It has been quite an eventful summer to say the least. So much has happened in just a few months but I will try to keep this update as short as I possibly can. (You know how hard that is for me, right?)
In the spring Tyson started experiencing absence seizures. These aren't the convulsing type of seizures but they're similar to focal awareness seizures, where he stops what he's saying and doing, has a blank stare, and is unresponsive to sound or touch. It looks like he's completely ignoring us. When it's over, sometimes he remembers what's happened or what we've said to him, sometimes he doesn't.
His family doctor suspended his driver's license and referred him to a neurologist and ordered a brain MRI. We got a neurologist appointment at Brampton Civic for August 17 and a brain MRI appointment at Orangeville Headwaters for June 29.
The first week of July Tyson had a cardiac catheterization procedure at SickKids for some 'routine stents.' Unfortunately we learned that it was too risky to proceed with the stents for various reasons, so he's looking at open heart surgery sometime in the near future. I already blogged about all of those details here.
The same week that we learned he would need open heart surgery, we got a phone call from his family doctor about the brain MRI results. The MRI revealed a very large cyst in the left frontal lobe of Tyson's brain. The cyst is 8 cm large (8cm X 6cm X 6cm.) so his referral to a neurologist would be advanced straight to a neurosurgeon.
This was a lot for us all to process...not understanding much about brain cysts at all...could it be cancerous...would Tyson need to undergo brain surgery...can they remove or drain the cyst? ...all the while we're still processing that he's going to need open heart surgery... and Tyson is not yet back to work because he's still recovering from his heart procedure...so he's still having to take it easy...
Last week Tyson saw a neurosurgeon at SickKids. We learned that the cyst is not cancerous, and is an arachnoid cyst that was most likely caused by an ischemic event during one of Tyson's heart surgeries as a baby. Meaning: he likely had a "silent" mini stroke during one of his surgeries. Because the cyst has been there so long, Tyson's brain has remodeled around it and the surgeon said that surgery is not the recommended treatment plan because it would create more problems than it would solve. There are too many risks associated with removing or draining it. So the current treatment plan is medication with the goal of seizure management. Rather than experimenting with different meds (which have side effects,) Tyson will first need to undergo an overnight EEG to record his brain activity while he sleeps. This will help them figure out exactly where the mis-firing in the brain is happening and prescribe the right med for him.
Of course we are all relieved that Tyson won't need to undergo brain surgery at this time, but the thought of the cyst just hanging out in his brain is kinda eery and still leaves us with a level of uncertainty and unanswered questions. These will have to wait until we can talk to the neurologist assigned to him.
In the last five days, we have taken Tyson to the ER twice for different kinds of, potentially progressing, seizures. Last week in the middle of the night he was having very strange symptoms, so we drove him straight to SickKids quickly. After testing and making sure he was stable (and losing a whole night of sleep) they allowed him to go home. Then yesterday morning when he got up for work, he told us he was pretty sure he had a convulsing seizure, so we brought him to Headwaters. Based on the work-up and tests that were done, it indeed looks like Tyson has experienced a tonic clonic seizure (the convulsing kind.) So right now his seizures are getting more frequent and more serious. It's imperative that he has an EEG as soon as possible.
Unfortunately SickKids neurology is extremely backed up and they won't be able to prioritize Tyson for an EEG because he's almost 18 and is soon phasing out of SickKids. But thankfully we kept that appointment with an adult neurologist for August 17 at Brampton Civic hospital that was booked way back in May. They will be able to order him an EEG a lot sooner than SickKids can.
So we hope to learn a bit more on Monday about what the plan is to manage these seizures. Until then, we keep taking it one day at a time. And some days it's one moment at a time. We keep putting one foot in front of the other. And somewhere between one step and the next, God keeps meeting us along the way.
Please pray that He continues to give our family strength for today and hope for whatever tomorrow holds.
