Challenges, Not Limitations
My name is Keely. I have scoliosis that required corrective surgery. My story is one of struggles and triumphs; challenges, but never limitations!
The first chapter of my spine story began in St. Louis when I was diagnosed with Scoliosis at age 15. I was your typical teenager: active in school and with friends, with no sign of any health problems. My spinal curves were never noticed during school screenings, so I was quite shocked when my pediatrician told me my spine was shaped like the letter “s.” The curves were significant and would require seeing a scoliosis specialist.
The specialist, Dr. James Merenda, did his best to educate me and my parents about scoliosis and our treatment options. Because my upper curve (thoracic spine) was 36° already, he recommended wearing a Milwaukee brace for 23 hours a day in an attempt to stop the curve from reaching the surgical category (40-45°). Wearing this type of brace as a high school student was not fun! It extended from my chin down to my pelvis with a leather pad that pushed against my rib cage. It was hard to dress over and around it. I actually wore maternity clothes in an attempt to disguise the contraption. It was also not easy to sleep while wearing that brace. Thankfully, though, the brace did its job. In the first year of wearing it, the brace corrected the upper curve down into the mid-20° range. The lower curve was corrected some as well.
After two years, the brace was discontinued and I thought that was the end of scoliosis complicating my life. That spring, however, my mom noticed my back while we were at the beach. My right shoulder blade was sticking out much more than the left. It looked like the curvature of my spine was worse….. a lot worse.
We went back to see Dr. Merenda and learned that the upper curve had progressed to 54°. Surgery was needed to prevent the curve from getting worse. It would involve anchoring special rods and hooks to my thoracic spine from T4-T12. The implants were designed to apply correcting forces and to immobilize the spine until the vertebra are fully fused and healed. Dr. Merenda and his nurse, Pat Kostial, prepared me for what the procedure would involve and what to expect for recovery. The surgery was scheduled for that summer, just after my 17th birthday.
Fortunately, my surgery and recovery were uneventful. My hospital stay lasted about a week. I participated in physical therapy to help me get back on my feet again. Even though there was pain and discomfort with healing, I was determined not to miss summer camp just a month after surgery. My senior year of high school came with some activity restrictions while the fusion took hold. Just six months after the surgery, Dr. Merenda determined the fusion was solid enough to lift my restrictions. So, I continued to live my life and pursue my dreams.
I worked as a nanny the last semester of high school for a fun group of kids. They secretly schemed to introduce me to their uncle on a blind date to an amusement park. He later became my husband, but first I moved to Arizona for college and earned a double major in Media Communications and in Business Management with a minor in Marketing. I moved back to St. Louis for graduate school and to marry my husband. I earned a Masters degree in Education and a Montessori teaching certificate. I taught for six years, then worked for an Internet advertising agency before accepting a role as Director of Operations for an export company. I was thrilled for the opportunity to travel internationally for business.
In addition to working with kids and traveling the globe, I was able to live an active lifestyle. My hobbies included mountain biking, photography and videography, snow and water skiing, back packing, and I even taught swimming lessons. I would have an occasional muscle spasm, or minimal back pain, but nothing that kept me down for long. For about 10 years I didn’t have any major issues with my back.
When I reached the age of 26, things took a dramatic turn for the worse. I caught a painful and debilitating intestinal infection called Clostridium-Difficile (C-Diff) while caring for my ailing grandmother. It stopped me from being able to work and travel and ultimately led to some permanent disabilities. I needed four rounds of antibiotics and intermittent stays in the hospital over the course of that year. I had a complication from one of the medications that caused peripheral neuropathy and subsequently developed piriformis syndrome, and sciatica. Those things included severe leg and hip pain. I worked with many specialists over the next 14 years trying to improve the pain and dysfunction. At the suggestion of one of the neurosurgeons, I tried every non-surgical remedy available: chiropractic care, acupuncture, massage, physical therapy, medication pain management, you name it. Many of those things did help, but the pain persisted.
My husband was offered his dream job at Microsoft, so we relocated to Seattle. I established my care with a new set of specialists and learned about new and different treatments there.
