Spike's neurosurgeon came in early this morning with some excellent news. All of the EEG, MEG, SEEG, MRI, CT, PDQ and XYZ tests are in concordance, pointing to a seizure focus in the right frontal lobe, as we knew. The latest analysis of the SEEG readings, however, pointed to a small and well defined focal point in the anterior portion of the right frontal lobe. Small and well defined are descriptions we have waited nearly a year to hear. Even better, anterior placement means it is in front of the primary motor cortex. The surgeon told us that Spike is an excellent candidate for surgery and that he should expect a favorable outcome.
Now THAT'S good news!
The only question remaining is whether to remove only the focal point or take a larger chunk. A small resection has less risk of surgical complications such as bleeding or stroke, less risk of loss of function and quicker recovery. A larger resection has a greater chance of rendering Spike seizure free. My feeling was that the surgeon favored a smaller resection because he feels that the area of concern is no so well defined.
Just as I was getting used to good news, he said that also plans to remove the supplementary motor cortex (SMA) because of its proximity to the seizure focus. Three words that I do not like in one sentence are remove, motor and proximity. He explained that this could result in some motor skills deficits but that they should completely resolve themselves within a short time (six weeks or six months - I heard both). Apparently, these deficits, if they occur at all, always resolve in young patients. A little physical therapy is a small price to pay, in my opinion, if it means a greater likelihood of seizure freedom.
He talked us through the procedure and recovery and we felt more comfortable than we have in a long time. He said the cortical stimulation would go forward as planned just to make sure the primary motor cortex geography was as expected. Once that was done, the docs would conference on Spike and he'd be ready for surgery first thing Tuesday.
Out of an abundance of caution, I asked what should have been my final question. Would he perform the actual resection personally rather than handing off portions of it to an intern or whatever they call surgeons in training. He assured me that he would perform the resection personally. I should have shut up at that point but, being me, that was unlikely so I asked a final, somewhat indelicate question just for general information.
"When you performed your first resection, how did you tell the patient and family that it was your first?"
He looked a little stunned so I explained, "I was just wondering how any surgeon informs the family that this is his first operation."
I heard a helicopter overhead. I chose to believe it was one of the lifeflight helicopters that are constantly coming and going. I didn't want to look out the window to see if it was actually a black helicopter with AMA on the side ready to swoop down and carry me away.
The surgeon stumbled a bit with the answer and said that, unlike other professions (such as my own), surgery involved over 10 years of careful study. I let it go at that, not wanting to make him any more nervous or bring down the medical profession hounds on me. We wrapped things up and he left but then returned just a few minutes later with the surgical consent form.
"I just thought we could get this paperwork out of the way today instead of in the morning."
I think he wanted to lock in this slightly kooky family. He was probably thinking, "First they thought I was young and inexperienced, now they don't want anyone but me touching Spike - what is it with these people?"
At this point, for full disclosure, he stated clearly that residents would be assisting him in various tasks but that he would perform the entire resection himself.
If there were going to be a next time - and there won't - I think I'd leave off that last question. (Admit it, you're still wondering about the real answer to the question.)
The cortical stimulation team then arrived in several waves with technicians, doctors, engineers, interns and fellows. They plugged stuff in.
Eventually, the doctor who would actually run the test arrived with his team. A rather energetic Spike greeted them by ignoring them. Not a good sign when his participation was crucial to successful completion of the test. The poor guy is just tired of all the new faces. Unfortunately, he had napped following another epic seizure cluster so he was fully loaded for chaos - while tethered by a dozen wires going deep into his brain. Just part of the adventure.
The test lasted several hours with lots of whispering, nob turning and note taking. The doctor had amazing powers of concentration, watching for tiny movements of various muscles as Spike bounced around the bed, watched loud videos, played games and threw toys.
In the midst of all this, the neurologist who had spent the most time with the SEEG results came in to observe for awhile. This is the guy who thought the focal area was dangerously large last week but then ran additional tests that showed he could significantly narrow it down. Spike's main Cleveland neurologist then stopped by the increasingly overcrowded room to give us a near final update even as the test was being conducted. According to the doctor, Spike was an excellent surgical candidate with a good (but unspecified) chance of success. Unless the stimulation test surprised everyone, and the stim doctor indicated everything so far was looking fine, Spike would undergo a major resection of the right frontal lobe after his patient conference Tuesday afternoon.
