My Girl by Louise Harris
This is my second attempt at writing an entry for Sarah’s blog, at her request. The first time took a couple of hours of deep reflection and thought, only to be erased in a nanosecond by the delete button, in error! So here is round two.
It is now five months since Sarah had the Neuropace implant and ten months since the laser ablation. She has only had two incidences of seizures, not counting the one on the operating table in July and one more shortly afterwards, in the hospital. We are all elated by the results, but the person who counts the most, is feeling the best of us all. We have seen Sarah regain confidence, motivation to get up and do things, and a significant reduction in her anxiety.
I know that Sarah has covered this in her blog, but there have been some less than favorable side effects of the surgeries. Firstly, in October/November 2018, when she had the intracranial monitoring, it took a while before Sarah had the desired seizures they needed to see for the brain mapping. They had to lower her anti-seizure meds dramatically before she started to have seizures and then she had so many that it was difficult for her to wake up and when she did, to speak correctly. I was terribly alarmed but did not get the sense that the doctors were. They just kept saying she had had a lot of seizures and it would take time for her to get all of her functions back. Because of the ever present threat of infection in a hospital, the docs did not want to keep the probes in her head any longer than needed and tried for three days to get reliable results for some neuropsych testing they wanted done before the laser ablation process a couple of months later. Brain mapping is just what it sounds like. By noting a patient’s responses to questions, and with the deep brain probes implanted, they can tell where certain functions are in one’s brain. Because of the brain scrambling from the multiple seizures, Sarah could not answer correctly and consistently simple questions or complete sentences such as “The grass is green, the sky is ___.” After trying repeatedly, the team decided to use the testing she had done ten years prior, as apparently the brain functions do not really move around over the years.
After we left the hospital that time, I cannot remember how long it took for her speaking to return to normal, but it did. Sarah continued to have seizures after that surgery, and at least one emergency room visit when we could not stop the seizures with her home emergency meds. To back up a bit, we had been observing 20+ seizures per month, and Sarah’s memory was worsening dramatically. When the doctors did the memory testing at office visits, it would be a good day if she remembered one of the three items she was told to remember from the beginning to the end of the visit. At home, Sarah had stopped using Uber to go to the store or to do some of the fun things she had been doing and her worries about her memory were increasing. After a particularly bad bout of seizures and hospital stays, we decided to take a shot at asking her trusted and knowledgeable (as in top of the field) neurosurgeon if there were any new methods of surgical interventions and he asked her to come up for a visit. And so the new round of surgeries began.
We have spent much time at Yale-New Haven Hospital over the past two decades, for Sarah’s care and that of her father, who passed away there in 2010, from leukemia. We know the floor plan, many of the staff, and truly love many of her caregivers there, so we have a funny sort of feeling of “homecoming” when we are there. We also have a family connection as both my father and his brothers went to undergraduate and medical school there and my niece went as an undergrad. We have developed strong friendships with many of the people there whom we see and talk to on a regular basis, aside from medical necessity. I am telling you this so that you understand our level of comfort at Yale. We trust their individual and collective intelligence and experience. Their passion for the science of the field and their compassion for the patients are palpable.
So when Sarah’s doctors recommend a treatment option, we know that it has been heavily weighed against risks of not doing something, or alternatives.
Having said that, however, we went into laser ablation thinking the worst that would happen was that Sarah might lose some of her depth perception. Of course, there was a possibility of stroke or death, but we chalked that up to being something they have to say to patients on their permission forms.
It turned out that the laser ablation surgery was over 12 hours long. We later learned that the computer had trouble recognizing Sarah’s face and shape when she was on the operating table so they had to do more measuring and redoing of MRI’s in between positioning the laser. They learned from that surgery with Sarah that they should put in markers (screws, basically) for all ablation patients that the computer can recognize during the surgery.
By all accounts, the surgery was a success in that there was no bleeding in the cranial cavity and her body was stable. After she woke up though, we noticed that she could not say most people’s names including that of her long-term boyfriend. After she began eating, I noticed that she was dropping things that she picked up with her left hand (she is a lefty). The team did further evaluations and determined that there was a heretofore unknown connection between the spots that were lasered and her area(s) of speech. (Note: Sarah has cortical dysplasia so her brain does not follow the usual patterns of speech, art, math etc. that you hear so often.)
This is the part where, as her mom, I started thinking, “What the hell have we done?” Sarah trusts me, her doctors, and in the past, her surgeon grandfather and great uncle to guide her in this process. We had all agreed that this was the best option if she wanted fewer seizures or the possibility of a seizure-free life. Now she had trouble talking, walking, and holding things. If there was ever a time to use the phrase “I was beside myself”, this was it. On the recommendation of a good friend, we bought a deck of cards that had the letters of the alphabet with pictures on it. The first time we tried to go through the deck, Sarah could get two of the 52 correct. It took about ten days to get her into a speech, physical and occupational therapy program. When I was talking to one of the rehabilitation hospitals after trying to reach someone for days, I burst into tears. I kept thinking that if we didn’t begin intervention immediately, we were losing irretrievable ground.
As predicted by her doctors who have seen more of this than I have, obviously, Sarah did regain ground, quickly. Her stability and strength improved enough to stop physical and occupational therapy after a couple of months, but the speech therapy continued into the early fall and we are about to start it back up because Sarah has plateaued and wants to get past this point. When she is tired, or late in any day, word retrieval is more difficult and she wants it to be better.
In May, Sarah had her first cluster of seizures after the laser ablation. The seizures were identical to her pre-ablation seizures which made the medical team suggest that she should get the RNS, aka Neuropace, implanted sooner than later which is why that surgery took place in July. The Neuropace has two permanent leads in her brain with a little computer on the end that sits flush with her skull. You cannot see it from the outside. During the surgery, Sarah had seizure activity while on the operating table and one more that we didn’t even see while she was in ICU. At a follow-up visit in September, the neurologist showed us how quiet Sarah’s brain had been ever since that time. I had never seen her brain waves so even and quiet. It was shocking. The neurologist said that we cannot turn on the Neuropace yet, because there are no seizures for the computer to learn from and subsequently, be programmed to stop. Since that time, Sarah has had a couple of things that looked like they may have been seizures but were not, per the RNS. Yesterday, however, Sarah had two seizures because she was distracted and forgot to take her morning meds. I am happy to report that today we think she is back to her quieter brain state.
The good news, of course, is that overall the seizures are few and far between. The toll that seizures take on her brain is even more evident by the absence of them. Sarah has begun to cook again, and she is always looking for another recipe or way to make something for Chris, who has severe allergies, and for herself. She has lost approximately 30 lbs as she is up and around much more than before, and is going to the gym with me once or twice a week. Last month, I looked into Sarah’s eyes and saw more iris than pupil. I cannot tell you how long it has been since I have really seen the blue in her eyes. This alone was enough to make me weep.
Sarah still contends with migraines and vertigo, but we are working with her medical team closer to home to fix that. The most important part of this story is what Sarah told the neuropsychologist, and that is that she would do it all over again. THIS is better than having 20+ seizures a month.
And that makes me happy, and maybe even relaxed.
Thank you to Sarah’s sister, Julia, for being there throughout this entire process. She could tell by the sound of my voice when I needed her to hop on a train and come up to New Haven. Thank you to all of my other family members, new and old, who supported us in a wide variety of ways. Thank you to our very dear friends for your daily encouragement, treats, and visits (you know who you are!). I truly could not have made it through a couple of very hard days without you. We feel as though we are on the brink of a new life for all of us, as when Sarah is well, we are all better. My final thank you are to our medical team, for without you, this would not be.
