Wednesday, February 8, 2017

Right Left and All Around

So---after numerous EEGs, a PET scan,  a MEG, a SPECT scan, multiple MRIs, genetic testing and frequent and thorough record reviews and examinations by some of the best and brightest epileptologists here and in our neighboring state of Arizona during a hellish fourteen months of seizures running amuck---after all this---findings are inconclusive.

We now know that Michael's brain has no lesions (we knew that via MRIs in the past). We now know via the various scans that he has multiple focal points in both hemispheres and medially involving several lobes. We now know that  surgery, laser and Neuropace are unlikely treatment options. We now have a plethora of information about Michael's brain---more than we can comprehend. It feels as though we have done everything we possibly could to come up with a more definitive diagnosis and targeted treatment plan. And yet---we're pretty much where we were before the most recent descent into seizure hell.

We may try a new medication while dropping a current one, once blood levels are completed and IF we can figure out why, since mid-December, Michael's seizures have decreased significantly. That's right---SIGNIFICANTLY. Why? We, and that includes Michael's MD, just don't know. I suspect we very well won't figure out why.

We're not quite back to where we were prior to that bloody night of November 3, 2015, BUT we are starting to feel more confident that we will get there.  I can't say we were surprised by the results of the battery of tests though we were disappointed they didn't point to a more defined plan of treatment. We certainly didn't need any tests to validate that Michael's brain while sleeping is a abnormally busy organ and while awake, as the Mayo doctor noted via the EEG readings, it was "perfect".  

I'll end on that note. Right, left and all around. Perfect.






2 comments:

  1. Sending prayers....for hope, for continued courage, for strength and sending love and hugs

    ReplyDelete
  2. One day at a time. Grateful these days are a reprieve for you all. Love you friend.

    ReplyDelete