the patient in the room with all those people there just for your surgery.
Anyway, after surgery I woke up I believe in my hospital room. I had the option to do the surgery as an outpatient again but I asked to be admitted for the night ahead of time because I felt more comfortable with that. I was able to order lunch (the hospital food is actually not bad) and then PT came by and showed me how to transfer to the bedside chair which was really easy. I was able to use the bedside commode with help from the nurses. I'll note the nurses were very responsive and someone would come immediately if I pressed the call button. I had a decent amount of pain so was taking oxy 5 mg every 4 hours I believe which helped a lot. I did not need anything other than tylenol, toradol and oxy for pain and I would say my pain was very well controlled in the hospital.
Day +1
I did not sleep well that night because I can only sleep on my stomach and it was very difficult in the hospital bed to roll over to sleep that way. The next morning I woke up early and had french toast for breakfast. I had a lot of pain but didn't want to take oxy because I knew it would make me too sleepy to participate in PT. Eventually, PT came and showed me how to use a transfer board (I haven't used one since though), transfer to a wheelchair, and wheel around. They also showed me how to use a walker to get to the toilet. After that there was a lot of difficulty in getting me my own wheelchair. Basically, I would strongly recommend you just secure your own wheelchair before hand. I was then discharged to my hotel! I had been nervous about getting into the car but it was super easy to transfer from the wheelchair to the car and vice versa. Once I got to the hotel I was about to get into bed and rest which I did for the remainder of the night.
Day +2
Today was a pretty rough day. I was in a lot of pain which I was not expecting since I had minimal pain after the first surgery. It also was hard to go from being completely independent with crutches to needing assistance to get on and off the toilet. This was a pretty miserable day and the first time I actually realized that limb lengthening is actually pretty hard. I will say I would likely have had a very tolerable level of pain had I taken the oxy as frequently as I was able to take it.
Day +3
Another rough day. I did take the oxy more frequently (prob every 6-8 hours while awake) and it really helped when I took it. When I didn't take it I would have severe throbbing in my leg that made it difficult to do anything. At this point after my second surgery I felt completely 100% normal so it was a very different experience this time around. I was also so exhausted which made everything harder because I struggled to move my body at all since my upper body was so weak. By today I was able to get on and off the toilet myself though it was a painful, tiring exercise.
Day +4
I had PT with Moshe today. I had done minimal stretching over the past few days because I was so tired and in too much pain from my other leg. Let's just say my left leg was very tight. Today was a bit of a better day and I felt like I was finally getting some upper body strength back.
Day +5
I had a previously scheduled follow up appointment for my left leg with Dr. Assayag. I was really worried about getting in and out of a car but it was very doable. My left leg was I believe at 38 mm on x-ray at this appointment. I was able to start getting back to my usual routine of 3 hours of stretching daily on this day since I had some more energy. I was also able to shower finally and wash my hair which made me happy. It was very difficult to go from being totally independent in showering to needing basically complete assistance getting in and out of the shower.
Day +6
I had PT with Moshe again and it was helpful. This was actually the first day I felt a bit better, more like myself. I'm still in significantly more pain and so much more exhausted though than after the first surgery. My best friend who happens to live in Baltimore has been visiting every night which cheers me up (and allows me to shower :) ). It is still so weird though to need someone to help you with simple tasks that were so easy before.
Day +7 One week post op. It is frustrating to compare where I am now with where I was after the first surgery. Especially since I don't feel like I am making much if any progress day to day from a pain perspective. I am still taking oxy 3-4x a day, tylenol 3x daily, and lyrica 3x a day. My pain is very well controlled if I take the oxy but I worry a lot about the risk of addiction so wish I was off it by now.
I started lengthening my right leg today. Currently I am lengthening right leg at 0.75 mm/day and left leg at 0.5 mm/day.
Day +8
Today! More PT with Moshe. I am back to my usual stretching routine but now have 2 legs to stretch. It takes me about 4 hours a day to get through all the stretches I am supposed to do daily, I'm pretty slow since I am still so tired.
I'm going to start documenting my pain level to see if I am making any progress. right leg: 2/10 for about 6 hours after 5 mg oxy, 6-7/10 once oxy wears off until I take more. left leg: consistent mild burning pain in my lower leg 2-3/10. this would not require additional pain medicine besides tylenol and lyrica.
