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Wednesday, February 23, 2005

A Rant: Funny thing brain surgery

Most of the family is up-to-date on happenings with my Mom's adventures at the Barrow Neurological Institute.

We must remember to be grateful that we're so close to this wondrous institution, and yet, I hope we never need their services again. Ever.

In the past 5 months, Mom has successfully had two anyeurisms clipped and one AVM (strange tangle of blood vessels) removed from within her brain. Yes, brain surgery is somewhat common these days, at least to the neurosurgeons. But there's nothing "common" about watching a once determined and independent woman suddenly forget who she is, who you are and what day it is! That happened with the first bad fall and blow to her head in June, then again after the first surgery in October. They explained to us that loss of memory, speech recognition/recall, and occupational abilities were common with the type of injury and surgery she had. Mostly, the damage affected the left half of her brain, which is where those functions are controlled. OK, she got through it and began to regain all memory and speech. Not a piece of cake, but a big sigh of relief for sure.

But then, with the next planned surgery on the right-half of her brain, we were told to expect some temporary loss of fine motorskills, sensation or feeling in the limbs, etc. We knew it would be temporary, and at most, frustrating for Mom. What we weren't prepared for were the gran mal seizures! I believe my step-father lost about 10 years of his lifespan in the course of about 4 days. While the hospital staff reassured us that they were somewhat normal after an invasive brain surgery of this type, it was very hard for us to watch. Especially, when the last one happened while my sister was staying with her at home. The seizures were supposed to be under control. Our family has no experience with this sort of ailment, and the sense of panic and fear were palpable in all of us.

I can say, I feel as though I've learned an awful lot about how the brain works. But it sure would have been nice if the hospital could've warned us of this "common" byproduct of brain surgery. They did admit that, for the uninitiated, gran mal seizures are frightful to watch. And, after the first one, we were told how to behave in the event of another. But, we never got advise on how long to expect them, whether to make sure someone was at home with her while the danger of reoccurrance existed. It's as though they felt that, #1. if they told us about the possibility up front we may have decided against the procedure, and #2. once it had happened, sweep it under the rug and it won't happen again! Get a clue, BNI...patient education empowers your customers to make informed decisions and can help alleviate a lot of fear and distrust.

I only want to remember our experience with that great place as a good one. They have saved Mom's life, at the least given her a chance to be the same person she was before. It is truly a like a miracle. But, if they want to act as though brain surgery is as common as tooth extraction, they need to be sure their clients are apprised of all possibilities, and how to deal with them. Especially if it's common to send a patient home after only three days of recovery.

Just like Lamaze for childbirth, and the pamphlets my kids got from the orthodontist, knowledge is power! The more you know the more it won't hurt so much. That's my rant. I feel better now.