Hi my name is Jessica. I was born on December 1982. I was born at Latrobe hospital. When I was born I came out with a lump under my left arm the size of a cantaloupe. I was Life flighted to Pittsburgh”s Children’s Hospital. There I underwent 20 hour surgery. They discovered the cantaloupe size tumor was cystic hygroma. To their surprise that was not the only problem in the left arm. They discovered that I had lesions all through my bones. The diagnosis for these was Lymphangiomatosis. I had lesions in the skull, spine, left arm, pelvis, ribs, and right leg. At this point the left arm was the worst. It had at least 20 lesions on it. This ended up being one of the biggest cases they have ever seen. I was one of the fortunate people who were diagnosed with in the first 48 hours of my life. At this time I had all kinds of doctors and specialists. I don’t remember, but my parents tell me that they had doctors try and do unnecessary surgeries, just to see the lesions. My parents took the blunt of the battle at that age with doctors who thought I was an experiment. So words of advice, be careful and use your best instinct when it comes to your childs care or your own. When I was 3 I had what they thought was another cystic hygroma removed from my neck. It had grown to almost the size of a gulf ball. From the age of infant to the age of 6 I broke my arm more than 28 times. If I bumped it, it broke. If I fell, it broke. I remember simply playing in the ball cage at Idlewild Park and another kid stepped on my arm and it broke. At the age of 6 I underwent surgery on my right leg. There was a lesion on the femur that was increasing in size and the doctors were afraid that would fracture like the arm so they went in scrapped the lesion down to clean bone and filled it in with bone from the bone bank . They put me in a cast from my waist to my ankle to stabilize it. That surgery was very successful so the same orthopedic surgeon said since the leg was so successful let’s attempt the arm. The arm was much more complicated because the femur only had 2 lesions and the humorous had over 20 lesions and severe deformity. My arm was bowing outward. The doctor went in scrapped all the lesions, which was most of the humorous, put a rod and 3 wires to hold the rod in place. They put good bone from the bone bank to make my arm in hopes to take over the bad bone. I had to be in a cast for more than 20 weeks and then they made a brace for my arm that I had to continue to wear when the cast came off. This has stabilized my arm for many years after. After the age of 8 they just watched everything to make sure that nothing got worse and monitored the pains I had. I went to school successfully but I was limited what I could do with the other kids. I was not able to take gym and I had a more low activity recess. At the age of 15 I became pregnant. I carried my daughter to full term without complication she was 7lbs 8oz. 20 inches long. The only thing they would not do during my pregnancy was give me my epidural because of the lesions in my spine. They even took one x-ray during my pregnancy to make sure everything looked good.The road bump in my life would be when I was 18 I had graduated and got a new job as a waitress at Eat N Park. I was carrying the tray of food and the left arm gave me severe pain. This was the point in my life where I had to undergo surgery to have 2 of the wires removed because they got wrapped in the muscle. I then continued to work and go to college while raising my daughter, who shows no signs of lymphangiomatosis, cystic hygroma, or ITP. I got married to my wonderful husband on September 4, 2004. Then something weird happened. I had to have my wisdom teeth removed because they were causing pain and they were impacted. I had them removed was sent home. While I was at home my husband and I could not get the bleeding to stop. The bruises on my face looked like someone punched me a few times. My husband called the dentist several time. He had me come back to his office. During this consultation the dentist said to me you need to go see your family doctor. Your mouth is forming liver clots and this is a sign of clotting issues. The next day I went to the doctor. I showed the doctor the bruises on my face from the surgery, the bruises on my legs and the little red dots on my chest. She immediately took blood work to discover that my platelet level was 1200. Your body needs between 250,000 to 450,000 in your body to properly stop bleeding. I was admitted to the hospital and underwent hemoglobin fusions. I was put on steroids. It was diagnosed as idiopathic thrombocytopenic purpura also called ITP. The doctor said this is a rare occurrence and it usually doesn’t happen again. 6 weeks later they dropped to 1600 that is when they said it was the spleen. So I took a cancer treatment called rituximab to boost the platelets and hope that they stay up. I have been thankful since I took the rituximab. My platelets have been up for 4 years now.I continued college got my business degree and got a job at Eat N Park as a Manager. I have been a manager for the past 7 years. I had gone to my orthopedic in Pittsburgh in November 2009 because I was experiencing neck pain. The doctor did an MRI and decided that we were going to leave it be. I was at work on Saturday April 16, 2011 I reached for a clip board and my left arm gave out. I went to the doctor because I couldn’t move my arm. I had x-rays which showed no movement of the rod or wire that still remained in the arm. No fractures or breaks so the doctor sent me for a nerve conduction test. I found out that my radial nerve was damaged and I have muscle loss. My right arm had and finger weakness. I have bulging in my cervical spine that may cause me to never live my life the same again. I risk the spine collapsing and causing me to be paralyzed from the shoulders down. Now the doctors are telling me there is nothing they can do. I guess I’m on a new path to find new doctors. Dr. McGough and Dr. Lee said My pain is due to physical stress and everything else will work itself out. This is just statements of doctors that don’t understand the risk of the disease. I’ve resently am fighting to get health insurance coverage so that I can continue to have tests. My next step is to see doctors either in Boston or Ohio. I want to thank all my family and friends for supporting me every step of the way.
Well I have had insurance for a little bit now. I found PA faircare which is insurance for people with pre-existing conditions. It is not too bad it is through highmark blue shield. I’m almost have all my record ready to send to the doctors in Boston, I have contacted them and they left me know exactly what I need to send to them. I am currently seeing an ear, nose, and throat specialist because my tonsils are now what they call kissing tonsils, picture of them under my pictures. I had an MRI of the head and a TNE (scope put in the nose and down the esophagus). The MRI showed that my lymph nodes are swollen and the TNE showed a small tumor behind the tonsils and that I have an obstructed airway. The specialist is sending me to another specialist in Pittsburgh because they are not equipped to handle my tonsillectomy if something were to go wrong because of my ITP. I had my consultation in Pittsburgh for my tonsils and had the tonsillectomy. Everything went fine. I also got information back from Boston and they have to see me in person. They can’t determine anything with the images given to them from pittsburgh. I will make that trip as soon as I can save enough money to go.