-
Day -2
I arrived in Baltimore pretty late this evening and took an uber to the hotel. We are staying in Owings Mills, MD which is near one of Dr. Assayag's offices and Northwest Hospital where I had both surgeries. There are probably more exciting places in Baltimore to stay but this is where I stayed when I came for my consultation so it is where we have stayed for both surgeries.
Don't worry, when you are lengthening with partial weight bearing nails, it doesn't matter how "exciting" the place is and the surrounding area where you are going to stay, because you will be in the room and building the entire time.
Also, why did you do staged lengthening surgeries just 3 weeks apart? Was it to reduce risk of pulmonary embolism? Because most people plan for staged lengthening surgeries well over 4 months apart, so they have one strong leg to rely on without using a wheelchair. The idea is to do surgery on leg 1, wait like 5+ months for it to be consolidated enough to fully weight bear on it, then do surgery on leg 2.
-
Don't worry, when you are lengthening with partial weight bearing nails, it doesn't matter how "exciting" the place is and the surrounding area where you are going to stay, because you will be in the room and building the entire time.
I disagree my friend!! LL is both a mental and physical game. Why sabotage the mental aspect of the game by sitting inside your room all day? As someone currently in the process of lengthening, I recommend going out to dinner or for a little ride with your partner or friends as often as possible.
@Femurs2022: As a native Marylander, I do admit Baltimore can be kind of boring, but the weather should be getting nicer now. See if your partner can take you down to the Inner Harbor or even just to a coffee shop or brewery in Hampden.
-
Don't worry, when you are lengthening with partial weight bearing nails, it doesn't matter how "exciting" the place is and the surrounding area where you are going to stay, because you will be in the room and building the entire time.
Also, why did you do staged lengthening surgeries just 3 weeks apart? Was it to reduce risk of pulmonary embolism? Because most people plan for staged lengthening surgeries well over 4 months apart, so they have one strong leg to rely on without using a wheelchair. The idea is to do surgery on leg 1, wait like 5+ months for it to be consolidated enough to fully weight bear on it, then do surgery on leg 2.
It was a little more than 3 weeks apart. I originally wanted to do both at the same time but then due to limitations on elective surgeries due to an increase in COVID patients I ended up discussing the option of doing one leg at a time as outpatient procedures so I could move forward with the surgery. That option ended up appealing to me. In hindsight, I think doing both at once would have been easier logistically.
-
I disagree my friend!! LL is both a mental and physical game. Why sabotage the mental aspect of the game by sitting inside your room all day? As someone currently in the process of lengthening, I recommend going out to dinner or for a little ride with your partner or friends as often as possible.
@Femurs2022: As a native Marylander, I do admit Baltimore can be kind of boring, but the weather should be getting nicer now. See if your partner can take you down to the Inner Harbor or even just to a coffee shop or brewery in Hampden.
Thank you, I'm looking forward to checking out the inner harbor area! Honestly, so far I have been pleasantly surprised by Baltimore! Also, this doesn't apply to most people but we keep kosher (though not as strictly as some) and have very limited kosher restaurants where we live. So it is a huge and very unexpected luxury to have a wide selection of kosher restaurants and be able to go out to eat and have so many choices. Thankfully I can get around easily in my wheelchair and transfer in and out of the car with ease so I have been able to get out and about which at least for me is so important to staying sane throughout this process.
-
Thank you, I'm looking forward to checking out the inner harbor area! Honestly, so far I have been pleasantly surprised by Baltimore! Also, this doesn't apply to most people but we keep kosher (though not as strictly as some) and have very limited kosher restaurants where we live. So it is a huge and very unexpected luxury to have a wide selection of kosher restaurants and be able to go out to eat and have so many choices. Thankfully I can get around easily in my wheelchair and transfer in and out of the car with ease so I have been able to get out and about which at least for me is so important to staying sane throughout this process.
Ya Baltimore definitely has a fantastic Jewish community! There is no shortage of good kosher/kosher style options!
Are you planning to stay in Maryland or are you going back home to lengthen?
-
Ya Baltimore definitely has a fantastic Jewish community! There is no shortage of good kosher/kosher style options!
Are you planning to stay in Maryland or are you going back home to lengthen?
