Monday, October 24, 2011

Gentlemen, Start Your Bone Saws

The surgeon's assistant called today and told me they were ready to go. All Spike needed was one more MRI and then they would operate on Wednesday.

In two days???

I explained that Spike is currently in North Carolina and it would be tough but not impossible to get him back to Cleveland by tomorrow morning for the MRI. As I ran through the logistics in my head, my heart started racing.  All this waiting and now everything was happening faster than I could react.

"Oh! I thought you were still here," the assistant said. "Next week would be MUCH better for us. Let's have him admitted on Monday for an MRI on Tuesday and surgery on Wednesday."

Ok, I breathed a sigh of relief. Well, half a sigh because I realized mid-exhale that Spike would have to wait another whole week! When it comes to brain surgery, I can't decide if quick or slow is better. Although I wonder what "MUCH better" means. Did they try and squeeze Spike in this week?

"Hey doc! This kid needs surgery pronto. Can you hurry up a bit on someone else and fit him in before lunch?"

Maybe waiting IS better. I want steady hands here, not a rush job.

So here's the schedule ... well, the provisional schedule. You see, the decision to proceed with surgery hasn't even been made yet. Spike's patient conference is tomorrow. All the doctors get together and review all of his tests, symptoms, medications and the phase of the moon and then decide on next steps. Everyone knows it is going to be surgery but I'm glad they are following protocol. After all, some doctor who hasn't seen anything on Spike just might pick out something important in a test result or scan and cause a rethinking of his treatment.

But that's not going to happen so here's the schedule.

Sunday: Drive to Cleveland
Monday: Back in the hospital
Tuesday: MRI
Wednesday: Surgery to place subdural EEG grid
Thursday: Recovery
Friday: EEG monitoring
Saturday: Dad's ready for the final surgery to begin but the hospital is empty
Sunday: Pray if you're a believer
Monday: Resection surgery
Tuesday: Recovery
Wednesday: Anxiously awaiting ... nothing because the seizures are gone forever
Thursday: Still nervous
Friday: Head home
Saturday: Enroll Spike in full contact football league. Eh, maybe not.

That's a long schedule. What does it all mean?

The MRI, I was very glad to hear, is a presurgical mapping of the skull and brain. I had wondered about this. Sure they know where the seizures are coming from but how does the surgeon know where to cut? Turns out they put little markers on his skull and then run him through the MRI. The images show the markers and the brain so the surgeon basically gets a little map to guide him. Presumably, once he gets inside, he can actually see the structure of the brain and therefore know where to dig. Kind of like the MEG but not nearly as elegant mathematically as those offset calculations.

Once the markers are on, he is ready for real surgery. This is tricky because the first surgery is yet another mapping exercise. It doesn't fix anything. A grid of sensors is placed directly on the brain to pick up electrical signals without any interference from bone, skin, hair, brain lining and all that stuff. This is important because you want to absolutely pinpoint the smallest area to remove AND you want to make sure that area is not critical to high brain function before you remove it.

Now comes the really hard part. Once the grid is in, you have to wait for enough seizures to give a good map of the affected area. In Spike's case, I suggest the surgical team plan a very short lunch break before going in again. Unfortunately, that's not how it works. They have to close up, let him recover, record the activity, analyze it and then go back in. That can take weeks for some patients because of their low seizure frequencies. Not an issue with the Spikester but he still has to recover.

There is a lot of optimism built into the schedule above. It assumes they localize the seizures quickly and find they are in relatively safe areas for resection (removal). There are two alternatives that cannot be ignored. If they cannot localize the seizures or if they determine the area is too critical (motor skills, irreplaceable cognitive zones, autonomic functions), they have to go back in, remove the grid, close him up and ... shrug their shoulders. A horrible outcome but one that occurs frequently enough that we must be prepared to deal with it.

Perhaps the worst, or at least most stressful, outcome would be something in between a nice clean resection and none at all. Again, two possibilities.

First, the seizures could emanate from a "mostly safe" area. The surgeon would then very conservatively remove tissue to avoid the critical areas. If the seizures are not controlled, he may have to go in yet again and remove a little more. I know a family that went through this. I'm told it was not fun. I believe that. However, in their case, success was finally achieved - and by the same team that will work on Spike.

The second in between outcome is really hard to contemplate. They may find that the focal point of the seizure is well away from autonomic and motor skills areas. Good. Very good. He would be able to walk and breathe. However, it may be close to a questionably replaceable cognitive area. Huh? It turns out that kids' brains are pretty good at compensating for the removal of certain cognitive zones. Another area of the brain just takes over. However (are you beginning to hate that word as much as I do?), there are some areas where the cognitive functions might not be fully replaced. Ok, I hate "might" even more than "however." In this case, you have to make a call on whether to proceed or not. Well, you don't, we do.

Personally, I haven't much used hope as a strategy. In this case, I'm willing to give it a try. I sincerely hope that I do not have to make a decision on whether to remove a questionably replaceable cognitive zone or leave the seizures untreated. I'm hoping really, really hard on that issue.

So the grid is in, Spike fires off plenty of seizures and they all point to a tiny spot in his brain that is responsible only for choosing the color of his car. They go in, remove that spot and Spike drives rust orange cars for the rest of his life. Good outcome.

Once he recovers from the resection surgery, Spike is free to go home. His sole responsibility at that point is to simply forget that any of this ever happened. That's what kids do. He'll have some cool scars to show off if he gets a mohawk but, since the Parrent clan tends to have full manes through our long, healthy lives (except for Uncle John - who just rushed to a mirror upon reading that), no one will be the wiser about Spike's childhood trauma.

Except for his parents of course. We are scarred for life and it doesn't take a bad haircut to see that.

2 comments:

  1. Tom - Thank you for the updates on Spike and allowing us to be on this journey with you. We have spread the word here to keep praying for Spike (and you of course). Please let me know if there is anything we can do...other than the obvious prayers

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  2. Tom, this sounds like a huge step forward. I'm glad you all have a few days (but not too many) to get ready. Thanks for taking the time to prepare such helpful summaries. They're obviously invaluable to all of us rooting for Spike, but also to other families who come across them who are struggling with the ups and downs of their own kids' medical journeys.

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