Amy Fairbanks: Patient Point of View
Hi, I’m Amy Fairbanks and I was diagnosed with a vascular malformation. I went from patient in October of 2010 to a public relations intern in June of 2014. Here is my ACH story.
Have you ever woken up and felt like your arm was asleep? To most people, this may seem like a common occurrence. I thought so too, until one day a tennis ball-sized knot appeared on my left bicep. I had complained to my mother for about two weeks before my knot became visible. I was an active 17-year-old athlete in high school, so being sore was a common symptom for me.
However, once my knot appeared, I went to the clinic and saw our family doctor. He believed the knot to be an infection; I was given antibiotics and told to return in a week if my condition was not significantly better. My knot grew larger and I returned in three days.
I was sent to Fort Smith, Ark. for an MRI. My doctor called the next day and insisted we come back. He refused to reveal my results over the phone. Upon returning to the hospital, I was shown the MRI. My eyes automatically went to the white mass on the screen. My doctor turned to me and explained that because of my young age and the location of the mass, he believed it to be cancerous. I will never forget that feeling: my heart sank and tears began to fall.
“Without the correct diagnosis from ACH, I was informed that I could have been subjected to countless surgeries as an adult trying to determine the true disorder.”
I was at Arkansas Children's Hospital within two days. I first met with Dr. Richard Jackson, a surgeon, who observed my mass and insisted on a biopsy the next morning. We agreed to this and got a hotel room in Little Rock for the night. Later that evening, my mother received a call from Dr. Jackson. He asked if we would be willing to meet with a vascular specialist the next day before the biopsy.
The next morning, I met with Dr. Charles James, a radiologist. He was positive that I had a rare condition known as a
vascular malformation. Vascular malformations are basically veins that do not work properly. In my case, blood was not able to flow through the vein correctly and blood would pile up in one area causing blood clots would form. If I were to take a large impact to the area, those clots would be knocked loose and could flow to my heart.
Dr. Jackson asked if we would allow him to perform a procedure known as sclerotherapy. I would be put to sleep and they would inject special medicines into the mass to try and "kill it" in a sense. I had my first sclerotherapy Nov. 11, 2010. Three months later the mass returned; however, there were minor improvements. Because of these, Dr. Jackson asked if we would be willing to try the procedure one more time.
The goal was to avoid surgery because the vein was located so closely to the nerve in my hand and intertwined within my left bicep. I had my second sclerotherapy June 14, 2011. Once again, my mass returned. I returned to ACH and met with my current doctor, Dr. Richard Nicholas, who agreed to perform the surgery to remove the vein. I was informed that there could be adverse side effects: I could risk losing the feeling in my left hand, full extension of my arm and could experience a deformity in the appearance of my left arm. I wanted to return to school and sports with my friends and my active life! I was 18-years-old when I underwent surgery on Nov. 17, 2012.
“Everyone I met at ACH greeted me with a smile and was truly happy to help me with anything I needed. I believe I was in the best hands with Dr. Nicholas as my physician.”
I remember waking up in recovery with Dr. Nicholas standing over me telling me to move my fingers. I could barely move them, but it was enough to let him know that after the medicine from surgery wore off I would be fine. Dr. Nicholas removed my vein, but had to take a good amount of my bicep with it. He didn't think I would regain full extension of my arm. I was in a cast for six weeks and then attended physical therapy for 12 weeks.
Nov. 19, 2012 I had an MRI and MRV performed at ACH. My results showed no regrowth or new growth of the malformation. Dec. 4 was my two-year checkup with Dr. Nicholas, who was pleased with my recovery and released me. Although he does not think the malformation will return. He advised that he would like me to check in with him when I plan to start having children due to fluctuations in hormones that could cause a reoccurrence during pregnancy.
I am now 20 years old and a senior in college. I have full extension of my left arm and only a slight weakness due to muscle loss. Aside from the scar down my upper left arm, there is no other evidence of the malformation.
This experience helped me to appreciate my health and the simple things we sometimes take for granted. Everyone I met at ACH greeted me with a smile and was truly happy to help me with anything I needed. I believe I was in the best hands with Dr. Nicholas as my physician. He was happy to explain any questions I had and was confident he knew he could do the job. It is impossible to feel anything but blessed while you are at ACH.
Without the correct diagnosis from ACH, I was informed that I could have been subjected to countless surgeries as an adult trying to determine the true disorder. What seemed like a tragedy at the time has opened so many doors for my future. It helped me decide on an area of study in college and allowed me to have contacts with some amazing people at ACH that have given me direction for a promising career. For this, my life has been changed in a remarkably blessed way.
Learn more about the Orthopaedic & Fracture Clinic at Arkansas Children's Hospital.