I'm planning to go back home! I strongly considered staying here this time around just for the experienced PTs but I will have significantly more support at home and overall likely be much happier.
-
Day +9
Things are starting to turn around quickly and I feel much better. I think from an energy level and mental state I'm completely back to myself and I would for sure be able to go back to work (in a wheelchair) if I needed to as of today (I'm not going to though). I'm sleeping well, through the night excluding waking up once when the oxy wears off. Eating remains a challenge but I hope my appetite will improve soon since I know I am losing weight which Dr. Assayag told me to avoid doing (which happened after the first surgery as well and it took time to catch up).
I've gotten into a routine and do about 2 hours daily of dedicated stretching w/o distractions in 30 minutes blocks. I also stretch throughout the day while lying prone working on my laptop. I'll have some visitors this weekend which I am looking forward to though hopefully, I will still have enough time to get some work done as well.
Pain level: I have taken oxy twice today, once overnight and once this afternoon. My right leg is a 2-3/10 with oxy, 6/10 without. Left leg consistently 1-2/10.
-
I disagree my friend!! LL is both a mental and physical game. Why sabotage the mental aspect of the game by sitting inside your room all day? As someone currently in the process of lengthening, I recommend going out to dinner or for a little ride with your partner or friends as often as possible.
@Femurs2022: As a native Marylander, I do admit Baltimore can be kind of boring, but the weather should be getting nicer now. See if your partner can take you down to the Inner Harbor or even just to a coffee shop or brewery in Hampden.
Yes, if you are able to go outside and explore outside places while lengthening, then by all means do so. Usually Stryde (when it was available) patients and staged lengthening patients with one strong leg can do this. However, if you are lengthening bilaterally with the Precice nails, it's extremely difficult to explore outside, unless you have someone that can help you, drive you around, and push your wheelchair.
-
Days +10 and +11
I think I might have had some unrealistic expectations for my recovery based on my experience with the first surgery. Mornings are really rough and the pain is somewhat intolerable until I break down and take an oxy. I'll admit if I was less stubborn about taking the oxy I probably would be a lot less miserable. Pain is really my biggest issue by far at the moment. I welcome any suggestions of non-pharmacological methods of managing the pain since what I am doing (lots of icing, nightly warm bath, stretching) is clearly not working. Tylenol actually works the best for the pain (better than oxy by far) but for some reason, it lasts less than 4 hours for me and I can't take it that often safely.
It is not all bad though. I got out of the hotel a few times this weekend and the weather has been less dreary in Baltimore. It is actually easier in some ways to be out and about in the wheelchair compared to crutches and it is really easy to wheel myself even up inclines. And honestly compared to how I was doing last weekend I am in a much better place. I also get to go home this week which I think will be much better for me.
-
Days +12 and +13
I had my follow up appointment with Dr. Assayag and my left leg is at 42 mm and right leg is at 5 mm. The difference looks even bigger in real life (I'll try to attach some photos). I'll continue lengthening my left leg at 0.5 mm/day and right leg at 0.75 mm/day. I also need to work on eating more. After the first surgery, I found I had to basically double my caloric intake from my baseline to not lose weight very quickly (I think my body just needs the extra calories to make new tissue/bone). I truly felt like my full time job was just to eat all day. I'm struggling to even eat 2000 calories a day right now (and realistically I think I need to double that to stop losing weight) so I am losing weight quickly which I guess is impacting my bone regeneration. My goal is to increase my caloric intake back to at least 3500 calories a day by next week.
Pain remains a challenge for me but seems to be improving slightly on a daily basis. My energy level is good, I'm sleeping OK, and I'm able to concentrate and get work done efficiently. The biggest issues for me are just my lack of appetite and pain which I hope will improve in time.
I get to go home this week! I am so happy about this and so grateful I am able to lengthen from home. It has been really hard for me to be away from friends during this time and I'm ready to get home. I live either a long drive or short flight from Baltimore. I will share information on the process of flying while lengthening bilaterally with precise after my flight home.
(https://i.ibb.co/r4hjcd3/Screen-Shot-2022-04-12-at-12-50-02-PM.png) (https://ibb.co/qk8SWJC)
-
it's nice to see a journal from a female since most of these are mens.
how did you handle going to the bathroom right after surgery or the first few days after surgery? i see that most men can just pee in a bottle but the option isn't there unless youre born with a male parts.
how soon were you able to shower?
with the oxy are you getting oxycontin or something like percocet? I have concerns with my body getting used to those as well after a surgery like this.
what size nails were you able to get ?
