80 percent of the left side of my cerebellum was removed recently, followed by radiation and Temodar for six weeks, which ended late May 2017. I am scheduled to repeat chemo in 28-day cycles for a year. No one has been able to precisely identify or grade my tumor and it’s gene combination (Infiltrating astrocytoma, IDH wild type, ATRX retained, TERT not mutated, p53 not mutated, FGFR1 and NF1 mutated.) has not been found in medical literature. I need help figuring out what to expect and whether my symptoms will ever end. I am so tired, and off balance that I careen around like I am drunk.
The tumor was found 20 years ago after an auto accident, and I was told it could not be identified and thus should be monitored with an MRI every year or two. In 2005, after an MRI, my doctor said to stop worrying, the tumor was a harmless cyst. So I did as I was told until late 2015, when I started dropping things and had trouble lifting my legs to go up steps. My doctor prescribed hearing aids, more exercise, blood pressure meds (four) and sent me to PT to relocate crystals in my ears. None of this helped and my clumsiness, vertigo, and blood pressure kept getting worse. I kept asking about the tumor in my cerebellum, but the doctor said it was not involved. I finally insisted on an MRI in late February 2017, and three weeks later had surgery to remove a 2.5 x 2.8 x 2 cm cerebellar tumor that was pressing on my brain stem.
I am told that a primary tumor in the cerebellum is very rare, and that most occur in very young children with a few in late teens or young adults. They often recover quickly and many live a long time. I am 72, albeit a young 72, at least before this. Now I have scalp pain with pimples all over my bald head, my eyes won’t focus, I have unending nausea that is not helped by the usual meds, my left ear is blocked and can’t hear, and I can’t control my movements on the left side.
I would love to hear any information and ideas you would care to share. I am hoping this forum might connect me with folks in a similar situation. Thanks.