MRI of spinal cord showed no pressure from tumors or displaced vertebrae pushing on cord. I do now understand why I have shrunk 3 inches and have bad back pain. I have 2 discs being smashed by the vertebrae and 12 vertebrae that have large chunks of bone missing and are tilted out of position. Almost wish I had not seen the pictures of this. Now it is burned into my brain.
Repeat MRI of the brain had the radiologist very confused. He was so sure his initial diagnosis was right (PML) and the repeat didn't show any advancement of white cell destruction (this is very good news). He sent the scan pictures to a rad doc in California who is a "world expert" on MRI reading. That doc thought the white cell damage was less on the second scan.
Spoke with my neurologist this morning. She could not explain why the damage area would be smaller, why my neuro symptoms are not improving, or what in the world could be going on in my head. She said the only way to be sure was to do a biopsy. I declined having a needle stuck into my brain - thanks but I'm not that crazy yet!!
Available options at this point is a small stroke that is resolving. If the initial scan was immediately after the stroke there could have been cells that was damaged but not yet dead and blood flow got to them in time to save them. It could be atypical bc lesions that the chemo is affecting and they are getting better. It could be some unknown cause and if it doesn't grow my neuro symptoms might yet resolve to some extent.
So the plan now is to have a repeat PET scan the end of May to see if the chemo is affecting any of the other 9 known tumors. If it isn't we will go to game plan B with a different chemo. I love that my oncologist doesn't give up (just like me). I told him I wasn't ready for the big dirt nap and he fell out of his chair (literally) laughing.
I told the neurologist if my neuro symptoms get worse I would call her for an appointment. If PET scan results show any thing new in the brain she would be hearing from my onc and/or from me.
I know I was very whiny when this first started but I've got my big gal pants on now and feel much better about what is going on. Praying about it also has helped a lot. Thanks for the prayers, positive vibes, and being there to listen.
take GOoD care
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