I gave this speech at LPA Speaker’s Night during LPA Nationals in San Diego in 2014.
I’m Chandler Crews and I have Achondroplasia.
I am currently a sophomore in college. I’ve spent quite a bit of time discussing and defending my choice to lengthen my arms and legs. One reason I get questioned so often is that there is so much misinformation about lengthening circulating among our organization. So I just wanted to share my experience and address some of the common things that have been said to me over the past few years about lengthening.
I started lengthening when I was 16—almost 17. My first surgery was at the end of August 2010 to lengthen my upper and lower legs with external fixators. I had my fixators removed in early April 2011 and was walking without any assistance by the end of June.
I lengthened my upper arms in early January 2012 with external fixators which were removed in August of that year. I moved into my college dorm the following week.
On May 8, 2013, I lengthened my legs a second time. This time I had external fixators on my tibias but the new internal Precice rods in my femurs. The external fixators were removed January 17 of this year. The Precice rods are still in my femurs and will be removed later this year.
“It is so painful! They have to BREAK THEIR BONES!”
I mean really…it’s not like the doctor brings a sledgehammer into the exam room and breaks the bones.
It is a controlled cutting of the bone in the OR. Also referred to as an osteotomy.
That’s the cutting of a bone. Osteotomies are not that uncommon. Pulling the bone apart to lengthen 2-3 inches over a three-four month period is the lengthening process.
30 years ago the lengthening process was six to eight inches at a time in one segment and six to eight inches in the other segment. Ex: six to eight inches of length in the femurs and then later another six to eight inches in the tibias. Now its all four segments lengthened at the same time and getting about two to three inches in each segment of the legs giving the same amount of length as before but with less complications.
“The pain is excruciating!”
The procedure is just not as painful as it looks. Most kids only take pain medication as needed for the first two weeks after surgery. After that, it’s usually just one pain pill before physical therapy to help relax so the can stretch farther. If it were really that painful, patients would be taking their prescribed pain meds.
EXPENSE AND INSURANCE
“It’s so expensive and insurance doesn’t cover it.”
For dwarfism, lengthening is not cosmetic and is covered by most health insurance plans. In my situation, I had United Healthcare and later Blue Cross. Both covered without any trouble or explaining or anything. If there had been an issue, the hospitals and doctor’s offices are very skilled in communicating the medical necessity with insurance companies.
“There is no medical benefit from lengthening.”
Part of the lengthening process is straightening the legs and aligning the hips. This takes pressure off the knees and also lessens the lordosis associated with achondroplasia thereby relieving pressure from the lower back. Before my lengthening, walking long distances was out of the question. My back and knees would be hurting before I could make it even a city block. Now I can walk at least two miles without stopping.—Unless there’s a Starbucks on the way.
“There are lots of complications: infections, non-unions, nerve damage, etc.”
There are and will be complications—just like there are complications from being born with dwarfism.
What is important is that a lengthening patient goes to a unique center that is well equipped and experienced in dealing with complications.
Infections are treated immediately with antibiotics.
Nerves are monitored closely and regularly so that if a problem begins to develop, a change can be made before any irreversible damage occurs.
“It takes 3 to 4 years of being in the hospital and not living your life.”
The entire process is only about 8-9 months per lengthening.
The lengthening phase takes about 3-4 months, which is followed by about 3-4 months of consolidation.
During the lengthening phase the patient is wheelchair bound but not confined to a hospital or bed. While in the wheelchair, I went out every day to movies, dinners, shopping, etc.
During the consolidation phase a walker can be used until the patient is allowed to put full weight on the legs. This is about 3 months.
After removal there is sometimes a 4 week period of limited weight bearing. With the new internal rods, once weight bearing is allowed during the hardening phase, the patient is allowed to continue activity as normal.
The internal Precice lengthening rods are removed whenever convenient after about a year.
“Parents who are interested in limb lengthening for their children just can’t accept that their child has dwarfism. Young adults who lengthen have a low self-esteem.”
If a young person has a low self-esteem, then lengthening is the absolute last thing they should ever consider.
It is a huge commitment and it doesn’t go well if the patient is not on 100% on board.
It takes a lot of confidence and the patient—not the parent—has to be able to work well with the doctors and therapists in a professional setting.
Even the very young kids who start at age 8-10 are very self-confident coming into it and emerge even more so.
THIS VS. THAT
“When an LP lengthens it’s the same as an African American person lightening their skin and that is just a slap in the face to LPs who like being LP.”
Well, this is a comparison that was presented as a reason that my mom should not use the word “lengthening” or post pictures of me on Facebook.
Some people even say things to me sometimes like “looking at your pictures is offensive to other LPs.”
Achondroplasia is a medical condition. It is not a race or ethnicity. I do completely agree that there is a certain “culture” associated with dwarfism in the dwarfism community, but lengthened LPs still have Achondroplasia even if we look a little different now. All the different diagnoses of dwarfism have different “looks” so to speak. So having Achondroplasia with a little bit longer arms and legs is no different than having a different type of dwarfism. Some of us were born with short trunks, and others were born with short limbs. We still all have dwarfism.
Diversity, in my opinion, is a good thing in an organization like LPA. Just because I lengthened, doesn’t mean I feel you should lengthen, just like I would never suggest you color your hair and get your ears pierced the way I have chosen to color my hair and get my ears pierced.
“LPs who don’t lengthen can do everything an AH person can do, so there is no real benefit from lengthening.”
I completely agree that before I lengthened I could always figure out a way to do everything my AH friends and family could do. However, I always had to be prepared ahead of time. I had to be thinking ahead –usually, I did this automatically. Actually, I still do, and it’s a great talent we LPs have—being able to creatively figure out a way to do anything in the world.
But one thing I can do now that I couldn’t before is have a face-to-face conversation with people while standing or walking.
Before lengthening, I was 3’10”, which is on the short side of Achondroplasia. Every conversation I had with anyone who was not sitting down was a conversation with their crotch! XYZ! This is annoying!
Also, I can now reach the gas pedals to drive a car without extensions and see myself in the mirror without standing on a stool to brush my teeth or straighten my hair, or using public restrooms without assistance. I can also take care of my self a lot easier now that I lengthened my arms.
But I would have to say that the biggest advantage I have received from lengthening is advantages of communication.
TO BE CONTINUED…
My life today:
I love that now I stand out because of my own actions and achievements—not because of out the way I look. I really enjoy being treated as a 20-year-old and not someone younger. Although the physical advantages of being a more average size are convenient, the most beneficial result is my new ability to communicate with others face to face.
Those of us who lengthen still have dwarfism. Someone with dwarfism who chooses not to lengthen can certainly lead a full productive happy life. It’s simply a personal choice that some of us have made.