Dr.Bragg and her NP both stopped by separately; Sue is writing the discharge orders. Dr.Bragg thought trying the acetazolamide (diamox) would be a good idea and even if we cant do it long term (checking with cardiologist and will fwd any response to her) it may give us another idea how well a 2nd drain would work. She mentioned that she would be looking at my scans again and talking to Interventional Radiology to make sure placing a lumbar external drain could be done in xray (I believe she would do it there awake) so that she could have a clear picture/image when she is placing the drain and be safely above the laminectomy from last May and know we are away from the areas that are abnormal. She thought a few weeks rest. I think 2 weeks on the diamox would give us more than enough info if it would help and how it would help my body/CSF; I am grateful she will let me try this in the mean time (and Cardiologist already responded back that a short term trial was ok) and maybe will do even more to bring down the last CSF pressure that is driving my vision batty and making sleep impossible. Literally waking up in the morning is like trying to pull myself from what feels like a dazed coma. Here at the hosptial I slept upright; literally almost leaning forward and last night finally slept for about 4 or 5 hours. Today the headache is there but not as bad as before this revision and for that matter it never is really like a headache it's the pressure or as if your wearing a head band or something compressing the skull from the inside out. Not nice!
We (I) know pretty well that this latest revision did the job in restoring my CSF pressure back to where it was when we placed the programmable medtronic-strata valve in Febr. (low setting) and a few weeks will do good for my body (I think we will likely do a 2 week trial on the diamox before I go back and see her but uncertain). In the mean time it allows other things to get done and also can gather info which everyone knows is what makes me tick. :)
I will continue updating throughout this all and about the other upcoming tests, appts, etc.
Thanks,
Erica
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