Then my right foot began to hurt so badly that walking on it was too painful. Doctors suggested it was related to the scoliosis and the asymmetry of my body leaning more to the right side. I underwent a tri-correctional bunionectomy to correct the misalignment and deformity in my foot. That surgery also involved a technique to restore the cartilage in the two small bones on the bottom of my right foot. Following this surgery, I awoke with pain far worse than normal. Because of the heightened sensitivity of my nerves, I had developed a rare condition known as Reflex Sympathetic Dystrophy (RSD). My nervous system was already traumatized by the inflammation from existing neuropathy and sciatica. The foot surgery had overloaded my system and caused the sympathetic nerves to malfunction. I was stuck in a “loop” of intense pain. I was hospitalized and doctors used a nerve block for four days to help calm and reset my body’s perception of the pain from the surgery. My foot healed and I got back to my regular routine of physical therapy, chiropractic care and pain management for my ongoing back and leg pain.
More hardship came the summer I turned 28. I awoke one day with unbearable pain in the middle of my back at the base of my spinal implants. After consulting with specialists, we discovered that one of the hooks that anchored under the vertebra was protruding into my spinal canal and blocking it by about 40%. My spinal cord was snagged on the protruding hook and had developed a painful cyst. To me, the pain felt like a piranha gnawing on my spine. I spent nine months in a wheelchair. Because of my medical history, three of the orthopedic spinal specialists I met with were not willing to risk treating me. I finally found a spine deformity surgeon at the University of Washington who was familiar with my spinal implants and was willing to remove them. He determined that my spinal fusion from my teen years was solid, so I would not need to have additional implants placed. My scoliosis implants were successfully removed.
Because of another RSD reaction, my postoperative pain was significant. While it took almost two years to fully recover from this latest surgery, I was able to resume walking within just days of the surgery. Walking was actually what I did throughout the day to cope when my pain became unbearable. During that time, I found that the cold, damp Seattle climate was not helping me recover. I convinced my wonderful husband to find a new job in Arizona and we relocated to the Phoenix area.
Once again, I found myself establishing new relationships with physicians, therapists and healthcare practitioners who would take over my care. My new pain management specialist, Dr. Michael Carlton, favored blending holistic and traditional methods to help manage pain, allowing his patients to eventually wean off their medications. I enjoyed many therapies including cryotherapy, a float tank, naturopathic remedies, active release technique (ART), nutrition counseling and more.
At one of my appointments, I completed a survey that asked, “If you weren’t in so much pain, what would you be doing instead?” This was an enlightening moment for me! My answer was, “Flying airplanes.” Years before, I had dreamt of being a fighter pilot and started pursuing a career in aviation. When the military turned me down because of my fused spine and scoliosis, I gave up on that dream. The questionnaire in the doctor’s office planted a seed in my mind. Resuming my goal of flying would give me something to focus on and aim for. At that same clinic, I started listening to motivational speakers during my float tank sessions. One of the lessons talked about embracing your pain instead of fighting it or waiting for it all to be gone. What could pain teach me? How could my pain serve me well? That was a life changing revelation for me. I was just existing, what if I learned to thrive in spite of my pain?
On top of it all, for 13 years, my husband and I had dealt with infertility. I had been diagnosed with polycystic ovarian syndrome, fibromyalgia, interstitial cystitis, hyperthyroidism and ultimately Hashimoto’s Thyroiditis, an autoimmune disorder. Doctors explained that with all the medical issues, my body instinctively knew reproduction wasn’t ideal. So, when we moved to Arizona we decided to pursue becoming foster parents.
After completing the training and licensing process, we welcomed a tender-hearted seven-year-old boy into our home. He wanted a brother so we suggested he should start praying for one. We were thinking soon another foster care placement would be in our future. Instead, to our complete surprise, I got pregnant! We were delighted but I also had concerns about what my medications might do to the baby and how my back would tolerate the abdominal growth from a pregnancy. Fortunately, my doctor was very attuned to this and assured me that the medications would not harm the baby. My spinal specialist took new imaging of my spine to ensure I was structurally sound to support a pregnancy. Long story short, my pregnancy was wonderful! The hormones produced in preparation for delivery were truly the best pain management “therapy” I’ve ever experienced. Our son was born on schedule, healthy and happy. Then the following year we were privileged to be able to adopt our foster son who was 10-years-old by that time.
After settling into my new role as mom to my two wonderful boys, I began thinking more and more about resuming my dream of becoming a pilot. I worked with my doctor over an 18-month period toward that goal. I started with routine physical therapy to strength my core and then transitioned to Pilates and weaned off my medications. While my pain didn’t go away completely, I found that I could live with it and support my body through a healthy, toxin free diet, regular exercise and chiropractic care. Overall, my inflammation decreased and I could tolerate my pain without medication.
