Hello everyone,
I know several of you are wondering how things went for me yesterday at the neuro oncologist.
He says he's about 90% sure that the tumor is benign and slow-growing. He called it an astrocytoma, which means it grew from the white matter of my brain. It's just under an inch in size. He thinks it's been there for somewhere between 2-5 years, by guess. His main area of concern right now is that I had the deja vu and seizure on Friday, because deja vu also comes from the part of the brain where the tumor is located. Also the memory gaps and not being able to find words when I want to say them is concerning. So I get to have an EEG early next week. Then he wants me to have a PET scan to make sure there are no tumors anywhere else in my body. He also told me to make sure I keep the GI appointment, because Crohn's can occasionally cause inflammation in the brain. Then on July 3rd I will have another MRI with contrast. He'll use that one to compare to the one I had last Friday, and he'll be looking for growth of the tumor or any arterial activity in the area. He doesn't expect to see either one, and if he doesn't, I will have to have an MRI every three months for the rest of my life to monitor for growth or change, but the prognosis is pretty good. If he does see growth or change, then we have to discuss a different course of action, because growth or change in six weeks is a bad thing. so I just have to wait until July 3rd to find out for sure what the for sure prognosis will be. He's pretty hopeful. I will have to stay on the anti-seizure medication for the rest of my life, I can't drive until August 25th (as long as no more seizures), and I can't swim or bathe alone. He also told me I need to make sure I don't hit my head because that could cause the tumor to hemorrhage and that would be VERY BAD for me!
So that's what I found out. Overall it's pretty good news, as long as there's no growth by July.
I know several of you are wondering how things went for me yesterday at the neuro oncologist.
He says he's about 90% sure that the tumor is benign and slow-growing. He called it an astrocytoma, which means it grew from the white matter of my brain. It's just under an inch in size. He thinks it's been there for somewhere between 2-5 years, by guess. His main area of concern right now is that I had the deja vu and seizure on Friday, because deja vu also comes from the part of the brain where the tumor is located. Also the memory gaps and not being able to find words when I want to say them is concerning. So I get to have an EEG early next week. Then he wants me to have a PET scan to make sure there are no tumors anywhere else in my body. He also told me to make sure I keep the GI appointment, because Crohn's can occasionally cause inflammation in the brain. Then on July 3rd I will have another MRI with contrast. He'll use that one to compare to the one I had last Friday, and he'll be looking for growth of the tumor or any arterial activity in the area. He doesn't expect to see either one, and if he doesn't, I will have to have an MRI every three months for the rest of my life to monitor for growth or change, but the prognosis is pretty good. If he does see growth or change, then we have to discuss a different course of action, because growth or change in six weeks is a bad thing. so I just have to wait until July 3rd to find out for sure what the for sure prognosis will be. He's pretty hopeful. I will have to stay on the anti-seizure medication for the rest of my life, I can't drive until August 25th (as long as no more seizures), and I can't swim or bathe alone. He also told me I need to make sure I don't hit my head because that could cause the tumor to hemorrhage and that would be VERY BAD for me!
So that's what I found out. Overall it's pretty good news, as long as there's no growth by July.
