My phone rang at 3:44 this afternoon, stopping my heart. Cleveland Clinic on caller ID. The call I’ve been waiting for since I contacted them over a month ago. Would they recommend surgery for Spike?
“Mr. Parrent, we have determined that your son has right frontal lobe epilepsy.”
“Yes, I know that.”
“We recommend resection surgery to remove the focal point of the seizures. Would you like to proceed?”
“Very well, I will get the process started and we will be in touch.”
“Wait a minute! I have a few questions!”
The staff at Cleveland has been efficient, accommodating and extremely competent but they haven’t lived the whole Spike drama the way the Duke team has. They clearly want to fix his problem but they don’t have the personal investment in him like so many others he has charmed, scared and befuddled. The Cleveland team also hasn’t yet fully comprehended the extent to which we get involved in analyzing and directing his care – or perhaps they have wisely chosen to ignore that part of Spike’s case.
Nonetheless, no one’s cutting my boy until I get all my questions answered.
During the remaining five minutes of the call, I found the answers were not at all what I expected.
In Spike’s epilepsy patient conference today, the whole team agreed that Spike is having focal seizures in a non-motor skills area of the right frontal lobe. The surgical team believes they can remove the focal point by taking a fairly large area out without any adverse impact on critical brain functions.
They believe they can do that NOW, without first placing a subdural grid. That came as a big surprise to me but before I could get too happy, the neurologist said the full team recommended further monitoring to reduce the resection area. However, they did not see any further benefit from placing a subdural grid. The extended video EEG recorded last week apparently gave them as much information as they can get from an EEG, internal or external, and the placement of a subdural grid would not be worth the risk of an additional surgery.
I found this to be very good news indeed as I have always worried about the risk of performing two full brain surgeries with no guarantee that a resection would even result at the end.
I figured my favorite new diagnostic tool, the MEG scan, had come through and produced a great map of the seizure focal point. The neurologist said that was not the case. The MEG had confirmed the EEG findings but the EEG itself had provided a clearer view of the focus. The MRI provided no additional guidance.
At this point, I began to worry. Ever since finding out last week that an EEG provides only a two dimensional rather than three dimensional view of electrical activity (and I may be simplifying here), I have been concerned that the best it can provide is the location of a vector of seizure focus rather than a single point. Apparently, the visible manifestation of the seizures guides the neurologists down the vector because they know which areas along that line are responsible for different seizure characteristics. For instance, the vocal characteristics indicate a particular area is involved as do the arm movements and eye turning.
Forget about Spike’s brain, MY head is spinning as I process all of this.
To be clear, the Cleveland neurologist did not explain any of that so I may have it all wrong. I have had to piece together my own functional/structural view of Spike’s epilepsy based on my readings, extensive conversations with the Duke neurologists and my own interpretation of all the doctor’s reactions to the various test results. That’s not the best way to build up detailed medical knowledge but I work with what I have. Yet another reason that I should probably not perform the surgery myself.
What the Cleveland neurologist DID tell me was that they recommend the placement of “deep probes” in Spike’s brain for further monitoring.
I have not mentioned the deep probes before because I did not expect them to play a role in the surgery. So much for my ability to foretell the future.
Deep probes are electrical sensors placed inside the brain rather than on the surface of it as is the case with a subdural EEG. They are inserted by drilling a series of “burr holes” through the skull. The good part, the very good part as far as I am concerned, is that the surgeon does not have to fully open the skull. Are you squeamish yet?
Placing the deep probes in helps the doctors determine (aha!) the depth of the seizure focus. Now you have that nice EEG vector plus a depth reading from the probe and you can triangulate right on the source of the seizure. If it weren’t Spike’s brain we are talking about, this would be pretty cool stuff.
As soon as I heard “deep probe,” all of this registered, which is a good thing because the doctor was ready to hang up and move on.
Feeling as happy as I have in quite awhile about the whole process (which, to be clear, is still not very happy but you take what you can get), I had two critical questions remaining.
“What are the risks of placing the deep probes?”
“The risks are much less than placing a subdural grid. There is less risk of infection and the patient is subject to much less trauma. Recovery is much quicker and does not require a stay in intensive care. The main risk is bleeding but even that is rare.”
Setting aside that reference to “the patient” instead of “Spike,” I quickly got in my final question before my time expired.
“Since the recovery time is less and Spike is firing plenty of seizures, how long would we have to wait before performing the resection?”
“Generally, we wait three months after the probes are removed before performing additional surgery because we want to make sure there is no bleeding.”
“Three months? Doctor, that is not going to work in Spike’s case. He’s having more than fifty seizures A DAY! He is rapidly losing coordination and is showing signs of motor skill impairment. Believe me, any risk of bleeding must be outweighed by the risk of further deterioration in ‘the patient!’”
That stopped the doc cold.
“I hadn’t thought of that in his case. He has so many spikes that perhaps they can get a reading immediately and perform the resection in the same OR session.”
That sounds great but just a little too off the cuff for my comfort. Let’s not make this up as we go along.
“I need to have you talk to the surgical team.”
“They should be able to answer any further questions. I look forward to seeing you next week.”
And with that, my time expired.
All in all, I feel better now that yesterday. There is at least the possibility that Spike could have therapeutic surgery as early as next week. However, there is also the possibility that he will have to wait months. I don’t think I’m signing up for that program. All of the doctors seem to be gaining confidence that they can localize the focus and that it is in an operable area. That is very good.
However, many new questions have surfaced that need quick answers. I also must admit to a little disappointment that the Magnificent MEG didn’t produce a map with a little arrow on it saying ‘cut here.’
The biggest question I have concerns two different recommendations from top neurology teams. Duke recommended a subdural grid and made no mention of probes (other than describing them last February). Cleveland doesn’t think the grid would supply any additional information. If Duke saw Cleveland’s EEG readings, would they see something different from their own extensive tests? Are the teams far apart in their view of next steps or is the decision between probes and grid a coin toss based on Spike’s overall case?
What I hope to do next is talk to the Duke team again and explain the Cleveland recommendation. I would really like to hear their reaction because they know Spike so well. Given the way they have treated us so far, I fully expect that they will happily answer my questions even though they know we are likely to go to Cleveland for the surgery. Frankly, I would be comfortable having any surgery done at Duke but that decision is not mine alone.
My worst fears were not realized today. I heard nothing to indicate that Spike is a poor candidate for surgery or that his chances of seizure freedom are low. (Come to think of it, I didn’t hear anything about his chances for seizure freedom and that is bothersome as that information is critical in making the final call on surgery.) Nonetheless, very important questions remain unanswered and that is somewhat troublesome as showtime rapidly approaches.
I am not sure how much my comfort with the style, as opposed to substance, of the two medical teams should matter. Both are world class. Cleveland has this air of superb efficiency that gives me some confidence. They handle these situations very frequently and they’ve got it all down to a system that works well. Duke provides a far more personal and truly compassionate touch while dealing with the same difficult cases.
I guess I am comfortable that both teams will provide the same level of care for Spike but that Duke provides far more care for me. I am not sure how important that is if Spike ends up healthy. Perhaps not important at all.