Sunday, April 24, 2016

Update: Brodie's Epilepsy Study Results


After 12 days in hospital for this epilepsy study I have my boys back home! I was able to pick them up on Friday afternoon. Angus was also with him from Thursday morning.

We now know exactly where Brodie's epilepsy comes from. In regards to where it starts in the brain. It's in his right temporal lobe (that's the blue part in the picture).

When Brodie has a temporal lobe seizure that is the only part of the brain that is affected. When he has a tonic clonic it jumps from right temporal lobe to the left and it causes the whole body seizure that we initially saw when he was first diagnosed with epilepsy.

Now that the doctors know this. Brodie was told he is a viable candidate for surgery. This is where things get a little complicated. There is a 60% chance that this will completely get rid of the epilepsy but there is a 40% chance that it will decrease the frequency.

Brodie was sent an email with details about what the surgery involves and the risks that accompany it. There is a 1-2% chance of infection or stroke. If a stroke occurs it will affect the left side of his body and may end up being permanent. There is also a 3% chance that his vision may be impaired. If it is there is a chance that it will be significant enough for him to never be able to drive a car, which is something he is desperate to learn to do. Brodie will still need to be on epilepsy medication, something he would gladly stop if he was allowed to, and he will still need to be on it for the rest of his life. He will also not allowed to be on his own for 6 to 8 weeks after surgery. Something I am sure he will not like. He complains now when I wont let him go for a walk on his own.

One thing we definitely know that will affect Brodie and it's the fact that the temporal lobe handles facial recognition and recall of names. He may struggle a great deal with this afterwards. That being said, we joked, that it may be like making new friends all over again. However, I can see it causing lots of frustration down the road even if he doesn't think it will right now.

Brodie will have the opportunity to talk with a patient who has had this exact surgery if he chooses to. I would strongly encourage this. He needs to know exactly what it involves and how it may affect his future. It's a big deal to have surgery let alone surgery on your brain.

For now we will all think about it, discuss it as a family, write down any questions we have, pray about it and talk to our Bishop about it.

Brodie has an appointment to see his neurologist in three weeks time. Hopefully by then we will have made an informed decision. I know ultimately it is up to Brodie. I can only help him work out the pros and cons. He's the one who lives with his epilepsy. Only he can decide.
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