John Toothman is scheduled for Deep Brain Stimulation Surgery January 2024.
John will not be able to work during his surgery recovery process which will include multiple appointments, adjustments, studies, fine-tuning by neurology team as they experiment with what works for John’s brain specifically. Over time, this device should learn what his brain needs in order to hopefully reduce seizures, and more importantly their life threatening intensity. Their household will be down to one fixed income while his wife Ashley has to limit her work outside of the home to stay with John. He will be unable to lift anything above 5lbs, for example, for at least 6 weeks. Any financial contribution is greatly appreciated and will help make this journey a little bit easier for John and his family. GoFundMe payments will go towards living expenses, utilities, daily living costs such as groceries/gas/etc as well as any medical costs while they tackle this battle.
John has had seizures almost as long as he can remember. As a child and teen he had frequent focal seizures, and wasn’t until his early 20s the seizures developed into unconscious & convulsive seizures (Gran Mal.) He was then officially diagnosed with Epilepsy and has been on anti seizure meds ever since. He currently is averaging multiple Gran Mal seizures a month, despite being on 4 different types of daily anti seizure meds. Johns seizures are particularly violent and life threatening that often require ER visits. Due to John’s type of seizures he is also at a greater risk for SUDEP. Unfortunately, John was recently diagnosed with Intractable Epilepsy, which is a type of Epilepsy that is resistant to medication. John cycles through medications several times a year, and ends up “failing” them each time. The chances of John being seizure free just from using anti seizure medication is now less than 1 percent.
Right before Christmas, John had 3 Gran Mal seizures and was admitted to the hospital for over a week. The severe seizures mixed with dehydration ended up causing an acute kidney injury which led to acute renal failure. We weren’t sure what his prognosis would be, but thankfully his medical team were able to stabilize his kidneys and get levels back to baseline. John’s team of doctors have indicated that his best chance of reducing seizure frequency and having a better quality of life with DBS (Deep Brain Stimulation) surgery. (He had laser ablation surgery last year. It was effective initially, but due to John’s extensive seizure network he continued to have seizures as the year went on, and has had multiple hospitalizations in the past couple months.)
DBS surgery is where surgeons implant small wires (called leads or electrodes) in the brain during a surgical procedure. The leads receive electrical stimulation from a small pulse generator implanted in the chest. The ultimate goal of DBS surgery is not to make John seizure free. That is not likely. We are however hoping this surgery decreases the frequency of seizures, lowers his need for medications, gives his kidneys a welcomed break, and most importantly improves quality of life for him and his family.
Thank you!