It's hard to believe I had brain surgery three weeks ago. The only problems I have right now are my general stamina, my headaches (which are "normal" headaches now), and vision fatigue. I've been walking for 20 minutes several days a week, trying to improve my stamina. I find that I no longer need to sleep during the day, but my eyes get tired, so I have to close them and listen to tv or music so I don't get bored. My headaches are of the tension kind, not the throbbing-blocked-CSF kind, probably from subconsciously keeping my head still, afraid to hurt it. I have a post-op appointment with my surgeon next week, after which I should be cleared for normal activities. I don't plan on getting back to my pre-surgery routine quite yet, though. But I will be glad to have a little more freedom to do what I like.
My dance with the medical community is far from over, however. Now that I'm suspected of having tuberous sclerosis complex, I face a slurry of tests encompassing almost all of my body systems, as well as more brain MRIs. If the genetic test is positive for the mutation, I will have to have my children tested, since each of them will have a 50% chance of having the mutation, requiring them to be monitored throughout their lives. My parents and my siblings will also have to be tested in order to determine if I am the first in the family, or if I inherited it from one of my parents. I have contacted The Herscot Center for TSC at Massachusetts General Hospital, a place that specializes in testing and treating people with tuberous sclerosis.
No comments:
Post a Comment