A Chance for Shawna, Chapter 5

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FINDING CLOSURE
It was 1986, about 10 years after Shawna’s first seizure, seven years after her surgery, that I suspected Rasmussen’s Encephalitis, an extremely rare disorder I had read about in a medical encyclopedia somewhere. But I couldn’t get any of her doctors to actually say that’s what it was, not even the surgeon who operated on her. Everyone wanted to call it “focal epilepsy of unknown origin”. This frustrated me, because I needed to call it something. I needed to give some kind of definition to what had happened to my daughter.

I became convinced that doctors didn’t want to give us a “rare” diagnosis like Rasmussen’s, because it would make them appear unconventional to their peers. If it didn’t fit an established diagnosis, it was safer to just say “unknown” than to label it a rare disease. This quagmire left us in limbo for the next 25 years. Granted, I quit searching for a diagnosis after a while, and we all went on with our lives. Then, during a routine checkup in early 2000, a young neurologist at the University of San Diego said to me, “You know she’s classic Rasmussen’s, don’t you?”. I replied, “Yeah, I know. You’re just the first doctor willing to say it.”

A SHIP IN THE NIGHT
I periodically searched the Internet for info on Rasmussen’s Encephalitis, but found really very little, until one day in July of 2008. I can’t explain why it took me this long to find something substantial, as I realize the Yahoo group and other sites were out there long before that, I just didn’t happen to find them. Again, after a while I just didn’t look very hard. I had been living with this for nearly 30 years. I had really put it to rest so to speak. But that day in July 2008, when I discovered news reports about little Jessie Hall and the newly formed Hemispherectomy Foundation, Shawna’s and my world changed forever.

I had always thought we had done everything possible for Shawna. We tweaked medication periodically over the years, and had her on the maximum dosage of four different meds. We tried the vegus nerve stimulator (VNS), to no avail. The frequency of seizures did not change – one or two a day, sometimes more, sometimes less. Gradually, I stopped reporting seizures to the doctor, as every increase or change in meds was hard on her and on us.

But once I found the Hemispherectomy Foundation and the Yahoo health group rs_hemispherectomy, I gradually realized there might be something more we could do.

A SECOND SURGERY?
If during the past 30 years someone would have told me I’d be considering a second surgery for Shawna I would have called them crazy. But that’s exactly what happened in the fall of 2008. After reading the posts from other parents about “re-do” surgeries, I talked with Shawna about it, and with her permission I informed her neurologist at University of California at Davis (Sacramento) that I had been under-reporting seizures and that I wanted him to arrange the testing for a possible re-do.

After all the tests, I got the call in early May, 2009 that the U.C. Davis case conference team had deemed there was a “significant chance” that Shawna could be seizure free with a second surgery, with no further loss of function. No promises, but all the tests had indicated that all of her seizures were coming from what remained of her diseased left hemisphere, the part that was not removed in 1979.

I was surprised to discover that deciding to do a second surgery was a lot harder than deciding to do the first. The first time there was no choice. At a hundred seizures a day she had no quality of life. But now she was an active adult, living in her own apartment. She had a ton of friends and had made a life for herself. The thought of jeopardizing any of that was unthinkable.

We met the doctor who would be doing the surgery, Dr. Edie Zusman, director of adult neurosurgery at Sutter Memorial in Sacramento. She had done her neurosurgical residency at U.C. Davis and occasionally loaned herself out to them. She was young and pretty, which was a bit unnerving. But I soon realized how knowledgeable she was and what a great fit she was for Shawna. She took the time to get to know Shawna’s personality and the essence of Shawna. She understood my fear of losing any part of who, or what, Shawna was to another surgery. She explained that she would have Dr. Samuel Ciricillo, the director of pediatric neurosurgery at Sutter, assist her with Shawna’s surgery. Even though Shawna was 35 years old, Dr. Ciricillo performed hemispherectomies much more often than she did, as this procedure is most often done on children, of course.

One of the things I asked Dr. Zusman was. . why didn’t they do a complete hemispherectomy on Shawna in the first place back in ’79 at St. Louis Children’s Hospital? If they had, things might have turned out very different for her. Dr. Zusman explained that Shawna had one of the most preeminent pediatric neurosurgeons of the time, Dr. Sydney Goldring. He was a true pioneer in seizure surgery. But back in the 70’s they did not have the technology to prevent massive blood loss in a small child like they do today, so that is why they could not perform a complete hemispherectomy. So here we were.

Shawna wanted to go for it. No fear, no hesitation. For the next three months while I pondered the scary possibilities, Shawna kept working on me, urging me to say yes. Finally, in mid-September, 2009 we set the date – November 16.


TO BE CONTINUED