We met with Cameron's Neuro Surgeon for the first time yesterday. Dr. David Bauer is an awesome guy. Ya know that guy in high school, that really smart one that everyone joked would be a brain surgeon when he grew up? That's him. He's incredibly smart, but made sure we understood everything he was discussing with us. We left the appointment without a surgery date, but with a little more information about what's going on in Cameron's brain (and still questions, too).
Basically, there are three scenarios.
#1. After looking at the PET Scan, Dr. Bauer and Dr. Morse (Cam's Neurologist) found that the left hippocampus, amygdala and lower temporal lobes were basically non-functioning. The amygdala and hippocampus are frequently sources of epileptic activity, so it is very likely that this is where Cameron's seizures originate. Dr. Bauer could preform a limited surgery where he would just retract those sections of Cameron's brain leaving a very good chance he would be seizure free post-surgery. Dr. Bauer's only fear is that these three areas don't deal with Cameron's motor skills (or lack thereof) at all. His fear is that there is more of his brain affected (It can be seen in the PET Scan that part of his left occipital lobe and a small section of the frontal lobe are "darker" than the right side) but the other parts that may be effected are parts that could be Cameron's source of speech and language. Doing the limited surgery would have a less than 1% chance of Cameron having any long-term problems after. If he was more aggressive with the surgery, it could leave Cameron unable to talk ever again. Dr. Bauer would NOT do that though, which brings us to scenario #2.
(Some pictures to help, for you visual people like me! :))
#2. Because Cameron is left handed, his speech and language "should" come from the right side of his brain. We just don't know if he's genetically left handed, or if his brain "made" him left handed. Dr. Bauer could be more aggressive with the surgery if we know for a fact that Cameron's speech and language come from the right side of his brain - so how to we figure that out?? Well, for scenario #2, Cameron would have a minor surgery to place electrodes on his brain, they would wean him from his medicine and wait for him to have a seizure. They would be able to create a "grid" of what his brain does and how it works so they would know if he is using the left side to talk, or if that section is also non-functioning. They'd also be able to see exactly where his seizures originate and if it's coming from more than one location. If it's non-functioning, Dr. Bauer could remove it and Cameron would have no issues afterward. If it is where the language comes from, it would stay, but we'd know where the seizures are instead, and they'd evaluate that area. Dr. Bauer could then do the more extensive surgery, and with the grid, Cam would have a less than 1% chance of any long-term problems. The biggest issue with scenario #2 is that Cameron is young. The electrode placement requires the patient to stay in bed (not completely immobile, but he can't go running around). Cameron does not sit for more than 2 waking seconds at a time, so it would be extremely difficult to get him to stay in a hospital bed for up to two weeks (less if he had a seizure before then)! He's also small, so Dr. Bauer is afraid the electrodes wouldn't really fit. And so, scenario #3.
#3. We wait. We would do nothing for a couple years until Cam was bigger and could understand more of what was going on, so we could explain that he needed to watch movies and play games in his hospital room. His brain would be larger so they'd have a better chance of fitting the electrodes. Dr. Bauer shared his opinion and doesn't think this is the way to go. As he starts school, he could suffer set-backs if he has seizures while in class. Also, if the brain is allowed to seize over and over, it can have negative effects long-term.
We talked about possibly doing the limited surgery with the chance that he would not be completely seizure free, but maybe he'd stop having all of the little ones and have just a few big seizures in a year, then down the road place the electrodes and see what they find. In the end, we did not make a decision. Dr. Bauer and Dr. Morse feel Cameron's case is big enough to bring to their Epilepsy Conference this Friday. The conference is a whole bunch of epilepsy specialists from neurologists to surgeons, who get all up-to-date on the latest technologies and studies, but also discuss major cases. They want to see if any other docs have had similar experiences - whether they should try the electrodes, or just proceed with a limited surgery, or maybe have another option. Shawn and I are both very happy and very thankful that Cameron will get the expertise of an entire conference of specialists. We know that he'll get the absolute best chance and best options available.
And so, now we wait again. We should hear on Monday or Tuesday what they discussed and what options we have. Meanwhile, Cameron is at preschool and we haven't gotten a call from the nurse for a split lip or a bumped head! :)
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