Dustin had to do pretty extensive pre-operative (pre-op) testing before his scheduled awake craniotomy. He had the continuous EEG to monitor and record seizure activity. This allows the docs to adjust his anticonvulsant medications. Ideally, he would be going into the surgery seizure free as that is the safest.
The other important testing prior to going into the operating room was getting a fMRI which stands for functional MRI. CT scans helpful to give us information quickly since the scans themselves only take a few minutes to complete. MRI can provide a much more nuanced view of the internal components of our bodies but take a lot longer and depends on what you’re scanning. For example, a MRI of the brain with and without contrast takes around 45 minutes to complete. If you’re scanning the brain and spinal cord that can be 2 hours long. Remember, to get the best imaging you can’t move otherwise the imaging is very noisy and difficult to interpret. However, fMRI is a totally different beast.
It’s important to remember that we have a rough idea of what areas of the brain are typically responsible for specific functions. However, there can be significant variation from person to person. Some people are left brain dominant while others are right brain dominant. Sometimes our brains have larger or smaller areas of language or they could be shifted a little. That’s where the fMRI comes in handy. The fMRI maps out the brain during different functional states, looking at where the brain “lights up” during specific tasks. Depending on where your tumor is, your questions and tasks during the fMRI might look different than someone else’s but the process is the same. It takes roughly 60-90 minutes and you have someone giving you very specific instructions. You might be looking at images and told to think of the name of the object in the photo. You might be asked to solve mental games in your head. The fMRI can detect subtle changes in blood flow and blood oxygenation during this series of tasks to give a more accurate information of what parts of your brain does what. Neurosurgeons can use this imaging while in the OR as a basic road map of where certain things might be to give them a place to start the mapping process once you are in the operating room.
The other testing done is called neuropsych testing. The field of neuropsychology is mostly concerned with the relationship of the brain and behavior which includes functional capacity. Through specialized evaluations, a neuropsychologist can evaluate changes in behavior and functionality due to a disease or injury to the brain. This type of testing is done for several medical conditions that affect the brain such as brain ADHD, autism, traumatic brain injury, concussions, motor neuron diseases, etc. It is helpful for assessing disease progression and can be helpful in identifying potential remediations or adaptations that may help improve the patient’s quality of life.
With brain cancer, you would ideally have your first neuropsych assessment done shortly after diagnosis if at all possible. Neuropsych assessments evaluate how your brain functions which indirectly gives you a ton of information about both the structural and functional integrity of your brain. Our brains are quite nuanced and plastic, meaning that several areas of the brain can do the same tasks if or help out when a particular region of the brain is injured or diseased. Think of it as a computer backup or spare part – it is a back up area or spare part of the brain can take over if one area begins to fail. Sometimes these backups or spare parts aren’t are good as or as efficient as the original, but it gets the job done.
The purpose of the initial assessment is two fold. First, it gives clinicians and idea of how your tumor is affecting your brain functions currently. Depending on where your tumor is, you might expect to see it impacting your speech, your motor function, your ability to understand spoken language, your ability to focus, your ability to complete complex tasks, your personality, or even your emotional reactions and capabilities. Second, it serves as a baseline which future assessments can be compared to. This allows clinicians to understand how the tumor affects you currently, if/how treatment has impacted your function (improved or worsened), and gives some insight into how progression impacts your function.
A neuropsych evaluation is quite lengthy and complex and generally take anywhere from 3-5 hours but can be as long as 8 hours depending on the patient. Fatigue and mental acuity can impact how long these evaluations take. But most people who have gone through them find them to be a bit of a mental slog.
To be honest, I have no clue how they got anything out of these tests on Dustin the first time around. Dustin was constantly sleeping, had no patience or desire to follow directions or take a test, and his brain was constantly short circuiting. He took great joy in being a pain in the ass during this time. He would use technically accurate but not commonly used words just to show off his brilliance and annoy others for wasting his time. For example, eye glasses were spectacles. Nobody living in non-victorian times or under a 100 years old or uses the word spectacles for glasses. A pen would be a writing utensil. Sometimes he would be oddly specific. For example, when asked to identify a cell phone he would that is a device called an Apple iPhone, or mobile telephone, or smart telephone. Not to be confused with a rotary phone or touch tone phone or landline.
Dustin and I often talked about his first experience with pre-op testing. He said that thinks he slept through the fMRI which honestly wouldn’t surprise me. He also wondered if they would have been able to get more if he were more cooperative during his testing. But honestly, that’s exactly who Dustin is at baseline – a snarky, grouchy, pain in the ass who enjoys being mischievous. Spoiler alert, they left that snarky, grouchy, mischievous, pain in the ass Dustin Totally. Intact…Twice. Part of me is super grateful because I love that part of him, especially when it’s not directed at me. But the annoyed wife in me was like, “c’mon! You could have taken him from a level 13 pain in the ass to an 11 and I wouldn’t have complained.” Sigh.
Beside you in time 