WHAT TYPE OF DWARFISM DO YOU HAVE?
I have the most common form of dwarfism, achondroplasia (ACH). I was diagnosed at birth and am the only one in my family with the condition. 80% of individuals affected by ACH are born to parents without the condition. ACH is caused by a genetic mutation in the Fibroblast Growth Factor Receptor 3 (FGFR3) gene. In November 2021, the FDA approved the first drug to improve growth in children with achondroplasia.
HOW OLD WERE YOU WHEN YOU HAD YOUR FIRST LIMB LENGTHENING SURGERY?
I was 16, almost 17, and in my junior year (Grade 11 in the US) of high school when I had my first leg lengthening.
HOW TALL WERE YOU BEFORE LENGTHENING? HOW TALL ARE YOU NOW?
Before lengthening, I was at my mature height of 3’10”. Today, I am 4’11”.
After my first leg lengthening in 2010 (16 years old), I was 4’5¾” (136.5 cm). In January 2012, I lengthened my upper arms (humerus) 4 inches (10 centimeters). In May 2013, I went back for another leg lengthening where I lengthened another 6 inches making me the height I am today – 4’11” (149.86 cm)
WHO IS YOUR DOCTOR? WHERE DID YOU HAVE YOUR SURGERIES?
My surgeon is Dr. Shawn Standard, Head of Pediatric Orthopedics at the International Center for Limb Lengthening in Baltimore, Maryland. Dr. Standard has performed all of my orthopedic procedures to date. Aside from deformity correction (bowed legs) and limb lengthening, the only other surgeries I have had related to having achondroplasia are ear tubes.
DID INSURANCE COVER YOUR SURGERY?
Yes, in the United States, limb lengthening treatment for dwarfism is covered by health insurance. Limb lengthening is not considered cosmetic for dwarfism. Although the procedure itself is covered by insurance, sometimes insurance companies will not cover additional physical therapy visits. Unless your plan provides unlimited PT visits, it’s inevitable that you will run over. Institutes such as the ICLL (where I went) and The Paley Institute in Florida, are very familiar in handling this situation and communicating with insurance companies, etc. in order to try to get more coverage to prevent families from paying out of pocket.
Please note: I’m not familiar with coverage situations outside of the US, etc. Please consult with your insurance providers and healthcare team for further information regarding your case.
WHAT’S THE PAIN LIKE?
Honestly, the pain is very tolerable and well maintained! The most pain I was ever in was right after surgery (and honestly, that’s just about with any surgery that anyone has). Some days were harder than others, but I would confidently say that I had more discomfort than I did pain. Right after surgery, the surgeon and PAs find a regimen that works best for you.
ARE YOU BED RIDDEN AND IN THE HOSPITAL THE WHOLE TIME?
No. Absolutely not. If you were bed ridden during lengthening treatment, the success rates would not be what they are. Generally, you’re in the hospital for maybe 3-4 nights depending. Being active and moving is very important in the recovery process. You want to keep your muscles and joints moving whenever possible. Often times, the outpatient PT at the institutes are in the hospital so I think most people confuse that for actually being “in the hospital” and admitted.
HOW IMPORTANT IS PHYSICAL THERAPY?
I cannot stress this enough…PHYSICAL THERAPY IS THE MOST IMPORTANT PART OF THE ENTIRE TREATMENT PROCESS. Without physical therapy (and occupational therapy), limb lengthening is not a success. After surgery, you start PT right away in the hospital (less than 24 hours post-op). Once I was out of the hospital, I did physical therapy 5 days a week for 2 hours. Typically, that’s an hour of stretching and an hour of exercises. About a week or so post-op I also began hydro-therapy (pool) and would do that an hour each day – typically right after physical therapy. Patients are required to do their own daily stretches and exercises outside of PT with their therapists.
DID YOU HAVE EXTERNAL OR INTERNAL FIXATORS?
During my first lengthening, I had external frames on all four lower segments. Femurs and tibias. My second leg lengthening, I still needed some correction to my tibias so I had the external frames again (Taylor Spatial Frame) but had internal telescoping lengthening rods in my femurs. When I lengthened my arms, I had external fixators similar to the ones I had on my femurs my first lengthening.