Then at the age of 40, I passed an FAA medical exam and started my flight training. Within 18 months, I earned my pilot’s certificate. I joined the Ninety-Nines, an organization of female pilots who help to promote women in aviation. I also joined Angel Flight West and started flying volunteer missions to transport patients to and from medical appointments. Doing this has given me such a sense of satisfaction. Not only have I fulfilled my desire to fly, but I have combined my experience as a patient to serve others who need medical care. Often, I’m able to share my story about scoliosis and chronic pain as an encouragement. When others hear my story and then learn that I’m now a pilot, they see that there is always hope.
Not only am I volunteer pilot, but I am also a volunteer bus driver. I earned a commercial driver’s license so I could drive the busses that transport campers for a summer camp in northern Michigan. I currently serve as a trustee on the board of that Christian camp and volunteer doing other odd jobs like painting, light maintenance and even serving as a camp counselor. I also drive the church/school bus for the field trips for the school my boys attend in Arizona.
Today, I am not pain free. I still have chronic pain, but I’ve discovered I can live with it! I have learned how to ignore my pain and press on. I find that if I do too much, my body fights back. Listening to my pain is just as important as ignoring it. I’m still learning that delicate balance. Because I do things I love, I can better tolerate my pain because I am enjoying life. But, by doing those things, I am also burning through my limited resources of energy. It is important for me to pace myself, embrace my limits and allow myself time to rest and recharge.
The past six months have been marked with new challenges. In the spring, I experienced a sudden, unexplained onset of neck pain and headache. Several MRI’s discovered that one of my cervical vertebrae was inflamed and bleeding internally. My neurologist and a neurosurgeon aren’t even sure why. After a few months the inflammation decreased to a small cyst in the vertebra. I was able to drive the boys in my pickup 2,000 miles to Michigan with our fifth wheel in tow. I enjoyed a full summer at the camp where I enjoy volunteering and then I drove the 2,000-mile journey home, camping along the way.
In August, just one week after returning home, I was rear-ended by a distracted driver. I was taken to the emergency room by ambulance on a backboard because I suffered injuries to my neck, back, hip and shoulder. Lying on the gurney in the overcrowded hallways, I asked once again, “What can this pain teach me?” I knew from experience that I could handle whatever the future holds. What a blessing that nothing was broken. Doctors estimated it would take eight weeks to heal from the soft tissue injuries. The good news was that I was benefiting from, and responding well to, weekly trigger point injections, chiropractic adjustments and massage.
Then, exactly five weeks after that accident, I was hit by yet another negligent driver! I suffered additional injury to my neck, including disk bulges. Doctors now estimate my recovery will take six months. While I’m disappointed to be in more pain, and to be facing more challenges, one thing I know is that everything is temporary. Tomorrow could be worse, but tomorrow could also be better. I will continue to move forward toward healing and focus my energy on resuming the activities I love. When the day comes that I can no longer do activities like flying, driving and traveling, I will develop new interests and find other things to occupy my time. The world is full of endless opportunity, if we choose to see it that way.
I hope by writing this chronicle of some of my challenges I can encourage others. We all get knocked down at some point. It’s what we do with the challenge that matters. The important thing is to keep putting one foot in front of the other. I found that technology and treatments change for the better with time. What wasn’t possible before becomes possible later. Don’t give up and don’t lose heart. As a patient, always do your homework. Research the problem, procedure, treatment and medications. Ask questions and seek those who are truly experts in their field. If you don’t like or agree with your doctor, get a new one. Be your own advocate. A doctor or treatment is a tool and a resource but you are the captain of your own ship. At the end of the day you have to live in your body. It’s up to you to wisely and carefully determine for yourself what it best.
I also found that being in a support group, or community or church group, has been very helpful for talking to others going through similar problems and hearing how they’ve coped. We aren’t meant to live life alone, and we don’t have to struggle in isolation.
The main reason for my continual hope is my friendship with Jesus. Without that relationship I’m not sure I would see pain as a gift. I have an amazing life because of pain and in spite of my pain. The lessons I’ve learned are because of my pain. My outlook in life is because of my pain. Adversity is an opportunity for growth and change if we choose to see it as such. Despite all I went through, my faith has kept me and my family strong. I am blessed to live this life. I am grateful for the struggles and challenges because they have made me who I am. I am thankful that I can use my life, my story and my crooked body to bring life and healing to so many others.
Be encouraged! Your challenges don’t have to be your limitations.
San Diego Spine Foundation would like to thank Keely for sharing her inspirational story.