My friend just posted this on FB but I thought it was highly appropriate to share here. I've talked about my NF2 before and even shared my journey with you, but this will help you to quickly understand why my recent vacation was the adventure that it turned out to be.
NF2 is caused by a lack of Merlin produced by the body to stop tumors from growing where they’re not wanted. Merlin is the body’s home-owner’s association, and without it, thugs come in and set up shop along the brain and spine.
These are benign, mostly harmless, and they’re only dangerous when they start to infringe on their neighbors rights, like those filthy hippie squatters and their VW van bringing down property rights around here.
All people with NF2 get tumors in both ear canals, which is where the cranial nerves run and why NF2 is so dangerous to hearing, vision, facial movement, and balance. But other than that, NF2 affects everyone differently; this is why it’s so hard to treat. Doctors have no set pattern to study. Tumors pop up on the lining of the brain, by the brainstem, on the spine, just hanging out. They may sit there for YEARS not bothering anybody, then decide to strap a bomb in a backpack and blow up the nearest 7-11, biologically speaking. But it’s not as simple as removing tumors as they pop up; there’s too many, for one thing. Brain surgeries take a lot out of you, and having them done repeatedly isn’t feasible. There’s also the “surgery begets surgery” axiom; once you open up a skull and expose the brain to air, something happens and you trigger tumor growth.
So what happens is, we monitor tumors with annual MRIs, which are compared to previous MRIs to check growth. Today, scans are kept digitally or, at worst, on CDs. “WHEN I WAS A KID” walking uphill through the snow both ways to the doctor, we carried our films with us. I always had to drag 3-4 years worth of giant envelopes full of scans to my appointments, and the doctor would compare them using a pencil and paper to scale.
Nowadays doctors just click and drag. Technology is awesome.
Then it becomes a game of, ok, this tumor has grown more than this one but this one’s closer to something important… So when an NF2 patient gets a report of “stable,” that’s the best we can get. “Come back in a year” is good also. But an NF2 life is that annual gut-wrenching MRI waiting game. So “come back in a year” is great news.