Tuesday, November 8, 2011

INXS Show Requires Some N'SYNCH Reply

Spike, the one man boy band of the EEG airwaves fired off 69 seizures today before 10 PM. I think he was trying to make a point. It's time to do something about this, so synch up docs and dig this junk out of my head!

The docs finally did get together this afternoon to more fully discuss little Spikeroo. The consensus view, which was represented to us as unanimous, is to remove the anterior mesial portion of the right frontal lobe including the supplementary motor area. Okey doke, I'm sure glad I've been boning up on my anatomy.

That gibberish means they will take a big chunk of the the right frontal lobe but not all of it. Think of the area as a slice beginning at the top of the forehead just right of center (when facing forward). The slice would come down the forehead but not too much towards the right side of the face before going back almost halfway into the brain. Kind of like one of those slices of fudge they make in tourist towns. Take a slice out of the middle of the fudge plank. Hope you weren't eating dinner while reading this!

They think the seizure area is localized enough that they can leave quite a bit of the lobe untouched. That reduces the chance of seizure freedom while also reducing surgical risks. It's a tradeoff with which I am comfortable. If full seizure control is not achieved, they can always go back and take a bit more out.

Now for that pesky supplementary motor area. It's a goner because the seizures appear to be firing right through it. The SMA apparently controls some coordination between the two sides of the body, among other things. The long term effect of removing it from a healthy four year old is minimal because other areas of the brain take over for the missing tissue. In the short term, up to six months, removal may result in significant movement deficits on the left side. The degree of possible deficit did not come out until I asked one of the neurologists what recovery from the operation would look like.

"If everything goes well, you could be out of here in five to ten days. Then you either go home or to a rehabilitation hospital depending on the loss of function."

Rehabilitation hospital???

Removing the SMA, it turns out, can even result in transitory paralysis. Well, hello side effects! The key word is transitory, especially in youngsters. Let's just hope Spike's transitory motor deficit is minor and very transitory. It's not as if we are not going forward with surgery, so let's just deal with it and get going.

Credit to the medical team and two doctors in particular for bringing together the analysis in a way that satisfied us. It took longer than expected (but we are on one heck of an accelerated schedule compared to most people) and a little bit of in your faceness by Spike's Dad but they got it done. Furthermore, the two physicians in question spent a lot of time today discussing details and answering questions. I think they are finally beginning to accept how I advocate for Spike. I have also noticed that my requests for drug changes are going through much more quickly now. If I ask for an emergency medicine, it's usually approved within five minutes. When I refuse suggestions on other drugs, I have not gotten pushback lately.

You have undoubtedly noticed that I never mention medical staff by name. That makes the writing a bit disjointed at times but it allows me a bit more freedom to express my opinions. At the right time, I will shower credit upon those who deserve it.

There were a couple of unintentionally funny moments, presented seriously, in conversations with the surgeon.

Yesterday, we asked questions about the frequency of several different surgical complications. His answer each time was "I cannot recall the last time that happened." Ok, but are you very good or simply forgetful?

Today, the surgeon offered to add Spike to the day's schedule after all the other surgeries were complete so that the conference on Spike could be completed. "That will make it a long day but we can do it..." with shaky hands and grumpy assistants I bet! No thanks.

Spike goes to the surgical center at 7 AM. Cutting commences at 8:30 AM. The Back Room Boys are ready to rock. Or so I've been told.

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