My story really began 23 years ago when I tripped on a rock in a parking lot. Who knew that such a simple mishap could lead to where I am today? My fall was caused by a giant cell tumor in my right ankle that had fractured the joint. This led to surgery to remove the tumor and a graft taken from my hip to “rebuild the ankle.” Two surgeries followed by several months of recovery, I was back on my feet, with limitations and with the knowledge that “someday,” I might need to have a fusion if the ankle joint deteriorated and caused too much pain.
My “someday” finally came after years of increasing pain, swelling, tripping and waking up from painful ankle spasms. I was tired of living in pain and being afraid of falling. I hated that I could no longer walk barefoot, (especially on the beach, which I loved) without going up on tiptoe. Most of all, I was worried that as I got older, it would only get worse. I was referred to Dr. John Kennedy at HSS to explore what treatments might be available. Dr. Kennedy discussed the options including an alternative to the ankle fusion that I had so dreaded, a procedure called ankle distraction arthroplasty that he and Dr. Austin Fragomen could perform.
When I met Dr. Fragomen I was instantly put at ease. He was so down to earth, professional and empathetic. He really listened to my concerns and fears. He explained the procedure and showed my husband and I the external fixator frame which to me, looked like something out of a Frankenstein movie. The idea of wearing a frame for 10 weeks, not being able to drive or get around by myself, of pain and the risk of infection – it was overwhelming. But as Dr. Fragomen answered my long list of questions, I felt that it was the right decision for me and I knew that he would take great care of me. And the idea that I would end up without any pins or plates or screws, that they would take stem cells from my hip and inject them into my ankle to help me grow new cartilage, was amazing. He also said they would release my Achilles tendon which would help me to walk better and not on tiptoe. Added to that, was the fact that I could be part of an exciting research study. I was determined to go through the procedure and be a success!
Waking up after surgery with the frame attached to my ankle was surreal, although I did think that the color scheme, with pink on top, was pretty cool. Having to wear the frame and navigate a walker and crutches through snow and ice during the winter provided its own set of challenges. During those weeks, my husband became a master at wound care while I developed great upper body strength from going up and down the stairs at home and at work on my butt! The physical therapy seemed endless and was at times excruciating, but the team I worked with was fantastic. They always motivated me and kept my spirits up. I got used to the odd looks from people when they saw the frame and the questions they’d ask, including one of my favorites: “At least you can take that off at night when you go to sleep, right?”
There were many difficult times, but with the incredible help of my husband, family and friends, I made the best of it. I even decorated the top of the frame with Disney car toppers and wrapped my crutches in twinkle lights for the holiday season. It was definitely a conversation piece and people laughed when I hopped by with my flashing lights (which also proved to be a great safety feature when walking at night or in a crowd).
The day the frame came off was an exciting milestone. When I told the operating room team that I wanted to keep the frame so that my husband could transform it into wind chimes, I’m sure they thought we were crazy. But that wind chime now hangs in our yard, and serves as a constant reminder of how far I’ve come. It inspires me to keep working hard so that I can continue to improve.
Today I am able to go for long walks with my dogs, take Yoga, Pilates and Spin classes. I am getting ready to do an 8K benefit walk. I’m more active then I’ve been in a long time. And on a recent vacation, I was able to walk barefoot on the beach, not on my tiptoe, and without pain for the first time in years. I know that I still have a ways to go and I like to think of my ankle as a “work in progress,” but I am no longer in constant pain and I can walk without the fear of always falling.
Dr. Fragomen is an excellent doctor and surgeon. And his staff is a pleasure to work with. From navigating through insurance issues, to scheduling tests and appointments, the office team has been a tremendous help. I am grateful for the Facebook page, which gave me the opportunity to share experiences with other patients, and I love the fact that whenever I have a question or concern, I can email Dr. Fragomen and he always responds quickly. I’ve sent him notes of milestones and photos of my progress along the way because I truly believe that he cares about me as his patient.
On my last visit to the office, a person in the lobby said to me, “you look way too happy to be going to see a doctor.” But the truth is I am always happy when I go there. To see how far I’ve come in a year and half is amazing. Thank you Dr. Fragomen for your wonderful care and support!