I know that you know there is always way more to tell. At this point we all understand TS is never a one-and-done kind of thing. But neither is life. There is an asterisks that goes with every story, every chapter. And this one is no different. Just like last visit, there is always the fine print.
I hesistated to even share this "wait and see, it may be nothing" kind of information but you all said you are all in.
So here we go...
There may be another place, other than the big nasty tuber, that is causing Luke to seize.
We were very prepared for this possibility.
We knew coming down here that we would probably see more action than just the one tuber since he has been off the Afinitor for a month (the drug that has kept Luke from having 50 seizures a day). Going back on the medicine after surgery will most likely give us control of this new seizure type.
Will we monitor with depth electrodes? See if we can remove? Wait to see if we can treat with meds?
We will have more to go on tomorrow.
Hearing the possibility that surgery may not take care of all seizures was momentarily deflating, but, again, not surprising and definitely not going to break our spirit and depleate our hope.
We continue to live in a world of cliches, so I reach in my bag and pull out my A-Day-At-A-Time card.
We knew there was more to the story.
And I bet at this point, you did, too.
Mother of two amazing little boys, one who just happens to be a TS warrior.