Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[standinguitar]

I had my quadrilateral leg lengthening surgery on July 3 (right) and July 23 (left) with Dr. Assayag in Baltimore, MD. I'm a man in his early 20's who grew up near Baltimore, so I decided to live with family during my recovery instead of staying at the HP house. I only created an account recently because I only found out about this forum a few weeks ago.

I was able to gain approximately 5.5 cm on tibias and 7 cm on femurs. I started from a height of 165 cm, so now I am approximately 177.5 cm without shoes or socks. I'm was a very inflexible guy coming into this procedure, so it was a miracle that I was able to lengthen for more than 10 cm in total. I've began walking with a walker, and after standing up and looking in the mirror, I think my height finally matches my frame.

As for my journey in the past few months, I would probably describe it as a mountain. Right after surgery was painful, but it was nothing that I had to endure around the midway point. Around 4-6 months in, I was doing almost 6-8 hours of physical therapy everyday, whether it be at home or at Sinai Hospital. The PT was for straightening out my knees and flattening my ankle. The pain was so excruciating for me that I would often shed tears everyday due to the sheer pain.

It's hard to describe into words, but it felt like all of my tendons, nerves, and muscles were being ripped from the inside. I could often feel blood gushing around my legs after a few hours of physical therapy, telling me that I was making small amounts of progress. I was a stubborn idiot for not taking painkillers; I was worried that I would develop some type of addiction or reliance on the drugs I was prescribed. Now looking back, I probably would've taken the medicine during some of the most excruciating moments.

At the time of posting this, it's been 7 months since my first surgery. As stated before, I'm able to walk small distances at a time (~50 meters) using a walker. I'm slow as hell, but it's progress. Using a walker is honestly a little embarrassing as it's clunky and catches a lot of attention, but it beats being stuck at home for days on end. Being able to go to cafes and work out at the gym has been working wonders for my mental health after half of a year shuttling back and forth between home and the hospital.

My knee is 99% flat when laying down, and my ankles are almost flat as well. My left leg seems to be lagging about a month behind my right leg because I had the surgery done on the left a month after the right, but I'm making progress everyday. My goal in the next month is to upgrade to crutches after Dr. Assayag grants me permission. In a few months, I would really like to be able to walk and balance more naturally so that I can buy some long leg pants at the mall. Around September, I'll need to be able to walk (not run) super naturally so that I can return to university so I can finish my masters.

As I mentioned before, I think that my height is finally perfect for my frame. My shoulders are very broad, but I don't have massively long arms. If I continued my lengthening, my arms would've looked a little weird on my body because of such long legs. I've lost a lot of anxiety regarding my body image as well. I used to compulsively pick at my nails and fingers due to my height insecurity, but all of those open wounds have healed in the past few weeks. My family has mentioned that they understand what I meant when I stated that my old height didn't make me "look like a real man". I've noticed how they now subconsciously treat me with much more respect as before even though I use a walker and rely on them for a few things. The difference that I've noticed from friends, family, and even strangers from when I was short to after becoming average height is staggering.

Going forward, I'll be posting my updates here for people who may be interested in quadrilateral leg lengthening, working with Dr. Assayag, or working with the PT team at Sinai Hospital.

[wes07]

What was the price for the Quad CLL surgery including nails?

[standinguitar]

Working with Dr. Assayag, the quad CLL cost $150k for both legs. It was $75k for each time I went into the operating room.

I didn't have to pay for staying at the HP house since I'm local, but even if I did, it would only be a drop in the bucket. However, I've been paying $75 3 times a week for almost 6 months for physical therapy, and that's also accounted for a few extra thousand as well.

Overall, when including insurance, copays, food, and the surgery fees, everything adds up to approximately $175k.

Although the price is super high, it's basically the price of paying for a four year US college education. The surgery is more impactful in today's world in my opinion lol

[Ted68]

Man, when you present your case you have to give surgery details, so people understand and treat you seriously...
So:
- What kid of LL technique you ve done ?
- Is not clear, but i assume you did tibia + femur only to one leg and 3 weeks later you did to the other one (very rare option !)
- If is intramedulary nail, how thick is the nail, 10 or 12 mm ?
- How was the lengthening rate of lengthening, per day and per segment ?
- Did you have any obstacle or complication ?
- You said you did 6-8 hours a day, every day PT... and also no painkiller. WOW !!... But actually nobody can do more than one hour a day PT, even with strong painkiller dose, because of the pain and tissues easily exhaust !!.... Are you a superman ?

