Brennan's Brain (Really!)

Surgeons like to perform surgery and non-surgeons like to prescribe medications (or just not perform surgery).  We learned that from watching the TV show Scrubs and also from our experience with the doctors who have seen Brennan in the last several years.  When Brennan started having seizures again after the nearly three years of being seizure free his first neurosurgeon suggested surgical options - including the procedure Brennan is in the middle of now.  Brennan's neurologist was like, "Hey now...let's make sure that we've exhausted other options because surgery can't be reversed."  

Brennan had absolutely no interest in surgery.  And the neurologist had a good point.  Some new medications were added and one that seemed to stop working was slowly eliminated.  There were changes in medications to try to reduce side effects that were as bad as the effects of seizures.  Eventually the neurologist gave us the news that if 3 or so different drugs are tried and don't work the chance of any drug working are very slim.  He was suggesting that surgery may be an option.  Brennan did not like that and for a few days after that news was in a serious funk.  

I wanted to put my hands on my hips and say in my stern voice, "You are having surgery!"  But that never worked to get him to clean his room and this was surgery.  This was cutting in to his body.  This was not something that would come with a do-over.  We kind of ignored the issue directly, but eventually scheduled Brennan to be monitored in the PEMU (Pediatric Epilepsy Monitoring Unit) at Phoenix Children's Hospital.  We wouldn't even know if he might be a candidate for surgery without the monitoring.  It was about a week in the PEMU - long enough for Brennan to have 3 seizures - to determine if the seizures were all coming from the same general area.  

During the time Brennan was in the PEMU he started to recognize that sometimes he had an aura (sign that a seizure was coming).  His right hand would feel cold and numb.  The area that was suspected of causing Brennan's seizures was the area that had the tumor removed back in 2006...it was on his right side.  Auras should be on the opposite side of where the seizures are starting.  Also, the epilepsy monitoring didn't show that well the areas where the seizures were starting.  But the doctors that reviewed the information still thought that the seizures were coming from the right side, and it was decided that a consult with a new neurosurgeon would be scheduled (Brennan's previous neurosurgeon moved to a different hospital, so we decided to find someone with Phoenix Children's Hospital).  

By the time Brennan had his appointment with the neurosurgeon he'd started having unpredictable seizures - sometimes as many as 6 in a few days, but mostly about 3 every week.  He had them at school, home, the grocery store, the mall, while playing basketball, while playing ping pong, while sitting, while standing, while playing Monkey in the Middle, on weekends, on weekdays, in the morning, in afternoon, etc.  Brennan was no longer angry about the idea of surgery. 

Brennan did admit that he was scared but he said, "I survived the first time."  We asked him if he'd feel better if he talked to someone who had gone through the same surgery.  He liked that idea.  We were connected with another family with a 17 year old son who had the same procedure just a few weeks earlier.  Alan spoke to the young man's mother and we tried to figure out when we'd be able to get together, but we weren't able to before Brennan's surgery date.  Brennan said, "I just like knowing he survived."  

The parents had a blog where they posted some pictures of their son's CT scan with the grid implanted. It helped me to see that and get a better idea of what to expect.  So, this is my long winded explanation for the photos I'm going to be posting.  A few of the photos are graphic.  Those are photo's of my son's brains.  I was bothered by them at first, but the operation was still going on when they were shown to us.  I've gone from feeling queasy to being in awe of it.  If you lean only to queasy, then now is the time to stop looking and maybe watch a YouTube video about kittens.  

This is Brennan when he was in the pre-op area getting ready for surgery.

This is Brennan's brain.
You are looking at the inside of the right side of his head.
The dark spot is the hole where he had the tumor removed in 2006.
(Brennan's face would be to the right of the photo.)  

This is Brennan's brain with a the grid placed.
The grid has little electrodes to detect seizure activity - specifically where they start (called the seizure focus).   

The day after surgery they take a CT scan to make sure there are no brain bleeds.
You can see the grid placement.  It seems like it's on the left, but it's actually on the right.

Another CT scan photo.
This one is looking down on the area.
I won't describe what I think is shown because I will then need to look at more kitten videos to feel better again.  

This is Brennan resting today.
He's still pretty tired from having 6 seizures yesterday and all the pharmaceuticals given to him to stop any more.  

We're all feeling about that wiped out...

Today, as Alan mentioned, was the motor mapping.  Instead of it being puppet master (tickling the electrodes to make fingers or toes wiggle), it was seeing if any of the tickling could interrupt movements.  Brennan's one and only job was to be annoying...he had to keep tapping his finger on the plastic thing the doctor put under his hand (an unused bedpan!), and occasionally stick out his tongue (he threw in trying to give me the finger on the sly, but that wasn't because he had to).  During the constant tapping and the periodic tongue sticking out, the doctor tickled parts of Brennan's brain and there were no changes to the parts that were supposed to be moving and also no unexpected movements in other areas - all good news.  That just means they can't predict with more certainty that there will be weaknesses in areas during the removal of the areas causing the seizures (doesn't mean it won't happen, but it seems less likely).  

Since the seizure focus seems to be on the right side, the testing was all on his left side.  And it wasn't expected that the area controls any important functions, but for a variety of reasons, including Brennan's previous tumor, there was still the chance.  It's even less likely that the area would affect Brennan's language, but there still may be some testing done to check that.

Tomorrow a bunch of doctors will gather in what they call the Epilepsy Conference to discuss what the next steps are.  No one has said anything for sure, but there has been some hinting that removal (or resection) of the seizure focus is going to happen.  There isn't just one itty bitty area, but a few itty bitty areas in a cluster that they would need to figure out how to remove.  Apparently there are options on how to do it, but that sounded like that part was left up more to just the surgeon.  

I'm afraid to feel like we're finally on some kind of homestretch.  I know it doesn't work like that.  But so far, there hasn't been any definite bad news.  And that feels good.  Better than YouTube videos with puppies.