Sunday, May 22, 2011
Vagus Nerve Stimulator
Ben's neurologist thinks that the next step for Ben will be to implant a vagus nerve stimulator (VNS). It makes me so so sad to think of having to subject Ben to this kind of surgery. If we choose to go ahead with it, they will implant a generator the size of a watch under his left clavicle (according to other parents, this will be visible below his skin). They make another incision in his neck by the left vagus nerve and guide leads up through the skin to wrap around that nerve. They can program the device to send electrical signals at varying frequencies. I've heard from other parents that these devices often malfunction (and then are even left in), can cause headaches, coughing, and vocal cord damage, among other things. These decisions are incredibly hard to make for Ben. Of course I want to do what's best for him - while putting aside my own fears and sadness. But even in my most steadfast times, I don't know what is best for him. I think that holds true for decisions that people have to make in a lot of different areas of life. It's just that, in Ben's case, the stakes are so high. Do we go ahead with this surgical procedure and its risks, or do we accept that Ben has seizures every day? It would be a whole new world for us and for Ben if were allowed to live without daily seizures. Maybe it's worth the risks? Oh what to do?
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3 comments:
IT's hard to imagine having to make such decisions for your own kids all the time. Big medical decisions, with high stakes. I often agonize over such silly things, Edna Maguire or Tam Elementary school! Seems idiotic compared to this one.
It must feel like a tremendous burden to constantly be faced with these decisions. And it must be frustrating as hell to have to constantly make them - never ending seemingly.
I wish I had a magic wand or magic button!!!
with lots love,
Brac
Dearest Catherine and Aaron,
You are doing a wonderful job not only as a mother and father to Ben but as Ben's advocate. These are very heavy responsibilities. I know your decision will be based on information you have very thoroughly researched, talking to neurosurgeons and the neurologists, talking to other parents who have had VNS, and the possibilities for Benjamin.
Trust yourself and your instincts.
Lots of Love, Mom and Nana
Hi Catherine,
My sister is barreling forward with a VNS (but she's 35, so it's a different situation). Interestingly, she's never mentioned any of the side effects you've mentioned..she can be a bit impulsive.
Every single day I sense I'm not qualified to make various decisions for Milo, and every day I sense that my role as a parent gets undermined by the various things that therapists ask me to do. And I resent it all the time. And the resentment, not to mention the appointments, the worry, the stress, the fretting, the implementing 3 dozen things each day that I'm asked to do, is exhausting.
Close your eyes and sit quietly for 30 minutes, an honest 30, and the answer will come to you. And if it doesn't, at least you will have had a luxurious 30 minute break from the stress.
xoxo,
Brigit
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