Wednesday, November 24, 2010

Is less more?

Well, yesterday's appointment couldn't have been further from my expectations. This will be a super quick summary as it's already noon here and I have yet to start baking my goodies for Turkey Day tomorrow (had lots to catch up on since yesterday -rest mostly!)...

First, we didn't schedule the surgery like I thought we would (or told we would). There seemed to be some confusion regarding whether or not a corpus callosotomy will be performed. After the first surgical conference (the one where they said a clear 3T MRI was needed to determine surgical candidacy), our doctor told us the proposed procedure would most likely be a left frontal lobectomy with the corpus callosotomy (a procedure usually done for drop seizures that disconnects the two side of the brain to cut off communication -therefore decreasing the chance for seizures to spread (or generalize). But, after the most recent conference, it was decided they would not do it. So where's the confusion? Well, once we met the neurosurgeon and he asked some questions, he started to question whether or not to go ahead and do it with the lobectomy versus waiting to see if it would even be needed. See, Austin does have a very very obvious and clearly defined lesion on his left frontal lobe. No doubt it's a cause for seizures. However, the million dollar question is...Is it the source of his drop seizures? Why? In his opinion, it's quite unlikely that such a generalized type seizure is originating from that one little place. Possible? Yes. Which is why he would like to just do the lobectomy and then, if needed, the callosotomy at a later time.

This was extremely disheartening. Although our doctor did not give me high expectations for complete and total seizure freedom with the surgery, he did sound very confident that this was the spot. The big bad spot that has wreaked havoc on our lives. That although not 100% sure this would be the be all end all, we had a very good chance. So, to hear this...very scary. And why not have one surgery and be done with it? Why take the chance to have to operate on my baby's brain a second time? In his opinion. Less is more. You can go back and do more, but you can't undo anything. I talked about my lack of recent research in my last post, but this one needs some googling. I will have to really understand more about this procedure before I will understand why he thinks two brain surgeries could be better than one.

We didn't get a chance to get too in depth with specifics. In part because our epilepsy doctor happens to be in London (he's always abroad when we need him) and couldn't be reached. He really didn't want to overwhelm us with too many possibilities. I think he came in with a plan of action and abandoned it when I told him how the drops ruin our lives. Even so, he still doesn't want to do the callosotomy with the lobectomy, but didn't want to mislead me as this would be a group decision. He thought it was worth another discussion.

So this is where we stand. Definitely a lobectomy -most likely the first of the year. Possibly a corpus callosotomy, but maybe not. We got a lot accomplished, huh? By the way, it's hard to really convey the intended sarcasm in writing! It was actually a colossal waste of a day. All of this could have taken place over the phone, and none of it was real news. I did get to meet the guy (and this is one that actually has a decent personality), but that's about it. We rushed out yesterday morning, fixed a flat when we were already running behind. Dealt with traffic delays and weather because this appointment was far too important to reschedule. Sat in the waiting room for two hours. To not schedule the surgery or learn anything we didn't already know. My whole body ached when we got home.

Now...I must bake!


blogzilly said...

I'm a bit speechless. I can offer no words of wisdom, since our situations are so different, other than do your due diligence and try to stay focused on the main goal.

I know its hard, belive me, and there are says when you want to throw in the towel. On those days, doi what you can to hand the towel off to someone who can carry it for you.

I'm always here. Always home. Call anytime if you just want to talk. 740-936-6063.

happy's mommy said...

The first of the year is coming up quickly...



Sophie's Story by Elaine said...

I know how hard this process is and I am so sorry that you did not get more answers.

Just wondering...have they discussed grids?

I know every situation is so unique. But from our experience, the grids were able to locate exactly where the seizures were originating from. And it was from the data they collected from the grids that led the surgery.

Like I said before, I am here for you. Call me anytime.