-
http://www.limblengtheningforum.com/index.php?topic=69753.0
How much does Dr. Assayag charge for rebreaking tibias? Ex: if we only did like 2cm on tibias before and want to rebreak the tibias to go from 2cm to 5-6cm on tibias?
With precise 2
-
Thanks for posting this! In your experience, since precise 2 is not weight bearing, what are the life/daily chore situations that are the most dangerous and what can you do to mitigate the chance of an accident?
-
it's nice to see a journal from a female since most of these are mens.
how did you handle going to the bathroom right after surgery or the first few days after surgery? i see that most men can just pee in a bottle but the option isn't there unless youre born with a male parts.
how soon were you able to shower?
with the oxy are you getting oxycontin or something like percocet? I have concerns with my body getting used to those as well after a surgery like this.
what size nails were you able to get ?
For using the bathroom, for the first 24 hours in the hospital I used the bedside commode and the nurse helped me transfer from bed to commode. I definitely was too weak to do this myself. After discharge, at the hotel I used the toilet in the bathroom. I needed help for the first day or 2 to transfer from the wheelchair to the toilet but this was mainly just due to how the bathroom was set up and how tired I was. Within a few days I was strong enough to transfer from the wheelchair to the toilet without any help.
For showering, I was allowed to shower 5 days post op. I think this probably varies by surgeon I just went based on what my discharge instructions stated.
I was/am prescribed oxycodone. Percocet is just oxycodone + acetaminophen (tylenol). I'm personally not a big fan of meds that combine opioids and acetaminophen because if you take the med as prescribed you are likely underdosing the acetaminophen component and if the patient takes it more frequently than prescribed then you can easily overdose the acetaminophen. Obviously, do whatever your surgeon recommends but I personally prefer having the acetaminophen and opioid as separate medications which avoids the underdosing/overdosing problem.
I have 10.7 mm nails. I was worried my femurs wouldn't be wide enough for the 10.7 mm nails but Dr. Assayag reviewed my x-rays (well technically I got an EOS scan) pre op and assured me he could fit them.
I'm happy to answer any other questions you have as well :)
-
Hi! Is this the second surgery? I am a bit confused! I wish you an healthy and good recovery.
-
Thanks for posting this! In your experience, since precise 2 is not weight bearing, what are the life/daily chore situations that are the most dangerous and what can you do to mitigate the chance of an accident?
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.
-
Hi! Is this the second surgery? I am a bit confused! I wish you an healthy and good recovery.
Yes 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!!
-
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.
-
Yes 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! :D 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 !
-
Oh ok, got it! :D 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.
-
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 !
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?
-
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.
this is so good to hear! I am glad that you are getting work done! :)
-
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?
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.
-
I think this is day +30! I had a follow up appointment yesterday and my left leg is at 5 cm and right leg is at 1.6 cm. This was actually the first time the XR measurements exactly matched the amount I thought I had lengthened. I again have no major updates. Thankfully I feel like things are going smoothly. There was some concern that my right leg is at risk for premature consolidation so I have been told to lengthen at 1 mm per day instead of 0.75 mm per day. I continue my slow process of lengthening at 0.5 mm per day on the left though I may ask if I can increase that to 0.75 mm per day at some point since my nerve pain seems to have improved greatly. Pain wise I am doing much better. For pain management I'm currently taking celebrex 200 mg every 12 hours, lyrica 75 mg every 8 hours, and tylenol 1000 mg every 8 hours. I take about 2.5 mg of oxycodone most days (1/2 a pill) if/when pain interferes with sleeping or PT.
I'll try to upload some pictures of my x-rays below (I'm not the best photographer though). The left leg x rays are the first two.
(https://i.ibb.co/mGmpBrq/leftpa.png) (https://ibb.co/DtNdbPC)
(https://i.ibb.co/hC1gxBc/left.png) (https://ibb.co/52x1Xrk)
(https://i.ibb.co/2YbRYM1/right2.png) (https://ibb.co/h1qr1dJ)
(https://i.ibb.co/9WK6cs5/right.png) (https://ibb.co/sqxnbyY)
-
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.
ty!!! When you don't feel like eating much, what kinds of foods should you prioritize eating a small amount of for the bone growth and some vitamins? Not sure, I'm assuming calcium containing foods (ex: milk, chia seeds)? Or something else?
