The story of Jennafer
In early 2011 I noticed a bulge at the base of my neck where the shoulder and neck meet. I went to my regular doctor as soon as I could and he was perplexed by it. He ordered X-rays which showed nothing, and then ordered an MRI which my insurance company denied. He then put me on as needed pain medication as I began to have shoulder pain. As the months went by, my doctor put me on nerve medications and referred me to a specialist in the area for a biopsy because the bulge had gone from the size of a pea to the size of a clementine. I had surgery with this specialist and waited for results to come in. When they finally did and I went back in for a recheck, the specialist explained to me that the results were inconclusive and while he was performing the surgery, the tissue looked “weird” (as he put it) and said he did not want to go any further and only took a small sample. The mass was infiltrating my nerves and muscles in that area of my shoulder. About 3 months later, and after a long battle with my insurance company, and pain getting worse, I finally was able to get an MRI done. The images were very clear of the mass, and quite scary to be honest. I was then referred to another specialist in DC who works in joint with George Washington university hospital. He requested that I have the hospital that did the biopsy send him the slides so that he could see for himself what he was dealing with. After about a week, I went back to see him and he said he could not make it out too clearly but it appeared to be fibromatosis. He then referred me to yet another specialist, a head and neck surgeon who also works with GW university hospital. After this doctor reviewed the MRI images, he agreed to do the surgery but was very skeptical because he was worried that the surgery would leave my left arm paralyzed because of how infiltrative the mass was. He then referred me to a top neurologist of GW hospital so that he could get familiar with my case and be there for the surgery to monitor the nerves in my arm. My surgery was rescheduled multiple times due to not having all of the special monitoring equipment available at the times. When the surgery was finally scheduled, it was a long day. The doctor had said the surgery could take up to 3-4 hours, but it ended up taking close to 8 hours. The mass was the size of a clementine orange, and they were not successful in removing all of it. They had to go through the top of my shoulder, down to my left lung, where a small piece had to be left out of fear of collapsing my lung upon removal. They removed all lymph nodes in the left supraclavicular area (medical term for the whereabouts of the mass) as well due to the damage caused by the mass. I was hospitalized for 4 days, with 2 large drainage tubes sticking out of my shoulder and a 9 inch incision that began at the front of my neck and wraps around to my shoulder blade. In total of 32 staples were in place. I was unable to move my left arm from the elbow up, but could from the elbow down. When the results came in from the biopsy after removal, I was told it was in fact Desmoid fibromatosis. Went through a lot just to find that out!! After a few months of physical therapy, I basically had to retrain myself to lift my arm using my shoulder. It was a long process, it took a lot of work. A follow up MRI showed no signs of the mass trying to return. To this day, I am still on nerve medications to help with nerve damage from the mass, surgery, and scar tissue. My shoulder is still a little weak and stiff at times. I have little to no surface feeling on the top of my left shoulder and nerve damage all the way up the left side of my neck on to my left earlobe and left side of my jaw (surface nerves only it seems). It was an experience to remember for sure, and I believe it was the same to the doctors involved. My regular doctor always calls my his “special patient” due to the amount of work it took to get me taken care of! I should be due to get another MRI as a recheck just to make sure it is not trying to grow back as desmoids have a high recurrence rate. They may not be cancer, but they are a scary and stressful thing to deal with. Although very rare, I feel that more awareness should be made about them so that future patients do not have to get bounced around from doctor to doctor and have surgery after surgery to figure out what it is.