Amundsen House of Chaos

Let's face it, when you have a kid who survived a stroke, life is always going to be a little chaotic.

Thursday, September 17, 2009

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Deep Brain Stimulation

So at Colby's Botox and Phenol appointment Deep Brain Stimulation was brought to our attention. I had heard about it before but it's kind of the last step for dystonia. I researched it about a year ago but we decided to try a baclofen pump instead. You actually have to do the pump first before you can even consider DBS. So we know have Colby's records at another neurologists office. She will review them and then let us know if he's a candidate. Kind of a scary thing. I don't know if I want him to be a candidate or not.

If they ruled it out then it wouldn't be my decision to have him go through another surgery. How chicken is that? All the articles that I have read on it talk about them being awake for the surgery and having to give feedback on the placement. One, how scary would that be for a 4 year old and two, how are you going to get feedback from a kid who's non-verbal? Anyway, this doctor is supposed to be good. Did her fellowship with some of the top people doing this type of procedure and all that good stuff. Still I'm not thrilled with the idea of putting electrodes into my sons brain. Can you blame me? Anyway here is a Wikipedia article on it if you'd like to learn more.

3 Comments:

At September 17, 2009 at 10:06 AM , Blogger Cyndi said...

wow. that sounds intense. hope everything goes good--- keep us updated.

 
At September 18, 2009 at 1:20 PM , Blogger Ryan and the Girls said...

WOW! I am not sure what else to say about it. I am kind of speechless. Please keep us updated on what you decide.

 
At September 18, 2009 at 6:25 PM , Blogger Erin said...

I know it's crazy isn't it? He is a candidate. The office is supposed to call me on Monday or tuesday to schedule an initial visit with the neurosurgeon. It'll be some time in Oct probably. The appt not the surgery. I want to hear what she has to say about it. Plus I want to talk to some parents that have made the decision too. If it helps it could be a huge huge help. But you know Colby so I don't know what the chance of it actualy working are. It would get him for sure off of 3 medications and very possible even off of baclofen. He could really learn to use his hands and legs again if the stupid muscle twitching and spasms would go away. I totally see the upside to it it's just Colby's previous history from everything that hangs me up.

 

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