Marcia had a Spinal Tap procedure today. While this was a planned procedure, which I'll explain further below, we didn't plan for 48 hours of complete rest. As we were scheduling the procedure, we were told about 10% of patients experience headaches, but aside from that, it sounds much worse than it is. Marcia had planned to resume normal activities today and I planned to go to Dallas for a planned meeting. We were told yesterday that she isn't supposed to drive and should remain flat as much as possible for 24 to 48 hours and can't really do any physical activities for about a week. The recovery period is really to prevent leakage and any infection, which in retrospect sounds very reasonable and maybe should have been common sense (which I apparently lack). She is sore today and I definitely made the right decision not to go to Dallas. I needed to be home until she can drive and stand again.
As some of you know, Marcia has been undergoing a fair amount of tests over the last 8 weeks or so, but it's been almost two years since symptoms of language impairment started to show up and about 18 months since we first started to look for medical assistance. Testing has included MRI's, EEG's, PET Scans, CT scans and a battery of neuropsych tests. Explaining all of these would be lengthy. Summary would be that the medical side looked at as many views of the brain as doctors thought appropriate; the neuropsych tests are a battery of tests for language, memory, spatial capabilities, etc... We have been going to the Atlantic Neuroscience Institute at Overlook, and have been pretty pleased with the quality of care there. The head of the department is the neurologist overseeing Marcia's care and has shown us that he'll keep looking for a cause vs just a diagnosis. We do know, however, that this isn't an easy thing to find, and may take a while.
We don't have a diagnosis that her doctors agree on. Some of the tests show no issues, some show definite impairment, but not necessarily the same thing. What we do know is that her condition is serious. How serious, we don't yet know. The Spinal Tap is what our neurologist recommended to help determine what's causing "significant" language impairment and some memory loss. Apparently the fluid surrounding the brain and spine can reveal significant information that other procedures we've done cannot. What we are hoping for is blood vessel inflammation, or some other inflammation in the brain. An infection is also possible, but the least likely of the three. All three are treatable and the neurologist has seen complete recovery of language and memory. We are told we should have results in about a week.
Not sharing more up to this point has not been a planned omission. We just haven't had much to share yet -- just lots of tests. Honestly (and unfortunately), the staff at Overlook is getting to know us pretty well. Marcia is holding up pretty well and would prefer to keep doing what she normally does. Having this dominate conversations for her is more depressing than helpful at this point (and I'm finding that to be true for me as well), and even cards and calls tend to be reminders of what she isn't comfortable talking about. Thoughts and prayers for Marcia and our family are definitely helpful and appreciated. Respectfully, that's what we want to limit this to, at least until we know something more definitive.
Your concern, support and willingness to help have been fantastic, and is very much appreciated!
The last 10 weeks or so have been a blur. Since our first trip to the Neuroscience Center in early August, we’ve been on an emotional roller coaster. “Normal” just doesn’t fit right now. I do know what I have to do for my family. We'll see how strong I am. At times I feel like I absolutely will handle this. Other times I'm not sure how I can. Young kids present some challenges I never imagined I would have to deal with. But one can’t forget how to laugh, and the need to find time to do so is magnified.
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