Dylan’s Brain Surgery Story

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Dylan Hungate has been a member of the CrossFit Flagstaff Family for many years. He started coming to CrossFit Kids when our program started in 2008.

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We have watched him grow up at CrossFit Flagstaff into the amazing 16 year old young man he is.

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He continues to grow as an athlete every day and as you can tell from  the photos over the years he has always had a fire in his eyes and grit and determination in his heart!

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Dylan has been dealing with epileptic seizures for as long as he can remember. Please read the post below from Bruce and Jane about his surgery.

This past Monday June 1st Dylan began his stay at the children’s hospital at UC San Francisco where he’ll have brain surgery for epilepsy. We will use this site (caring bridge link at bottom of this post) to update you on his progress through the procedures, and we’d love to hear from you here as well. Here is a little background on Dylan’s condition and an overview of the upcoming procedure. Dylan has epilepsy, which is a catchall term for a condition involving chronic seizures. Seizures happen when clusters of neurons in the brain become active for no obvious reason, and that electrical activity spreads, interfering with the brain’s normal functioning. Most of Dylan’s seizures are partial, meaning they stay on one side of the brain. They usually last for 30 seconds to a couple of minutes. When Dylan has a seizure, he has a hard time speaking and understanding what’s going on around him, and he is exhausted afterwards. You could be sitting right next to Dylan and not know that he is having this kind of seizure. Dylan’s had these seizures for as long as he can remember, but they had little impact and nobody noticed. In the last three years, he’s had a few generalized seizures, sometimes called “grand mal” or tonic-clonic, and these led to the diagnosis we have now: temporal lobe epilepsy.We’ve explored thoroughly the many ways to manage epilepsy over the past several years since Dylan was diagnosed. We’ve consulted in person with doctors in Paris, Phoenix, New York, and San Francisco, and by email with a few others as well, and we’ve read about all the mainstream and alternative ideas about seizure control. Dylan’s been tested in all kinds of ways to try to understand his condition. The consensus is that, in Dylan’s case, surgical resection may be an excellent option for long-term seizure control. There is one more important test to be sure, which requires surgery, and that is what’s scheduled for Monday (1 June). If that goes well, the plan is to have a second surgery a week or so later. The hope is that second surgery will remove the very small part of his brain where the seizures start. This should reduce or even eliminate the seizures he’s been having for as long as he can remember.

Bruce Mohak Dylan Mohak

Dylan: “Dad, will I have to get my head shaved”. Me: “Yeah, I think so. Maybe a Mohawk.” …pause…”Want me to get one, too?” Dylan, smiling: “Yeah!” Here is the result

 What will happen? The first step is to figure out more precisely where the seizures start. We already know they start in his left temporal lobe, but we don’t know exactly where, and we need to know where, because he uses his left temporal lobe for language and memory. To figure this out, a grid of electrodes embedded in a plastic sheet will be placed directly on the surface of his left temporal lobe and a few more will be placed deeper inside (to the hippocampus and amygdala).

Dylan's Brain

This is an image of Dylan’s brain. It shows one set of electrodes they installed on Monday June 1st.

Then, for the next 5 days or so, the team will record and map exactly what happens during his seizures – where they start and how they spread. They’ll also map important functions in his left temporal lobe, watching the patterns of electrical activity when he does tasks using language, memory, music, etc. The hope is that the seizure focus and the useful parts of his left temporal lobe are separate enough that the seizure focus can be removed safely. We’ll know more about this over the next week or so.

Thanks for reading and please feel free to send Dylan your thoughts and wishes using this site.

Dylan’s Caring Bridge Site where updates are posted daily.

Click this link to see a cool video of Dylan’s brain responding to a variety of noises.

Dylan all of us here have you in our thoughts and we are sending tons of love and positive vibes your way. We wish you a speedy recovery, and hope that the seizures are coming from a part of your brain that can be removed!

Comments

  1. Sara Klause says:

    As Dylan’s third grade teacher, I know just how exceptional he is. That brain of his soaks up anything and everything, far beyond the norm. His experiences in life have given him multiple languages that he can use to negotiate the world, that most teenagers (at least here in the U.S.) cannot. Wishing Dylan, Jane, Bruce, and Nona the very best outcome! Love and hugs!!!

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