NYU Today

We had an appointment today with Dr. Devinsky and Dr. Singh from NYU.  We found out the results of the Wada and the fMRI (you can let out your breath – no surprises here).  It was our last appointment to “discuss” surgery options prior to surgery.  We should have a date set for surgery within the next few days…but get this: We still don’t know which type of surgery to go with.  Nuts, right?  Both tests show that the motor cortex on the right side of his brain controls his left hand and a little of his left leg and foot.  We “are in the driver’s seat” as our doctor told us.  It is up to us to decide what type of surgery to go with, there are upsides to both, and our doctor can only reiterate the pros and cons of each, but he can’t make the decision for us.  

…long exhale here……..

Here’s the breakdown in a nutshell – and I’m sure I’ve talked about this before – Lord knows I think about it non-stop:

Hemispherectomy: 

+ Only one surgery

+  90% chance of complete seizure cessation

+  No – or very little – meds needed (they come with bad side effects)

-  Probable loss of the use of left hand

- Possible loss of strength in the left foot (toes – who really uses their     toes though? So this one shouldn’t really count as a con)

Resection

+ Could keep the use of his left hand and toes

-  2 separate surgeries

-  Seizure cessation is not guaranteed  - percentage goes down quite a bit

-  Probability that he would need third surgery likely (or other form of treatment that    hasn’t yet been FDA approved or even invented)

-  Would probably have to stay on meds (with bad side effects)

Well, despite the longer list of cons, I was leaning toward the resection.  But Lincoln himself, yes indeed, Lincoln, the boy who owns the brain in question, decided that he wants to go with the hemisperectomy. 

Well knock me over with a feather!

He decided this because he wants to be done with seizures more than he is concerned with the use of his left hand.  We spent some time tonight taking an inventory of what he uses his left hand for, and you know what?  He really doesn’t use it for much.  He can’t use buttons or tie his shoes…but he can zip most zippers.  He can put the top on the toothpaste but “I choose not to” (as he just told me).  He does use it for video games, and while I hate video games, they do serve a purpose.  They provide the motivation he needs to use his left hand; they’re therapeutic in a way. 

So, Lincoln has spoken, and I can relax now….for tonight…as long as he doesn’t change his mind in the morning.