Ex: if don't have an apppetite and only feel like eating a small amount, what do you guys think gives you the best bang for your buck for eating just a small amount of food?
-
I haven't updated in a while but I'm back with an update :) I finished lengthening the left leg I think 7 weeks ago and the right leg a few days ago. I stopped at 62 mm and I'm thrilled with that. For a variety of reasons I am very happy I did not feel the need to go all the way to 8 cm. I'm allowed to fully weight bear on the left and partially on the right so I can walk very easily with crutches with an essentially normal gait. My range of motion on the left is actually better than it was before surgery except for my quads. On the right my hamstrings are tight and I can straighten my leg completely lying down but not standing (I'm almost there though). I'm still doing about 2 hours of PT/stretching a day on my own but now that I'm done lengthening I can feel the exercises get easier instead of harder every day.
I don't want to paint too rosy a picture of this surgery/process though. I had no idea going into this just how emotionally difficult it would be for me and I don't think I would have wanted to know. I can't really describe how difficult the past few months have been for me, I was profoundly depressed and anxious for the first time in my life. I hesitate to include this part but I did even have thoughts of suicide at one point. I think a lot of it was the opioids (which I did need for pain in order to sleep and participate in PT) since I am feeling so much better since I stopped them. Within a few days of discontinuing the oxy it was like everything was bright again (even though the first 48 hours without it I felt worse). There also were outside factors in my life as well that may have had some impact. I just don't want anyone reading this though to think that if you do the surgery in the US with precise nails you will breeze right through it. It is still difficult though I am not exactly sure why it is so hard. I thought once you get past the initial pain from surgery it gets easier but at least for me it only got much harder. I would not have gotten through this without significant support. I personally would strongly recommend if you are doing this surgery that you either have a very supportive partner or very supportive friends/family or both. I know some people do this on their own but I certainly could not have done so. I would also recommend making sure you completely trust your surgeon and feel comfortable with them. The fact that I trust Dr. Assayag was probably the one other factor besides having a supportive partner and supportive friends that got me through this. On a happier note, I am so happy with my new height and it has been so much fun ordering new clothes since all my skirts/dresses are too short now ;D. I think the end result was completely worth the suffering even if it didn't seem like it at the time.
-
Congrats! Glad you got through it okay ;D
Do you think you will return to your pre-LL athleticism?
-
Congrats! Glad you got through it okay ;D
Do you think you will return to your pre-LL athleticism?
Thank you! I don't see why I wouldn't be able to. Other than some muscle weakness on the left my left leg feels completely functional and normal. I'm hoping my right leg will get there as well within a few weeks.
-
Congratulations!
Are you using a walker or crutches? When did you start walking with support?
-
Congratulations!
Are you using a walker or crutches? When did you start walking with support?
Im using crutches. I was cleared to fully weight bear on the left at my appointment 5 weeks after I stopped lengthening on the left. That night I tried the walker but then immediately switched to crutches because I have never liked the walker. I’m mostly using crutches now, I only use the wheelchair in the bathroom after I take a shower because I’m scared of slipping on the wet floor right now.
-
Just wanted to provide a brief update. I stopped lengthening 2 months ago and I’ve been walking without crutches for about a month. My gait has pretty much normalized. I think it would be impossible for someone who doesn’t know me well to notice anything is off about my gait but people who do know me very well do notice a slight limp. I often actually forget I have had the surgery. I’ve realized if I’m not paying attention I just automatically walk up and down the stairs at work instead of taking the elevator. My only major issue is significant lower back pain when standing for prolonged periods of time (as in hours at a time, walking and standing still briefly is fine). I’m on my feet at work for >70 hours per week and it is very challenging to always have pain after prolonged standing. I also have aching in my lower legs and feet with standing. I’m hoping this improves soon since it really can be excruciating to stand for more than a few hours. I think I’m seeing some improvement but I’m not sure if it is just because I’m taking more breaks to sit down. I really haven’t been doing much PT at all since I’m back to work full time and have minimal free time but I’m working on stretching more at home on a daily basis. I’ll try to remember to post some pictures of my x rays.
