Q & chAnswers

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Decision making

I chose to undergo limb lengthening because I knew I did not want to live all my adult height at 3’10.” In full transparency, I also wanted to be more able-bodied. It was not just about being taller but also more proportionate. Having longer arms, I can reach the top of my head (wash it easier, high ponytails, safely use hairstyling tools, etc.), sit a safer distance away from the steering wheel when driving, not have to alter sleeves, deal with feminine hygiene – changing tampons, wiping front-to-back, not needing to use a bidet.

When it came to height (lengthening legs), I didn’t want to rely on stepstools and other forms of assistance constantly. Yes, it was my “norm,” but it never felt like independence. I didn’t know it then, but being within face-to-face range of my peers was an outcome I never considered. At 4’11,” I’m still really short, but I’m what I call (for myself) a “comfortable short.”

For what it’s worth, I also felt like I was never in my own body. I felt like my energy was wasting time in the body it wasn’t meant to be in. I didn’t want to wait for the world to change to fit my needs; I wanted to take charge and change for myself and no one else. I’ve noticed within the dwarfism community, some may feel that when someone else with dwarfism changes or alters their own body, that it’s an insult to everyone with that “body type.” But it’s not. Just like everyone else in the world, our bodies are our own, and no one, even if you have the same diagnosis as them, should have any say in what you do or don’t do.

I was 16, almost 17 years old. I had my first surgery at the end of August 2010 and turned 17 that November.

Arm lengthening (2012) – 18 years old.
Second leg lengthening (2013) – 19 years old, 20 by time of fixator removal.

First, the main goal was to correct my severely bowed legs. Regardless of whether I had chosen to go through lengthening, it was inevitable that I would need leg straightening. So, that (straightening/limb alignment) was already in discussion. Beyond that, my goals included wanting to be what I considered more independent.

the procedure

My surgeon was Shawn Standard, former head of Pediatric Orthopedics at the International Center for Limb Lengthening in Baltimore, Maryland, where I had all my surgeries.

My first lengthening involved external fixators on both femurs and tibias. At the time, internal lengthening nails had not yet been developed, so I had external monolateral hardware on my femurs and a 6-axis fixator (Taylor Spatial Frame) on my tibias. See here for a medical illustration description.

The surgery involves osteotomy of the bone and internal nail or external fixator applied to both femurs and tibias to achieve the desired growth length. Since I was post-pubescent and my growth plates were closed, my treatment was able to be more ‘aggressive.’ Because of this, I achieved 3 inches of growth in both femurs and tibias, resulting in a total of 6 inches gained overall. My second leg lengthening involved the same process; instead, I had the internal nails in my femurs. Because I still needed some correction on my tibias, I did have the external frames again. See image for detailed description.

Source: https://www.limblength.org/conditions/dwarfism/

External fixators are devices that are attached to the outside of the body. The frame typically consists of metal rings or rods connected by small pins or wires that go through the skin and into the bone. After surgery, the patient or caregiver adjusts the device (usually by turning screws) a little bit each day to slowly pull the bone apart and allow new bone to grow in the gap. Some drawbacks with external fixators are that they can be uncomfortable, require careful cleaning to prevent infections, and might limit some activities.

Internal nails are metal rods placed inside the bone. After surgery, the nail is lengthened using an external remote control device that sends signals to the rod, causing it to slowly expand. This makes the bone grow longer from the inside. Benefits of internal lengthening usually include being more comfortable, having a lower risk of infection, and allowing for easier movement compared to external fixators.

I was 3’10” (116.84 cm). After my final lengthening in 2013-2014, I stood at 4’11” (134.62 cm) – the height I am today. Check out my interactive before & after gallery!

Overall, I have had six major orthopedic surgeries. Three were limb lengthening. 2 leg lengthenings, and one arm lengthening. Post my second leg-lengthening, I had scar revision (#4) on both femurs & tibias and then I had two hip surgeries (#s 5 & 6).

My first lengthening started in August 2010 with external fixators placed on all four segments (femurs & tibias) of my legs. I was in the hospital for about 3 to 4 nights. The day after surgery, physical & occupational (PT & OT) begins in the hospital room. I didn’t start lengthening, turning/adjusting the fixators until about a week after surgery. Recovery consisted of PT 5 days a week for 2 to 3 hours daily. In addition, I had daily exercises and stretches to do on my own.

The lengthening took about three months/12 weeks, give or take. Every day of lengthening equals about a day or two of consolidation. With my turn schedule for my upper (femurs) and lower (tibias) fixators, I was lengthening about 1 millimeter each day, which meant I gained an inch in height every two weeks. By the time my bones were consolidated enough for the fixators to be removed, it was April 2011. After removal, I had one month of no weight-bearing. Once I was cleared to fully weight-bear, I did have to re-learn how to walk, so to speak. I used a walker for about two weeks, then two quad canes for about a week, then down to one. By June, I was walking unassisted.

For my second lengthening (arm lengthening), I had fixators placed in January 2012 and removed in August. This time, I only had fixators on my humerus, which meant I was mobile (able to walk, dance, etc.). Because you don’t bear weight in your arms, the consolidation phase can be slower as weight-bearing tends to help bone consolidation. As for the physical therapy, I did PT 2-3x a week. After removing my fixators, I had about a month of no heavy lifting, pushing, pulling, etc.

My second leg lengthening (third lengthening overall), including the physical therapy, was similar to my first. Surgery was in May 2013, and the only difference was I had internal nails in my femurs. I needed external frames on my tibias again because some correction was still needed. This meant the only “removal” date that mattered (to me) was when the external fixators would come off. With the internal nails, they stay in the bone for about a year. My external frames were removed in January 2014, and in October, the internal nails were removed when I had my bilateral scar revision.

I have done two AMAs on Reddit related to my experience with limb lengthening – check them out here (2019) and here (2024), and follow me on Reddit!

5 Comments

  4. In your “before” pictures, your legs look like they might cause you pain. Has that resolved with the surgery or was the procedure more cosmetic?

    Reply

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