In case you are just joining us on this blog adventure, my husband Dan was diagnosed with glioblastoma (brain cancer) in April 2013. Thus far we have been incredible lucky. Most people with glioblastoma do not make it very long. Not only has Dan survived, but also he hasn’t had a recurrence which is almost unheard of.However, Dan has seizure type activity every day and many days this painful squeezing, burning, pin pricking, and tingling feeling will last for hours leaving him exhausted.Over the past few months we have watched his health decline and his activity level fall to, well, let’s just say he’s watched every episode of Seinfeld, Cosmos, Comedians Driving Cars and Mash.Our Epileptologists at home have not been able figure out how to help Dan.The meds aren’t working (refractory epilepsy), and my husband is straight up miserable.Thus we are at the Cleveland Clinic in Ohio.
Dan in his favorite socks.
Their amazing team is trying to find out if Dan is a possible candidate for epilepsy surgery.The first step is to hospitalize him and pull him off his meds.They want him to have seizures so they can measure the activity and try to figure out where they’re coming from.
Below is a cornucopia of multi-media goodness that will hopefully give you a peak inside the madness of our first day here at Cleveland Clinic. On day one, Dan had an MEG and then was admitted for his five day EEG.
I know the amount of videos look daunting but they’re short.