-
Hi femurs2022,
Thanks for providing us with the latest update! Good to know that you've recovered well and you're able to work long hours while standing.
I believe you're at the 6th month mark (post op) right now. My question is - do you ever feel the nails or screws inside you? while walking up and down stairs, while sleeping on sides ?
Also, are you able to drive a car comfortably at this point?
-
Hi femurs2022,
Thanks for providing us with the latest update! Good to know that you've recovered well and you're able to work long hours while standing.
I believe you're at the 6th month mark (post op) right now. My question is - do you ever feel the nails or screws inside you? while walking up and down stairs, while sleeping on sides ?
Also, are you able to drive a car comfortably at this point?
You're welcome. I'm 5 months post op if I am counting correctly. I do not feel the nails/screws inside me. For a time I think I could feel the screws when I would lay on my side while sleeping but I haven't felt them in a few weeks. I don't feel them walking up or down the stairs. I would keep the nails/screws in indefinitely but I don't want to have any issues if I need an MRI someday. That said, I have no plans to get the nails out anytime soon. My femurs actually feel completely normal. It is just my lower legs (calves mainly) and feet that hurt sometimes (my feet feel fine if I wear supportive shoes). My back pain has mostly resolved thankfully.
I have been able to drive comfortably for at least 6 weeks.
-
I'm a little over 6 months post op so thought I would provide an update! I always wondered reading diaries when exactly a patient is able to walk and have it look and feel completely normal. I would say for me (keep in mind I only did 6 cm) it was exactly at the 6 month mark from surgery. My gait "looked" normal before that but it wasn't until 6 months post op that my legs and walking in general felt completely normal. Currently, I am able to walk as long as I want without my legs getting tired, I can walk and run up and down the stairs but sometimes hold the banister depending on what shoes I am wearing (I worry about slipping and breaking a nail). I'm able to run but it still feels and looks weird, I can sort of jump. I'm not really able to hop on one foot yet. I have no more back, leg, or foot pain. The only discomfort I have is sometimes my knees feel tight if I have been less active than usual. My range of motion is back to my baseline excluding my quads which are still somewhat tight. That said, I haven't done any sort of PT or stretching in over a month so I would likely have improvement in that if I would actually stretch.
A close friend asked me today if I would do the surgery again. I can't imagine ever being brave enough to go through this again (I can't even imagine even agreeing to have surgery to get the nails removed anytime soon). I don't think about my height at all anymore which was my goal so I guess you could say the surgery succeeded. Honestly, my life just feels completely normal and most of the time i forget I even did this.
-
Here is my 7ish months post op update!
I think the big change from 6 months post op is I can now run and it looks and feels normal most of the time. I don’t think I have any sort of physical limitations at this time. I can sprint and jump as well. I think it would be impossible to know I had any sort of procedure on my legs unless one were to look at x rays. My scars have mostly faded enough that I don’t think they are noticeable (my skin really doesn’t scar though, I had a bad burn on my hand that healed with minimal scarring and a large laceration on my leg that eventually healed without a scar).
I would say I’ve completely recovered excluding the fact that I do have some edema in my legs most of the time. It goes away when I have a day or 2 off from work but when I’m on my feet all day it comes back. It doesn’t bother me but it is something I notice.
People keep telling me I seem happier but I’m not 100% sure if it is related to the surgery or something else. It feels like doing this has taken a big weight off my shoulders. It’s also a weird feeling though because I don’t have any height dysphoria anymore and i cant really remember what it was like to have that so it feels totally crazy that I did this. Even though I know I had thought about it for a long time and had a really good reason to go forward with it.
-
Thank you for sharing
-
People keep telling me I seem happier but I’m not 100% sure if it is related to the surgery or something else. It feels like doing this has taken a big weight off my shoulders. It’s also a weird feeling though because I don’t have any height dysphoria anymore and i cant really remember what it was like to have that so it feels totally crazy that I did this. Even though I know I had thought about it for a long time and had a really good reason to go forward with it.
I got about two inches taller and I also feel a big weight is off of my shoulders, it feels great when I stand next to other adult men now. I'm still shorter but I feel alot better. I'm still lengthening a bit more but might stop soon
I'm thinking of doing precise 2.2 tibias with Dr. Giotikas then coming back to the United States and doing nail removal with Dr. Assayag in Baltimore. I heard that for nail removal, you have to recover for about a week. Where in Baltimore do you think you would stay if you did nail removal with Dr. Assayag?
