I'm More Than Unique

I was waiting for some news to be able to update with. I hope you weren't on the edge of your seat for too long. Let's start with the good. The rods are out of my brain and so is my VNS! YAY!!!!! Yes, it hurts. My head doesn't, just my neck and my chest. I have GREAT muscle tissue where that God forsaken device has sat, useless, for the last three years. Plus, I get to leave tomorrow or Wednesday. I lived!! There's the good news.



Not so good news: based on the information from the invasive EEG, I cannot receive the RNS. Let me tell you why.

I am an epilepsy study dream. My epilepsy is in it's own category, as far as we know. Dr. Constantino does not have and never has had someone like me. I've gone way outside the box! I haven't been able to find another case like mine either. I AM UNIQUE!

Enough bragging.

During my tonic clonic the other day, Dr. Constantino was able to see that both of my frontal lobes are active and it spreads rapidly. Not very unique I know. What makes it unique is that I have small seizures during my tonic clonics. They are just few seconds long. They also act independently from different areas of my frontal lobes. I AM MORE THAN UNIQUE!!! Those mini seizures during my tonic clonics are what ruled me out as a candidate. It's rather interesting and cool, but at the same time it's highly disappointing.

Don't worry though, Dr. Constantino isn't a quitter. She loves a challenge. What she and Dr. House will do is present my unusual case to the Epilepsy Board to request the Deep Brain Stimulation (DBS) Implant to be used to treat my epilepsy. That's not it's use in the U.S. It is currently used for Parkinson's Disease. It is used for epilepsy in the U.K. Hey guys!!! (The Trump baby balloon was FABULOUS!!!) Most sincere apologies for the visit from Hell.

If approved, I would be the first to receive the DBS to treat epilepsy in the U. S. of A that isn't from a clinical study (until I find out otherwise). That is most certainly damn cool.

verywellhealth.com

There's two ways I could leave this hospital. Poppy or Branch? Well, because of the "cool factor" I'm going to just add A LITTLE Poppy to my Branch. We haven't reached the Boyz II Men End of the Road. If my seizures all started at the same, then I'd be EFFED! However, since they all have their own little focal spots, my case gets to be argued. That still gives me a spec of light. 

I just want to know I've exhausted all options. ALL OPTIONS. Like I've said before, I've come this far for a reason, and it's not to say "Oh shoot-darn, better luck next time." WHAT NEXT TIME??? Which is exactly why I will just take this X-MEN mutant info about my brain and wait for a grand birthday present. You guys get to wait with me which makes it even more awesome! So hang tight and Ciao for now!

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