precise 2.2 femurs w/ Dr. Assayag

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.

Quote from: femurs2022 on April 07, 2022, 11:27:01 PMDay -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.

Quote from: HeightJourney2021 on April 08, 2022, 01:27:27 AMDon'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.

Quote from: HeightJourney2021 on April 08, 2022, 01:27:27 AMDon'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.

Quote from: 6CMFemurs on April 08, 2022, 04:27:27 AMI 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.

Quote from: femurs2022 on April 08, 2022, 01:41:59 PMThank 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?

Quote from: 6CMFemurs on April 08, 2022, 05:57:33 PMYa 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.