As toys flew past my head, I tried to clarify several seemingly contradictory statements. "I thought he was going into surgery first thing Tuesday. How can he do that when his conference is Tuesday afternoon?"
The SEEG neurologist said something about "it' happening Tuesday afternoon. I took him to mean the surgery but the other doctor understood him to mean the patient conference.
"Well, a day's delay at this point doesn't matter much," according to the doc.
"Wait a minute," I said. "Everyone has a different idea about when things are going to happen. It also sounds to me like you have different ideas about what is going to happen."
"These are all minor issues that will be resolved in conference. We are largely in agreement."
"The surgeon just told us that he believes he can take out a very small area but it sounds like you are thinking more."
"The more you take, the more certain you are of the outcome. That will be my vote."
Is this a democracy? "Ok, but he also said he was planning to take out the SMA, do you agree?"
"No, that doesn't sound right. Trust me, these are all minor issues." Minor. Like 'where to cut?'
I was on the verge of getting visibly agitated. Invisibly, my innards were churning. Had anyone talked to anyone else???? There were at least three schedules that various doctors believed in, two and possibly three forms of the procedure and who knows what various people thought about Spike's prognosis. I was also observing, in real time, miscommunication between two of the neurologists. It was only about scheduling of the conference but if that couldn't be clearly communicated, who knows what else was going on? I felt like screaming.
I kept my cool and let the two neurologists get out of the chaos as the test continued. I am certainly going to review the patient conference findings VERY carefully - especially if they hold the conference before rather than after the surgery!
Several hours into the stimulation test, the doctor told us he was now going to activate the electrode closest to the suspected seizure focus. Spike immediately went into a pre-seizure attitude. The doc and techs jumped but we said it was ok, we are used to this, just do what you need to do. They did not want to cause a seizure but i wanted to make sure they got all the data. A couple minutes later, of course, Spike had a seizure but it was no worse than normal. That came pretty much at the end of the test.
The good doctor then did two things for which I am extremely grateful. First, he explained that all of the stimulation tests confirmed the suspicion and hope that the seizure zone was in an operable area. No waiting for test results and further analysis, just a straightforward and immediate explanation.
"The focus is well forward of the primary motor cortex."
Phew! Yippee, even.
"At least one or two centimeters."
Huh?!?! Gosh, I hope they use thin, sharp knives.
Second, much to my surprise, he said "You are correct that the two neurologists were talking past each other." I don't know how he could have heard that with everything else going on - amazing concentration and noise filters. "Don't worry about it though. The patient conference really is the place where everybody finally sits down and carefully considers all of the information."
"So, the conference is not simply a formality?" I asked.
"Absolutely not. The conference is the most serious thing we do. There are 15 doctors involved and they are all focused. Everyone is heard and the issues are carefully discussed."
"Will you be there?"
"Yes, and I will make sure everything is clear."
Good. I still feel a bit uncomfortable but better having heard that. Except...when will the conference be held? The operating room was reserved first thing in the morning on Tuesday and here it was Monday at 5 PM.
The surgeon stopped by a little later to clear that up.
"We have Spike scheduled for 1 PM tomorrow (Tuesday) so he will not be first. That's good because his will be the only surgery I am performing at that time."
Wait a minute. 'The only surgery I am performing at that time?' What does THAT mean? Does the surgeon sometimes perform multiple surgeries simultaneously? That's sure what it sounded like.
I opened my mouth to ask but bit off the question. I don't need any more indelicate general information so long as Spike is the only patient during his own operation.
So, everyone is finally ready to go. Not all in the same direction or even at the same time but ready they are - and increasingly optimistic too.
That gives me comfort. I guess. The real problem here is that no single individual appears to be coordinating Spike's care and schedule. That leads to way too much stress for the family. Unnecessary too in my opinion.
I'll let you know how it all turns out tomorrow or next Wednesday or whenever. I'll tell you one thing - I'm not leaving Spike's room until I personally wheel him into anesthesia and check everyone's nametags. I worry if step out before that, Spike will be whisked away for who knows what procedure.
All right, I can't end on that note. The news today WAS good. The seizure focus IS in a relatively safe area. The surgeon appeared VERY optimistic. Last week, heck, last night we didn't know for sure if surgery was feasible. It now looks to be feasible, relatively safe and likely effective. That's what we have been waiting for.