Saturday, October 15, 2011

Headed to the Rock n Roll Hall of Fame

Spike is a rocker at heart so it's only appropriate that he should see the hall of fame before he sees Disneyland. While's he's in Cleveland, he plans to stop by the Cleveland Clinic for another couple dozen tests to see what the heck is going on in his head.

We head out tomorrow morning for the nine hour drive from Raleigh. The weather looks good and the timing could not be better  as the autumn colors are filling in nicely along the way. The route is a beautiful drive through the mountains of Virginia and West Virginia followed by some very nice hilly country all the way through Ohio.

We will know a lot more in a few days but we expect the good doctors in Cleveland to confirm Duke's recommendation of a two part brain surgery. If we go forward with the surgery it will look something like this. First, they place an intracranial EEG grid right on his brain (that sounds fun!). Then they wait around awhile for the leads to pick up a few seizures. This can be a tense period as you are simply waiting for seizures to happen. Of course, Spike is such a good little patient that he accommodates the tests by firing off dozens of seizures every day! Thanks little guy.

Once they figure out the origin of the seizures, they then assess (guess) whether removing that part of the brain would affect anything important like, oh, breathing for instance. In his case, what we can tell so far is that the seizures are coming from the right frontal lobe and, specifically, an area that does not impact motor skills, cognition or anything else important. So what's it there for???? Just to cause seizures I guess.

Once they determine the area is ok, they put little Spike and his parents through lengthy neuropshychological testing. I don't know what happens if I fail the test but he can't fail - they are just setting a benchmark so they can reassess post-surgery (a little late then it seems to me).

Once all that testing is complete, they pull out the chainsaw and ice cream scoop and start digging. If they get all the nasty bits then he just might come out seizure free forever and ever. If they don't, well, been there, done that.

What we don't quite understand is why he would have to remain on anti-seizure medications following surgery. If his EEG is nice and smooth, the seizures are gone but the docs usually keep the drugs flowing - sometimes for six months, sometimes for life. I will be digging into the rationale behind that because I want him off as many drugs as possible before surgery. Right now, the seizures are bad (44 yesterday) but the drug side effects are far worse (yet another reason to not keep a loaded gun in the house). Yesterday, Spike tried to drive the truck away from the hospital. In the time it took me to get out and walk around to his door, he had released himself from the car seat and was sitting behind the wheel trying to put the key in the ignition. Good thing it was the boat key.

I will keep everyone up to date as the adventure continues.

As always, thank you for your good thoughts.


  1. Hi Tom,

    The internal EEG sounds just like what my son had done. They will capture "enough" seizures to know where they are triggered--if Spike's having that many, shouldn't take long (few days at most I would think).

    Then, if they do what they did for Allen, they will leave the grid in place and "bench test" him. Basically, they put a small electrical charge through each of the pins while doing a neuro exam (touch your nose, say "cat", etc). They are looking for "good" brain function. This was both fascinating and horrifying to watch, as some of Allen's jolts caused seizures, some caused him to stutter, some caused him to lose speech, and some caused facial muscles to twitch.

    Armed with both good and bad brain areas, if possible, they can surgically remove the bad areas triggering the seizures. I hope it works as well for Spike as it did for Allen.

    His surgery took about 4 hrs (IIRC), he spent a couple days in ICU, a day in regular, then out in less than 5 days. He's been seizure free since, but still takes anti-S meds.

    Hope this helps. Email me if you have questions or wanna talk.
    Ron, Ks, Mac 26X

  2. Oh, additional comment:

    The key to getting off the anti-S meds is to have a clean EEG. Both wife and son's eegs still show abyynormal impulses (not really seizures, but not really clean either).


  3. Good wishes, thoughts and prayers for your whole family as you continue on this journey.

    I don't know any other little guy tougher than Spike nor a father more committed to his son.

    Thanks for sharing and from your whole Trailer Sailor family we look forward to the day he is seizure free!

  4. Thanks for the description Ron.

    Some great pictures. :)

    Will you do the actual surgery, if any, back at Duke?

  5. Tom
    Thanks for sharing the continuing journey with us. A few years down the road, we can reflect on this season and understand why. Meanwhile, keep the faith.

    Praying for a good outcome - Jocelyn