At nineteen years old, I was in excruciating pain and it became so unbearable my life began to change. My legs were swollen and bruised, I had constant numbness and tingling in my feet and as soon as I started running up and down the court, I was overcome with pain that brought me to tears. After being treated for over a year for common shin splints, my athletic trainer sent me to a doctor for imaging. I had an MRI done and was hopeful there would be stress fractures in my shins from all the years of playing basketball that needed time to heal, but my scans came back clean. The doctor told me there was nothing wrong with me and I could continue to play, but I knew there was something wrong. Nevertheless, I continued to play in agonizing pain without any diagnosis. I began to wonder if I really was just being dramatic. Was it all in my head?
After having no improvements from rest and physical therapy, I was sent to a string of doctors because my athletic trainer would not allow me to play until I had some kind of diagnosis. Through every stress test, every biopsy and blood draw, every missed class, game or practice, every time I was told the same thing: there’s nothing wrong. From the stress of being a collegiate athlete who couldn’t play and being three thousand miles away from any family, I was ready to give up.
And then I got an appointment at Boston Sports Medicine that changed my life. The physician specialized in compartment syndrome and after examining me concluded I did not have a traditional case, but there was something called Popliteal Artery Entrapment Syndrome that fit all of my symptoms. I was then sent to a vascular surgeon at Boston Medical for testing, but was told this condition is extremely rare and it is not likely someone of my age would have it. I went into the appointment with the expectation of being told there was nothing wrong with me, as I had been told so many times before.
At twenty one years old, I sat alone in the vascular surgeons office waiting for them to bring me my results and send me on my way. However, this time was different because they didn’t come into the office, but I could hear doctors speaking in the hallway and I became nervous. I knew they were talking about me, but what were they saying? I sat in that office for over thirty minutes before the doctor came in and explained I have Popliteal Artery Entrapment Syndrome in both of my legs. This basically meant I had no blood flow going into my lower legs anytime I used my muscles and the condition is so rare many doctors have never even heard of it. It was so rare that an elite vascular surgeon had never seen a case himself. I cried not because of this life changing diagnosis, but because I finally had a doctor believe me and validate the pain I felt every day for the past two years.
Patient Advocacy became personal for me after my experience and I started helping my vascular surgeon by sharing my story with other patients who were going through the same thing. My case and surgery were published to teach other doctors about this condition. I was surprised to know there are only about ten surgeons in the United States who are experienced and willing to attempt this particular surgery. Now, my surgeon specializes in Popliteal Artery Entrapment Syndrome and has made it his own cause to help people like me. Without the support systems surrounding me and pushing me to find answers, my life could look very different than it does right now. All in all, advocating for yourself is of utmost importance and you know your body better than anyone else. I feel privileged to be able to help others through patient success and advocacy work here at Leapcure and hope to continue to help people for a very long time.