I had just met with my endocrinologist at M.D. Anderson for my annual follow-up and overjoyed because of the news I received that my tumor was stable. However, the excitement quickly turned to confusion when I left his office. As I walked to my car in the parking garage, I received a call on my cell phone from my ENT's office in Dallas. The nurse on the line expressed concern and said that my doctor reviewed the MRI films and noticed some "changes." She wasn't specific about what kind and wanted to know if I was still having headaches. "Yes," I replied, "Headaches are still a problem. I had a raging one the morning of my MRI." The car ride home was filled with questions regarding the newfound concerns. I wondered if the nurse's questions were related to my tumor. Did the ENT have a different opinion about my tumor? Or was it just the appearance of my sphenoid sinuses? She didn't say. I needed to get a CT Scan and follow up with my ENT to discuss the findings. I met with him this week to go over the results. First, he said he tried to contact my neurosurgeon in California over the phone about his concerns before my appointment, but he was unsuccessful in reaching him. Because of this, he consulted with a local radiologist regarding his concerns about was he saw on the x-rays. The meeting outcome between the two doctors resulted in me being referred to a new neurosurgeon for a fresh perspective and closer look at what he described as the "big picture..."My ENT explained that when a doctor looks at only one or two scans at a time, it is easy to conclude all is well. Sinus disease can look like typical post-operative changes and the residual tumor is still relatively small, so in a quick glance it would appear unchanged in size. However, when my ENT laid out the numerous MRI and CT scans chronologically, it told a different story. When he consulted the radiologist about my case, they agreed there were ongoing changes in the sphenoid/sella region of my head and the left cavernous sinus. It is difficult to determine the cause of the sphenoid changes, but the ENT is almost certain it is not scar tissue, and he suspects (but cannot say for sure) the dislodged mesh is part of the problem. Ongoing disease or infection in this area warrants surgical intervention because its proximity to the brain is a risk for meningitis.
On the other hand, having surgery is risky because the mesh is adjacent to the carotid artery. Bone has begun to encapsulate portions of the mesh, making it difficult to remove without injuring the artery. The doctor continued to describe my predicament as "dangerous and potentially catastrophic" and believes a nuclear medicine work-up might prove helpful to get a better look at the bone in the pituitary region of my head before moving forward with any treatment plan. He has left the decision up to the new neurosurgeon. Also, upon closer examination, my ENT and the radiologist differed in opinion from M.D. Anderson that my tumor is stable. They suspect the tumor may have enlarged this past year.
The MRI report stated there were no worrisome findings. However, if it is true that I have infection and my tumor has grown, I will most likely need surgery and radiation treatment. Updates will follow when I get a clearer understanding of the big picture.
The MRI report stated there were no worrisome findings. However, if it is true that I have infection and my tumor has grown, I will most likely need surgery and radiation treatment. Updates will follow when I get a clearer understanding of the big picture.
