My neurologist tells me I have “transitioned” to Secondary-Progressive MS and my MRI notes an increase in one lesion that may instead suggest a benign tumor.
In July, my neurologist told me at my yearly appointment that I had transitioned to Secondary-Progressive MS (SPMS) and that the medicine I'd been self-injecting was obviously not slowing my progression so I could discontinue the daily shots and he then ordered my regular MRI.
So in August, I went in for this scan, first without then with an injection of contrast dye. 20 years on with this disease and I am so used to the procedure I even nodded off at one point which is quite a feat because the banging and noise is loud.
I have online access to my partial medical records, not the scans but the summary reports, so a few days later I got a reminder that the report had been dictated and was posted to my online account.
When I read it, it seemed pretty straight-forward: compared to previous scans, "there has been interval progression in disease with interval development" of multiple new lesions (as I'd expected). In addition, several of the previously noted lesions "appear to have increased in size." (crap)
Still, pretty much as expected UNTIL I got to the bottom: " …there is a 1 cm presumed extraaxial enhancing lesion seen along the right frontal convexity which appears more prominent in size in comparison with prior examination and may represent a meningioma." (What is a meningioma and how long have I had it if it's increased??)
Now my last MRI was Feb. 2007 and 'meningioma' is not mentioned (maybe not yet by name?). And in my Nov. 2005 MRI is a note that my largest lesion appears to be 5mm in the right front of my brain (oh, maybe this is it).
I switched over to the National Library of Medicine's Medline website (http://www.nlm.nih.gov/medlineplus/) to look it up. This is what I read:
"A meningioma is a tumor that arises from the meninges — the membranes that surround your brain and spinal cord. The majority of meningioma cases are noncancerous (benign), though rarely a meningioma can be cancerous (malignant)."
I didn't know what to think, but went downstairs to ask OH what he thought. Worried (understatement!), he insisted I make a follow-up appointment with the neurologist to look at the actual scan.
So I emailed my neurologist's nurse asking "What does the doctor think about this? Should I be worried or should I not be worried? Or should I not be worried yet?" (As an aside, I LOVE having this kind of access to my doctors! It costs about $60 a year but is so worth it!)
She called me back and set up an appointment for early September, saying he was taking vacation that month but nonetheless would be coming into the office to see patients in the mornings. I decided that if he hadn't called me immediately after seeing the scan results, he wasn't worried so I wasn't going to be either.
At the beginning of this month, OH and I went to see the scan. And plain as day, we could see a mass about the size of the tip of my thumb.
My doctor immediately assured me that a meningioma is almost always benign, slow-growing and not a threat to the brain tissue. He said that it was at an easily accessible location if we wanted to have it removed, but that the surgeon would probably not want to do it yet: it's small and slow-growing.
He recommended that, for now, we just keep an eye on it, that I have another MRI in 12-18 months to make sure its slow-growth isn't accelerating.
I let my GP know what was going on and what course of action the neurologist suggested. Without hesitation, she concurred with him.
So, we're waiting and watching and that's the latest from here!