Jassmin Robinson, a 14-year old patient with May-Thurner Syndrome
My name is Jassmin Robinson and I am a 14-year old female from Ohio. I was correctly diagnosed with May-Thurner Syndrome (MTS) on January 1, 2008. MTS is a disease caused when the left iliac vein is compressed by the right iliac artery, increasing the risk of deep vein thrombosis in the left extremity. This is my story:
I was 8 years old when I started having swelling in my leg. As soon as my mom realized that the swelling in my ankle was not going down, she took me to the emergency room. The doctors wrapped my leg in a soft cast and sent me on my way. Slowly swelling continued up my left leg. My mom then took me to Children’s Hospital where I was sent to many different doctors and specialists, none of whom could figure out the problem. Children’s Hospital referred me to Ohio State University Medical Center where we met with a doctor who diagnosed me with Lymphedema. The doctor said that there was nothing I could do about it but wear compression stockings. I would just have to live with it. The doctor told me to have follow-up appointments every three months.
My mom grew tired of not getting any answers as to why I had primary Lymphedema. No one else in my family had it, nor had I experienced a big fall that could have caused the onset. Frustrated, my mom went to see my primary care physician, who referred us to Grant Medical Center. The specialist I saw there decided to do an MRV (Magnetic Resonance Venography) and a venogram. After these tests, the doctor told us that I had something called May-Thurner Syndrome. He said he could perform an angioplasty procedure that would be beneficial. Finally, my Mom and I got the answers we had been looking for. I had my first angioplasty in December 2006 and a second one in June 2007.
Since the angioplasties, I have a follow-up appointment with my vascular surgeon at Grant Medical Center every three months. Each visit, I have venogram and the doctor looks at my leg to make sure everything is going okay. At a follow-up appointment on November 20th of 2008, the doctor found a blood clot in my left internal iliac vein. Right away, I was admitted to Children’s Hospital and started on Heparin, Lovenox, and Coumadin. I was in the hospital for four days. Now I see a Hematologist every two weeks who administers my Coumadin and does my routine blood work.
Since this was my first clot, I was only supposed to be on Coumadin for six months, but my vascular surgeon would like me to stay on it until my follow-up appointment with him in late August of this year. He will be placing a permanent stent in my leg sooner than expected because I have a stenosis. If he doesn’t put a stent in soon to stop the problem from getting worse, I will have to have clot-busting drugs.
This disease has changed me because I now listen to my body. It has made me appreciate my life and the people around me so much, because I know things could be a lot worse. I would never change having this disease; it makes me who I am today and I believe that it makes me a better person.