Updated: Nov 1, 2021
You hear them. The distant footsteps growing louder as they approach down the hallway. It doesn’t sound like the nurse this time. You hold your breath, and wait, and then...there it is, that familiar knock on the door. You wipe your sweaty palms on your lap and swallow hard. “Come in”, you whisper. It’s him. You know – HIM him. The dude that helped save your life. The one who stood over your operating room table...over your intensive care bed...and now is standing in front of you. A rush of different emotions and thoughts start racing through your heart and head: gratitude, fondness, anxiety, bad memories, good memories, it’s great to see him, I don’t want to see him, what should I say, how will this go, get me out of here! Yep, it’s your first follow-up, outpatient, neurosurgical office visit since being discharged from the hospital. Chances are, the loved one sitting next to you is having their own interior meltdown.
“Hello! You look great!,” he says. “GREAT?!?” you think. “I’m a train wreck!” Well, I guess compared to what we looked like in the ICU (you know, the frizzed-out hair, hospital gown, drain hanging from our head, bruised and swollen face from the craniotomy) we look like runway models. The problem is, most of the time, psychological health (or lack thereof) can’t be detected from the outside. The other problem is, how do you describe this to others, especially to your doctor? It’s usually not too difficult to list physical symptoms: headaches, dizziness, insomnia, fatigue. But how do you tell your doctor, or even your loved ones, that you aren’t the same somehow? That you aren’t...”you.” You search for words to explain how you’re feeling. Am I sad, nervous, hyper, unmotivated, uninterested? Do I not care about life anymore? Am I always on the verge of tears? Am I mad? Do I feel ungrateful and don’t know why? Are my loved ones getting on my nerves? Am I having strange thoughts? Am I hearing or seeing things that I’m pretty sure others can’t? Do reminders of my stroke send a surge of panic through me? Do I feel kind of confused, like I’m in a mental fog? Am I forgetting things or having trouble thinking things through? “I may look okay, but something is definitely different and wrong”, you may think. Or it may not be you who is noticing the changes. Perhaps your loved ones have mentioned that your personality isn’t the same, or that your behavior is concerning them. What can all this mean?
How do you tell your doctor, or even your loved ones, that you aren’t the same somehow? That you aren’t...”you.”
In order to answer that question, we have to first consider what a stroke is. A stroke (also aptly referred to as a “Cerebral Vascular Accident” or a CVA) occurs when something goes wrong in the blood vessels or arteries of the brain. They either become blocked (Obstructive/Ischemic Stroke) or they bleed (Hemorrhagic Stroke) which can lead to damage or death to brain tissue. The after-effects of a stroke depends on many variables including: what brain region is involved, the severity of the obstruction or bleed, if any subsequent strokes occur, and whether other health issues exist. These and other variables will determine the presence and degree of residual impairment – physical, cognitive, or psychological – which can range from none to severe.
When a stroke survivor experiences changes emotionally, behaviorally, or cognitively they may be referred to a specialty-trained psychologist such as a Rehabilitation, Health, or Neuropsychologist. These psychologists can be extremely helpful in assessing, diagnosing, and treating these types of alterations in a person’s functioning.
The first thing that happens at a neuropsychology exam is that the psychologist will chat with the patient (and probably also their loved ones) about how the patient used to feel and function, and how that has changed. Next, a variety of (non-invasive) tests will be administered whereby the neuropsychologist will ask the person to verbally answer questions, manipulate objects with their hands, or write their responses down on paper. The areas they are looking into include the person’s orientation, attention/concentration, memory, language skills, visuospatial and sensorimotor abilities, as well as reasoning/judgment/problem-solving. They will also likely have the patient complete inventories to get a better understanding of their personality, behavior, and how they are feeling emotionally.
Equipped with this information, the neuropsychologist can ascertain whether there has been a change in the patient’s level of functioning since the stroke, and if so, to what degree. This, in turn, will allow the neuropsychologist to make a diagnosis. Some diagnoses or post-stroke changes are a direct physiological consequence from damage to the brain, whereas others are a result of the survivor’s efforts to cope with the stroke. Sometimes a psychologist will also be asked to assess whether an individual can make their own decisions. In a court/legal setting, this is called “Competency.” In a clinical setting, this is known as “Decisional Capacity.”
The treatment an individual will receive following a stroke will obviously depend on what type of residuals or deficits resulted from it. Just as some survivors may need medication for the physical sequelae of stroke, some may need medication to help with mood or other psychological issues. But the most typical role a psychologist will play in the treatment phase, would be to offer psychotherapy.
The psychologist can assist the survivor and/or loved ones with issues as varied as: adjustment to deficits and lifestyle changes wrought by the stroke; behavioral problems stemming from brain damage (e.g. if the survivor is acting out inappropriately); communication/relationship problems between the survivor and loved ones; problems on the job; developing strategies to compensate for deficits; mood disturbances such as depression, anxiety, panic attacks, obsessive-compulsive symptoms, and PTSD; as well as normal grief reactions.
What is the take-home message here? Find someone you trust to confide in. Don’t suffer in silence.
A psychologist may also work alongside other healthcare disciplines in a cognitive rehabilitation program. These types of structured programs are designed to help a patient relearn old behaviors or develop new strategies to compensate for functions they have lost.
Okay, so with all that being said, what is the take-home message here? Find someone you trust to confide in. Don’t suffer in silence. Educate yourself about the stroke. Usually, the more someone learns, the more empowered they feel. And remember, the difficulties a survivor experiences in the immediate aftermath of a stroke will not necessarily linger. Many problems can and do get better with time and appropriate intervention. So when that neurosurgeon walks through the door and says, “Hello! You look great!”, perhaps respond by saying something such as, “Oh, thank you, but actually I’m not feeling so great. It’s hard for me to explain, but I’m going to try...”. Psychological symptoms following a life-threatening ordeal such as a stroke are not uncommon. You are not in this alone. There are people out there able and willing to help. Take care of yourself. You are important.And so is your life – a life that has been spared! Seek out the support you need to live that life to the fullest.
Dr. Nicole Best (“Nikki”) is a Clinical Psychologist and 3-time ruptured brain aneurysm survivor. She earned her Doctorate in Psychology (PsyD) from Wright State University School of Professional Psychology, and completed a Post-Doctoral Fellowship at The Ohio State University Medical Center, Dept. of Physical Medicine & Rehabilitation, Division of Rehabilitation Psychology. Thereafter, she worked for almost 14 years in the VA Healthcare System before leaving on disability after her 3rd subarachnoid hemorrhage. She has extensive experience performing psychotherapy and neuropsychological and decisional capacity evaluations with patients suffering from a wide range of medical conditions, including dementia, traumatic brain injury, stroke, and terminal illness.