I've had a little more time to process the information I received on Friday (the left sided findings from the MRI), and realized this probably doesn't change much. It may, in fact, be another indication of bilateral abnormalities, largely due to the VEEG he had back in January. Although there was no focus detected, there was focal slowing to the right side between seizures. Not the left. The two do not correlate at all. That's definitely not good.
I was so distracted by the fact that there was finally evidence that supported my left sided theory that I didn't stop to really focus on the main issue. Yes, there's a left sided abnormality. But...it's extremely likely that there's a right one as well. Which probably explains why I wasn't informed and steps were not taken. I'm certainly not defending a doctor that did not have to decency to discuss my son's first abnormal MRI, but I'm starting to understand why is wasn't a pivotal moment when the results came back.
I'm still planning on trying someone new, regardless of the outcome. Many of you know I've never been satisfied with our current hospital. But, it was the only place in our area that any of the other doctors and specialists we've seen have recommended...especially Dr. C. I truly valued his opinion and if he said we should try to stick with them, I thought I'd give it another go with an open mind. Well, it's been over a year and I'm still not happy with them. I'm thinking I'll most likely just try to get an appointment at the other hospital in the area and just see if they're a good fit and go from there.
I mainly just wanted to clear up the inconsistencies from my last post. I knew at the time that the EEG wasn't particularly supportive, but for some reason I thought it could be wrong or not even be a major factor. But, after all the nonstop thinking and comparing other test results over the weekend, I finally stopped and saw it for what it really is. Very likely bilateral. I really just wanted to believe that it wouldn't matter. I guess that's just what happens when my heart responds more quickly than my brain.
2 comments:
Sophie's EEG never supported surgery. It was always chaotic on both sides. Sophie's PET scan showed abnormality on the left hemisphere but it also showed a small questionable area on the right hemisphere. That is why they put grids on both hemispheres before surgery. There was a small chance that they would not go further with the resection.
I mentioned Riviello on the group. But maybe you already see him and it's him that's not helpful. IDK, anyway you said Memorial Hermann and he's at Children's which is where you already are I think.
Wish I could have been of more help.
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