Are you sure this story is real ?

[lucindaris]

weight-bearing nails are just better.

[standinguitar]

I apologize, I only joined the forum fairly recently, so I don't know much about what information to provide. Let me answer some of those questions:

-What kid of LL technique you ve done ?
I'm unsure about what you mean by technique, but according to the cost estimate I received from the hospital, I had: "FEMORAL LENGTHENING OSTEOPLASTY, ILIOTIBIAL BAND TENOTOMY, TIBIAL LENGTHENING OSTEOPLASTY, COMMON PERONEAL NERVE DECOMPRESSION, GASTROCNEMIUS RECESSION".

- Is not clear, but i assume you did tibia + femur only to one leg and 3 weeks later you did to the other one (very rare option !)
My first surgery was for the right leg. It was performed by Dr. Assayag in the beginning of July, and I had the rod and nails installed into my right tibia and right femur. I began lengthening a few days after the surgery on the right leg. My second surgery was at the end of July. I had the rod and nails installed into my left tibia and left femur. So yes, I suppose my procedure is the rare procedure that you mentioned.

- If is intramedulary nail, how thick is the nail, 10 or 12 mm ?
I have the thickest nail, the 12.5mm Precice2 nail, that allows for 75lbs of weight bearing.

- How was the lengthening rate of lengthening, per day and per segment ?
At the beginning of lengthening, the doctor permitted me 1.25mm of lengthening per day on each leg. This meant that I was lengthening 0.25mm 3 times per day for the femur and 0.25mm 2 times per day on the tibias. By the end of my lengthening, the rate was slowed down to 1mm per day. The slowdown was because I started showing decreased flexibility. During this time, I was lengthening the femurs 0.25mm 2 times per day and the tibias 0.25mm 2 times per day.

- Did you have any obstacle or complication ?
I experienced decreased flexibility during the lengthening. Right now, I am experiencing limited flexibility of the hamstrings, and my ankle flexibility is a work in progress. My ankle is about 5 degrees away from neutral with a straight leg. Other than that, I have no complications. I have been taking monthly x-rays with Dr. Assayag, and he has been telling me that I have above than average bone growth.

- You said you did 6-8 hours a day, every day PT... and also no painkiller. WOW !!... But actually nobody can do more than one hour a day PT, even with strong painkiller dose, because of the pain and tissues easily exhaust !!.... Are you a superman ?
Dr. Assayag and my physical therapists stated that a minimum of 3 hours of physical therapy and stretching are required for maximum lengthening and decrease the probability of complications. Even with three hours of physical therapy, I experienced a lot of flexibility issues. I was prescribed a painkiller by my doctor (oxycodone HCL 5 mg) by my doctor for any pain. The medicine was supposed to be taken two times per day for each time I had a physical therapy session either at home or at the hospital. I was always worried about the risk of addiction from using the medicine, so I only used the medicine once every few days when the pain was the worst during the last few weeks of lengthening. However, the painkiller never seemed to decrease the pain and only made me tired. Like I mentioned at the top, I cried almost everyday from the sheer pain of PT. Looking back, I would have asked for a stronger painkiller to help me overcome some of the pain. I haven't experienced any tougher challenge than the last few months: socially, mentally, physically. That being said however, the one thing that I've always been good at is being able to overcome my challenges. I wouldn't call myself superman but I definitely maxed out my endurance on my character customization screen LOL

I apologize for any confusion about my story and I hope that my response helped answer any lingering questions you had about my experience. If there are any further questions or doubts, I would be willing to provide further proof of my experience.

[standinguitar]

I don't have any experience with non-weight bearing nails, but the ability to walk around during consolidation has helped with my recovery tremendously. After not being able to walk properly for months, I ended up losing a lot of muscle and flexibility. Right now I'm able to rebuild both because of my weight bearing nails.

