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Guy Adam Niederhauser
10/20/2017 Latest post:
After a few months of sleepwalking and bruises, Guy Adam had his first tonic conic (previously referred to as grand mal, or convulsive) seizure in July 2015. He was evaluated and placed on meds, and carried on with life. In September 2015, he had four more convulsive seizures in one day. More meds were added and driving privileges were revoked for a time. After an MRI and consultation, he was diagnosed with left temporal lobe epilepsy. The cause is unknown.
With several adjustments in medications, Guy Adam has not had a convulsive seizure since November 2015. However, throughout the last two years, smaller seizures called "complex partials" have disrupted life. These present as 10-30 second periods of time where GA loses the ability to comprehend language and speech. They can be anywhere from 0 a day to 100 per day, with no pattern. Sometimes, he has an aura and the seizure lasts for up to 20 minutes, so he sits down until it passes. Other times, he is able to continue activity as normal.
Since medications have not been effective at eliminating these seizures, the neurology team at KU Med (who are excellent) are assessing other treatment options. In order to best identify where exactly in the brain the seizures are coming from, GA had a VEEG (Video EEG) in April 2017. For this, 5 heart monitors were placed on his chest and 27 electrodes placed on his scalp to monitor electrical activity in the brain. For a week, GA was in the hospital being monitored 24/7 with the hopes of catching some seizures on VEEG. This was successful, and helped the doctors get closer to the affected area.
The next step is to do another VEEG, but this time, with the electrodes inside the brain instead of outside the skull. On November 21st, GA will have an electrocardiograph (intracranial grid) placed. For this procedure, Dr. Nazarro, the neurosurgeon, and his team will drill 9-12 holes (about 2mm in size) into the skull. Then, they will place electrodes directly into the brain. GA's head will be wrapped and he will be in ICU for two days. Then, he will be transferred to the epilepsy monitoring unit, where he will stay for 6-14 days.
During that period, he will be off his meds and in bed at all times. The doctors will try to induce seizures so they can see them on an EEG from the inside. Once the doctors feel they have enough information, GA will have another quick procedure to remove the electrodes and be discharged. The recovery time is expected to be minimal if at all, though adjusting back to medication is always a taxing process that exhausts him.
The epilepsy team will use info gathered to decide whether or not GA is a candidate for another surgery to treat (maybe even eliminate) his seizures. The surgery is called a resection, and during a resection, brain tissue is removed. The November procedure and VEEG will tell us if the tissue causing seizures can be removed without interrupting his speech, comprehension, memory, personality, or other brain functioning.
Guy Adam is in good spirits, all things considered, and has a lot he's looking forward to once these surgeries are over. He is grateful for all the well wishes, and so thankful for his supportive friends and family, as well as supportive employers and coworkers and in the team at the Terrace on Grand.
We (probably mostly Mikayla) will keep this page updated as the process continues, so all the updates can be in one place for everyone who cares about Guy Adam, and so we don't have to repeat ourselves too much ;) We will also update with visiting schedule and information, and any other needs we might have for those who wish to help. Thank you so much for being a part of this journey - it is impossible to overstate how much your love and support is appreciated.
TLDR summary: Guy has seizures, surgery on November 21 will help figure out how to make them stop. Thanks for caring!
* If you're interested in donating financially, follow the "ways to help" link to the GoFundMe page, or go to gofundme.com/Niederhauser