Thursday, October 20, 2011

The Long Wait Is Over, The Intense Waiting Begins

Spike finished his penultimate test today, the previously described super duper MEG scan. He has yet another MRI tomorrow and that's the end of it. There simply aren't any more tests to run. His case goes to a patient conference on Tuesday where all the specialists gather to opine on the best course of treatment. We fully expect the Cleveland Clinic team to recommend the placement of a subdural EEG grid to determine whether resection surgery is warranted, likely to be effective and likely to be safe.

Even though we expect a recommendation to proceed, the next four days will be long ones, spent wondering if anything shows up on the MEG or MRI that would reinforce or contradict the path towards surgery. If we move ahead with a subdural grid placement, another intense period of waiting begins as the data comes back from the grid. Everyone hopes that the data points to a small, well defined area in which the seizures begin. If we can identify that area then an intense discussion will follow concerning the possibility of any loss of critical brain function that would occur as a result of its removal - the seizure foci, not the whole brain!

There are many possible reasons at each step of the process to simply stop and forgo resection. Evaluation of each reason and its implications will likely make this the most stressful period of the illness to date. We know that anyone could pull the stop lever - and while that may be appropriate, Spike would be left with almost no other treatment options. Nonetheless, we all have to be very careful to not let that reality cause us to dismiss valid reasons to stop. Nobody wants to do anything that would put him at even greater risk.

If the grid shows a nicely bordered, harmless focal point for the seizures, we begin yet another stressful waiting period - the five or so hours needed for the resection surgery. THAT stress will make everything that came before seem carefree in comparison.

Finally, if the surgery proceeds without any complications and Spike comes through the initial recovery well, we all begin the longest period of stress - waiting for the rest of his life to see if the seizures have been eliminated. You can never say with certainty that the seizure disorder has been cured. The best you can say is that Spike has not had a seizure in w minutes, x hours, y days, z decades. A nice clean EEG following surgery would certainly reduce the anxiety but doubt will be ever present.

So what are the chances of total seizure control? Based on my conversations with nearly a dozen neurologists and reading countless articles on the topic, I would put the seizure free probability at around 36% right now. That number will likely jump to >50% or near 0% on Tuesday, based on the results of the patient conference. Generally, surgery is not recommended if the likelihood of success is less than 50%. In Spike's case, the alternative gives almost no hope for control - other than him simply growing out of the disease (which is a very remote possibility in his case). If surgery is recommended, the doctors should be able to give us a little finer view of likelihood of success on Tuesday. Once the subdural results come in, the likelihood of success again splits to near zero or something higher than 60%.

That's a lot of numbers to throw around and mostly we just have to wait for the process to play out. However, I believe it is emotionally and mentally important to keep in mind that total seizure control at this point is, in fact, unlikely. That leaves a lot of potential good news while being realistic about potential long term realities. Of course, many, perhaps even most, people prefer to focus on only the positive possibilities. Many people believe such focus can even affect the outcome in a positive way. They may be right but I think it would be irresponsible of me to ignore potential negative outcomes. For one thing, using hope as a strategy causes you to vastly underestimate risk. The risks we are taking here are with Spike's life. The last thing I want to do is underestimate those risks.

Enough of all that uncertainty for now! How about a little narrative of the MEG procedure?

Spike is finally beginning to show a little impatience with the parade of doctors, nurses, technicians and orderlies. When the EEG technician came in to place five more electrodes prior to the MEG, she asked the usual "How are you doing today, Spike?"

His replied, very slowly, emphasizing every word, "I am a very sick little boy. That is why I am in the hospital. That is why I am having a MEG scan."

He's got a point.

Once in the MEG lab, they put on a fancy pair of glasses and then a headband to set up reference points for measurements. This was pretty cool to a geek like me. As near as I can figure out, what they do is place five special electrodes and very precisely map their placement on his head relative to all the other EEG electrodes. This MEG scanner itself has 300 sensors surrounding the skull. The patient must lie relatively still but the head is not held in place. Rather, the machine must monitor the position of the five electrodes on Spike relative to the 300 in the machine and then continuously calculate offsets to compensate for any movement. To me, that's a pretty elegant alternative to locking the skull in place for an hour. You use math instead of mechanics.

Unless Spike is in the machine. More on that in a moment.

Once all of the measurements are done (and, I was gratified to see, very carefully confirmed with a second reading with an error tolerance of only a millimeter), they pass a big ring around his head and arms. This is to demagnetize any stray current arising from his body. They really should play New Age music in the background while doing that. Looks like modern voodoo to me but I guess it makes a difference.

Once his chakra or whatever is aligned, they bring him into the MEG scan room along with me. I am there to help keep him settled down (why don't they try someone who has NOT consistently failed at that task?). Since my aura is all powerful, I have to strip down to nothing but a surgical gown. They were supposed to demagnetize me as well but either forgot or decided I just didn't have a lot of life force flowing through me.

The room is carefully sealed from all outside interference (I think this is where Dick Cheney spent most of his Vice Presidential years), and the technicians and engineers ask both of us to stop moving for an hour or so.


Spike starts beating out a bongo rhythm on the scanner while kicking his legs in at least four dimensions. I don't think they have the math yet to normalize that type of interference. Sedation is not allowed because it would interfere with the test. They also can't have a TV or anything in the room because of its energy waves.

So they ask me to tell him a story to calm him down.

Wait a minute.

He's in a hermetically sealed, lead lined room. I am not allowed to move or even wear glasses. They have to run algorithms to cancel out any residual effects of everything from sunspots to a truck passing by a block away. Sedation is not allowed. All of these measures are in place because of the subtle effect they can have on his brainwave patterns.

Yet, I can tell him a story? Are they implying that my stories have less impact on his brain than the gentle lapping of Lake Erie waves on the beach a mile away? I think I'm insulted.

Two minutes into the story, he was snoring softly. Bad kid.

He gave them three nice seizures while in the machine. The techs jumped with joy at this unexpected treasure trove of data. I don't think they correlated the seizures with my storytelling but I'll have to wait for the final report to make sure.

Once they do all their number crunching, the engineers will hand off the results to a doctor who will have a nice three dimensional electrical/structural picture of Spike's brain. He should be able to abnormalities that pinpoint the focal point of the seizures. If they do get a clean picture of the abnormalities, the surgeon gets a nice roadmap to follow in resection. They will probably still place a subdural grid to confirm everything but a good MEG map would be a huge diagnostic plus. We should know a lot more about the results on Tuesday.

So the waiting begins anew. At least this time it can be accompanied by cheeseburgers and that makes it more tolerable for everyone.

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