By Jeb Rodgers, MD, Resident Physician, University of Missouri Department of Emergency Medicine (left); Niraj Arora, MD, Assistant Professor of Clinical Neurology, University of Missouri Department of Neurology (center); and Section Editor Michael Reznik, MD, Assistant Professor of Neurology & Neurosurgery, Brown University, