October 2, 2013

Confusion surrounded the setting of the October 2, appointment with Dr. Fried, the neurosurgeon who will be placing the depth electrodes in Gabriela’s brain.  Originally the appointment was set for October 2, at noon.  Then a few weeks later we received an email stating that since no time had been set for the appointment would 11:30 work … then the automated call confirmed the appointment for 11:00.

After receiving three different times Gabriela sent an email to the young lady in charge of scheduling explaining that she had received a variety of appointment times but that we would arrive at 10:30 just in case the time was to change again.

The whole appointment was feeling very disorganized which was uncomfortable for me … I’ve always pictured neurosurgeons as meticulous, detailed, OCDish.  Just the event of setting the appointment and being told originally by Dr. Fried’s scheduler that we would meet the doctor at the end of September and that the surgery would then be set for October hadn’t happened.

But we also knew that Dr. Fried was excellent because we knew that Dr. Stern would tolerate nothing less for his patients.

Gabriela and I had decided that her new independent living case manager should be included in the appointment to discuss any issues related to Gabriela’s care after the procedure.

The three of us were escorted into the exam room by a nurse and her young trainee. After a few minutes of introductions and conversation regarding the nurse’s South African accent, Dr. Fried joined us.

He introduced himself in a thick Israeli accent, smiled and proceeded to explain to Gabriela that because of the lack of conclusive test results in phase 1, the team had decided that she was a good candidate for phase 2, or depth electrodes.

He explained that even after completing this phase there was a possibility that there may still not be enough information gathered to do surgery or that she would not advance to surgery at all.  But that there was a more involved procedure requiring removal of a part of the skull and putting a mesh of closely placed electrodes directly on the brain. If that gathered enough information then the patient would go directly into surgery. However, if the depth electrodes produced the needed information she would be allow two to three months of recovery before the resection surgery would be scheduled.

The surgery was not without its risks he cautioned. There is always a possibility no matter how minor, of an infection in the brain.

“Do you wish to continue?” He asked.

Without hesitation Gabriela answered, “Yes.”

Dr. Fried explained that first Gabriela would have an MRI to identify the location of all veins in her brain and alter any planned paths for the electrodes to avoid these areas. Then she would have a metal rim screwed into her skull to help guide the electrodes into place.  He would drill six holes about 2 cm in diameter on each side of her head.  Then the electrodes would be inserted and Gabriela would spend 24 hours in ICU before they transferred her onto the epilepsy monitoring unit (EMU) where they would again induce seizures. When they had collected enough data the electrodes would be surgically removed and she would spend another 24 hours in ICU before going home.

As a precaution Gabriela needed to be in good health and have a dental checkup to make sure there were no cavities. All of these were to minimize the risk of infection.

Then Dr. Fried referred to Gabriela’s file … “Oh, you have damage to both sides of your brain.” “Oh, they feel the origin is on the right … but you have damage to both sides.” (I’m not sure how necessary it was to repeat to Gabriela that she has brain damage, non-the-less it was all so clinical to the doctor).

Then he asked if there was any history of psychological issues … and Gabriela chuckled and I just said, “Oh ya.”

Dr. Fried stopped what he was doing and was fully focused wanting more details.  I started to explain, telling him that for nearly two years Gabriela had suffered multiple psychotic breaks and was institutionalized for a long period and that Dr. Stern had more details and all the authorizations needed to speak with any behavioral folks in regard to Gabriela.

Dr. Fried left little to be questioned … we asked if he had any specific aftercare instructions.

“No, a few days to a week take it easy.” He said with a warm smile.

“And is there any instruction for care after the resection surgery?” I asked.

“No,” He swayed his head from side to side, “Maybe for one week have someone stop by to check on her.” He was so matter-of-fact.

After a quick exchange between Dr. Fried and the nurse, they agreed that surgery would probably be in January sometime. He smiled and nodded to each of us and was out the door.

After Dr. Fried left the room I calmly asked the nurse about the recovery instructions … “One week of aftercare wouldn’t have worked out for Sandy and Neil.” I knew our nurse knew these people well because Neil had mentioned her frequently.

Sandy had just finished a resection surgery at the end July and had been doing well for the first two months. Then suddenly one night she had several seizures, one after another. Her husband Neil who I knew through a caregivers support group that was started by UCLA, called 911, Sandy was taken to a hospital, where they stopped her seizures but she had a postictal psychotic event that lasted several days and was very hard on both of them.

I knew the nurse wasn’t going to respond because of HIPPA restrictions but I wanted her to know I wasn’t happy about the quick careless response from Dr. Fried regarding aftercare. Then it occurred to me that Dr. Fried had responded only to the recovery time from surgery and not to the recovery time as it related to the seizures.

January wasn’t that far away … Gabriela was glad to be moving closer to her surgery.

On the other hand, I’m more than just a little frightened despite knowing that some 70% of the people that have undergone this surgery live a seizure free life and that 25% have vastly reduced seizure activity. It’s that small 5% that bothers me.

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  • roni

    We fear what we don’t know. And even if it’s only 5%, that’s enough Fear for anyone. Think about the positive 70% and a life fee of seizures. It’s hard. But, just breathe it in and out, over and over. Over and over…