I realize my last post was way back in October. There hasn't been much to report since then besides Thanksgiving, Christmas, and the New Year.
My TSC specialist, Dr. Thiele, is waiting to hear from the neuro-radiologist about my series of MRI's he was to review. They are trying to determine if the actual SEGA tumor grew, or if there was a cyst element that sprouted and grew, a possible scenario, though rare. I have upcoming appointments with both my neurologist and my neurosurgeon, as well as a scheduled brain MRI.
Tuberous Sclerosis is called a complex because it involves many major organ systems in which benign cysts and tumors grow. Though not cancerous, they can cause structural and functional problems by virtue of location and size. Most people diagnosed with TSC, including myself, are found to have kidney involvement in the form of multiple cyst and/or angiomyolipomas (AML's). The AML's must be closely monitored for growth and removed if they become too large. I started having abdominal MRI's every six months, and now I'm having them once a year because the size of the AML's have remained stable since first diagnosis. My urologist and I agreed to try ultrasound next year so that I can avoid a post-MRI shunt check. So that's good news.
Basically, I go through phases of acceptance and annoyance. This time of year, it seems all my appointments cluster together and I am reminded of my condition. After my first surgery, it was easy to forget that I ever had a brain tumor, but now that I have a shunt, I can't ever forget. When I start to feel sorry for myself, I have to remember that I'm lucky to have a team of professionals taking care of me with amazing technology at their service. I have to remember that it could always be worse.
My TSC specialist, Dr. Thiele, is waiting to hear from the neuro-radiologist about my series of MRI's he was to review. They are trying to determine if the actual SEGA tumor grew, or if there was a cyst element that sprouted and grew, a possible scenario, though rare. I have upcoming appointments with both my neurologist and my neurosurgeon, as well as a scheduled brain MRI.
Tuberous Sclerosis is called a complex because it involves many major organ systems in which benign cysts and tumors grow. Though not cancerous, they can cause structural and functional problems by virtue of location and size. Most people diagnosed with TSC, including myself, are found to have kidney involvement in the form of multiple cyst and/or angiomyolipomas (AML's). The AML's must be closely monitored for growth and removed if they become too large. I started having abdominal MRI's every six months, and now I'm having them once a year because the size of the AML's have remained stable since first diagnosis. My urologist and I agreed to try ultrasound next year so that I can avoid a post-MRI shunt check. So that's good news.
Basically, I go through phases of acceptance and annoyance. This time of year, it seems all my appointments cluster together and I am reminded of my condition. After my first surgery, it was easy to forget that I ever had a brain tumor, but now that I have a shunt, I can't ever forget. When I start to feel sorry for myself, I have to remember that I'm lucky to have a team of professionals taking care of me with amazing technology at their service. I have to remember that it could always be worse.