I have some relatives a few hours drive from Baltimore that I might also be able to stay with but I'm not sure if it is better to stay in Baltimore when recovering from nail removal
-
Congratulations, Femurs2022! Thank you for sharing your experience!
As you posted, you flew back home when you were at Day +14 and +15, may I ask about the time required for visits/PT?
1. Did you need to come back to Baltimore frequently to check up with Dr. Assayage?
2. Do you have your PT in your local clinic? If so, do you feel confident about them compared to the PT who is more experienced with LL around Sinai?
3. How long do you have to do PT in the clinic every day/week for the six-month period?
My questions are mostly about time management for the six to eight-month course since my daily working hours are pretty long (WFH). I would appreciate any of your input!
Days +14 and +15
I'm very grateful that I am home! ...
-
Congratulations, Femurs2022! Thank you for sharing your experience!
As you posted, you flew back home when you were at Day +14 and +15, may I ask about the time required for visits/PT?
1. Did you need to come back to Baltimore frequently to check up with Dr. Assayage?
2. Do you have your PT in your local clinic? If so, do you feel confident about them compared to the PT who is more experienced with LL around Sinai?
3. How long do you have to do PT in the clinic every day/week for the six-month period?
My questions are mostly about time management for the six to eight-month course since my daily working hours are pretty long (WFH). I would appreciate any of your input!
Thank you!
1. I had to go back to Baltimore every 2 weeks during the lengthening phase. Since I stopped lengthening I haven't had to go back and I just get x-rays locally.
2. Yeah I had PT locally. I thought my PT locally was not very helpful. But I had worked with a PT in Baltimore with a lot of experience with limb lengthening prior to returning home so I just made my own stretching schedule with the exercises he taught me. I did a minimum of 2 hours of PT a day on my own and went to the local clinic for PT 1-2x a week.
3. I stopped doing PT in the clinic as soon as I stopped lengthening so around 3 months post op.
I was able to work from home within 2-3 days post op. I wasn't super productive but I could get by. Basically anything that needed to get done got done but nothing else. I went back to work in person as soon as I was using crutches which was around 3 months post op and had no issues working >60 hours per week. I did have both the time and privacy at work though to do my 2 hours of daily stretching in small chunks of time while I was at work so I didn't need to stretch once I got home.
-
Thank you! Your answers are super helpful. I appreciate you taking the time to explain.
-
Was there ever a point during the surgery where you would say the pain was intolerable?
-
Hello, I just thought I would post another update :)
I think I'm about 9.5 months post op right now from surgery. Other than being 6 cm longer my legs are 100% back to normal. Unless someone took an x-ray of my leg I don't think it would be possible to know I have had limb lengthening surgery. I've definitely gotten the last bit of flexibility back that I was missing in my quads. I've gone skiing twice so far this winter and it felt completely normal. I was sore each night but just the usual soreness. I didn't try anything crazy but I was able to keep up with my friends.
-
Hello, I just thought I would post another update :)
I think I'm about 9.5 months post op right now from surgery. Other than being 6 cm longer my legs are 100% back to normal. Unless someone took an x-ray of my leg I don't think it would be possible to know I have had limb lengthening surgery. I've definitely gotten the last bit of flexibility back that I was missing in my quads. I've gone skiing twice so far this winter and it felt completely normal. I was sore each night but just the usual soreness. I didn't try anything crazy but I was able to keep up with my friends.
congratulations!
-
Hello, I just thought I would post another update :)
I think I'm about 9.5 months post op right now from surgery. Other than being 6 cm longer my legs are 100% back to normal. Unless someone took an x-ray of my leg I don't think it would be possible to know I have had limb lengthening surgery. I've definitely gotten the last bit of flexibility back that I was missing in my quads. I've gone skiing twice so far this winter and it felt completely normal. I was sore each night but just the usual soreness. I didn't try anything crazy but I was able to keep up with my friends.
You are about 1 year post op right now from surgery. How are u now? Everything goes well?
-
1 year post op? I would like to see some videos of your walking
-
If you have recent imaging data please put it at this thread. Redact any information that could be used to dox you.