When I met with neuropsychology, Megan gave me the Cliff’s notes of their evaluation and diagnosis, as well as a list of modifications for Christopher’s first few weeks home. His AVM had two primary feeding arteries. One of them was his anterior cranial artery (ACA), which is supposed to feed the right frontal lobe. It is therefore their hypothesis, after looking at both his pre- and post-operative scans and scoring the tests they administered that week, that the AVM has altered blood flow to his brain since birth. Megan stressed that because he is so bright and socially well-adjusted, they had to search pretty hard to find the areas where he is weak. The brain swelling he experienced post-op was therefore an extreme exacerbation, in their view, of cognitive deficits Christopher has had his entire life. The right frontal lobe is responsible for executive functions.
“Executive functions (also known as cognitive control and supervisory attentional system) are a set of cognitive processes – including attentional control, inhibitory control, working memory, and cognitive flexibility, as well as reasoning, problem solving, and planning – that are necessary for the cognitive control of behavior: selecting and successfully monitoring behaviors that facilitate the attainment of chosen goals.[1][2][3] Executive functions gradually develop and change across the lifespan of an individual and can be improved at any time over the course of a person's life.[2] Similarly, these cognitive processes can be adversely affected by a variety of events which affect an individual.[2] (Wikipedia)
Most of the symptoms he had during the first week after surgery definitely fit in this definition. What I’ve been calling short-term memory blips, neuroscientists call working memory. The good news is that Christopher scores in the 99th percentile in verbal reasoning skills and in the superior range for nearly all the math and verbal skills they tested. They still haven’t finished the official report, which BP will use to guide his weekly therapy sessions, so I have notes from our meetings, but haven’t seen his actual normed score report. His attentional control scored 9th percentile, which is a mild impairment. I know they also saw significant weakness in impulse control, visuospatial organization, working memory, perseveration, flexibility, and emotional control. Some things, like impulsivity and emotional control, his therapists observed more during his stay at KKI than what showed up on the official evaluation. Megan is cautiously optimistic that Christopher will make a full recovery to his baseline within a year of surgery. And since the frontal lobe is the last part of the brain to develop at 25-28 years old, he has plenty of time to overcome any remaining deficits in order to become a fully functional and social adult. But it does explain why he was the colicky baby to end all colicky babies, has always been prone to easy frustration and nuclear meltdowns, and has always had anxiety attacks. I’m not at all sure I agree that he’s always had attentional control problems, though, or widespread impulsivity. Scott and I do think, as we review the events of the last year, that many of those things came into play as his symptoms progressed and he entered crisis mode. We have already seen an improvement in a few areas in the last couple weeks, which makes us hopeful that the simple removal of the AVM could be tremendously helpful for him once he’s healed from the surgery itself. His behavioral psych appointments will help remediate the rest.
Behavioral psychology is also in play to help give Christopher coping skills for his Chiari pain in the months ahead and to prepare him for the next surgery. He generally doesn’t talk about it, but there were several instances during our stay that he told me, “Brain surgery has been so much harder than I thought it would be, I don’t know if I can do this again.” To be clear, he does actually still want the Chiari surgery, and he’s never said he wouldn’t do it. He was just very, very scared that he’d end up at Kennedy Krieger learning to walk again. So I spoke with Child Life, his BP Rachel, the KKI attending physicians, and his physical therapists about his fears, and they have assured him that the Chiari decompression surgery is a very different, much easier procedure. Not only is it skull base surgery rather than an open craniotomy, and therefore not going anywhere near his motor strip, sensory strip, or frontal lobe, but it technically won’t dissect brain tissue at all. The neck muscles will be moved aside for the procedure, so he is very likely to need outpatient PT to strengthen those muscles and put them back into a normal conformation. He didn’t believe me when I gave this explanation, telling me that since the odds of what has happened this surgery were incredibly unlikely, I don’t know that he couldn’t have an extremely unlikely outcome next time. It’s not an illogical conclusion, so I couldn’t just dismiss it out of hand. But he’s heard it won’t happen from enough of his medical team, that he says he no longer feels anxious. The first surgery is done, he's walking easily again, and he is confident the next surgery won’t be so horrific. He still wants to continue doing his anxiety meditation series, however, just in case his anxiety relief is due to his daily meditations. Smart kid.
Rachel is also planning on using her needle desensitization kit on Christopher to both alleviate his fear of IVs and arterial lines, and also so that he’ll allow us to attempt acupuncture for his Chiari pain. His goal is that we can dial the pain back enough to take his baseline pain from a 5/6 down to a 4/5. Level 8 pain is generally when he curls up into a ball and stops functioning, but the 5/6 he lives with most of the time leaves him an awfully short fuse for handling any daily frustrations that come his way. The behavior psych department at KKI also has a mock MRI she intends to use to help Christopher prepare for his post-op brain scan that’s soon to be scheduled. He has no problems at all with CT scans, which are silent and over in a few minutes. But MRI machines are extremely loud and take 30 minutes (or more) of absolute stillness. Between his first brain scan and his full spinal scan, the stillness is obnoxious but not a deal-breaker. But spending half an hour in a very loud environment he knows will make his headache worse is rather frightening. So. The mock MRI it is.
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