[Ted68]

I apologize, I only joined the forum fairly recently, so I don't know much about what information to provide. Let me answer some of those questions:

-What kid of LL technique you ve done ?
I'm unsure about what you mean by technique, but according to the cost estimate I received from the hospital, I had: "FEMORAL LENGTHENING OSTEOPLASTY, ILIOTIBIAL BAND TENOTOMY, TIBIAL LENGTHENING OSTEOPLASTY, COMMON PERONEAL NERVE DECOMPRESSION, GASTROCNEMIUS RECESSION".

- Is not clear, but i assume you did tibia + femur only to one leg and 3 weeks later you did to the other one (very rare option !)
My first surgery was for the right leg. It was performed by Dr. Assayag in the beginning of July, and I had the rod and nails installed into my right tibia and right femur. I began lengthening a few days after the surgery on the right leg. My second surgery was at the end of July. I had the rod and nails installed into my left tibia and left femur. So yes, I suppose my procedure is the rare procedure that you mentioned.

- If is intramedulary nail, how thick is the nail, 10 or 12 mm ?
I have the thickest nail, the 12.5mm Precice2 nail, that allows for 75lbs of weight bearing.

- How was the lengthening rate of lengthening, per day and per segment ?
At the beginning of lengthening, the doctor permitted me 1.25mm of lengthening per day on each leg. This meant that I was lengthening 0.25mm 3 times per day for the femur and 0.25mm 2 times per day on the tibias. By the end of my lengthening, the rate was slowed down to 1mm per day. The slowdown was because I started showing decreased flexibility. During this time, I was lengthening the femurs 0.25mm 2 times per day and the tibias 0.25mm 2 times per day.

- Did you have any obstacle or complication ?
I experienced decreased flexibility during the lengthening. Right now, I am experiencing limited flexibility of the hamstrings, and my ankle flexibility is a work in progress. My ankle is about 5 degrees away from neutral with a straight leg. Other than that, I have no complications. I have been taking monthly x-rays with Dr. Assayag, and he has been telling me that I have above than average bone growth.

- You said you did 6-8 hours a day, every day PT... and also no painkiller. WOW !!... But actually nobody can do more than one hour a day PT, even with strong painkiller dose, because of the pain and tissues easily exhaust !!.... Are you a superman ?
Dr. Assayag and my physical therapists stated that a minimum of 3 hours of physical therapy and stretching are required for maximum lengthening and decrease the probability of complications. Even with three hours of physical therapy, I experienced a lot of flexibility issues. I was prescribed a painkiller by my doctor (oxycodone HCL 5 mg) by my doctor for any pain. The medicine was supposed to be taken two times per day for each time I had a physical therapy session either at home or at the hospital. I was always worried about the risk of addiction from using the medicine, so I only used the medicine once every few days when the pain was the worst during the last few weeks of lengthening. However, the painkiller never seemed to decrease the pain and only made me tired. Like I mentioned at the top, I cried almost everyday from the sheer pain of PT. Looking back, I would have asked for a stronger painkiller to help me overcome some of the pain. I haven't experienced any tougher challenge than the last few months: socially, mentally, physically. That being said however, the one thing that I've always been good at is being able to overcome my challenges. I wouldn't call myself superman but I definitely maxed out my endurance on my character customization screen LOL

I apologize for any confusion about my story and I hope that my response helped answer any lingering questions you had about my experience. If there are any further questions or doubts, I would be willing to provide further proof of my experience.

Thats good, man.
So you chose Precice. Good choice !
Those 12mm nails are the most solid implants, so they are almost full bearing nails. You are so lucky !
Just keep us updated !

Good luck !

[standinguitar]

The Precice2 12.5mm have been extremely helpful, and I've felt their impact most in the past few months. Being able to walk, even with partial weight bearing, has been a breath of fresh air. Without these nails, I can't imagine my recovery process being extended for another 2-3 months. At that point I think I would go insane 💀

I started using the leg press machine as a part of my PT regimen recently. I look goofy on the machine struggling with even 10 lbs, but it shows just how much strength I lost in my legs as a result of my lengthening. I have less strength the more squatted I am, but I feel that my strength is slowly recovery day by day 💪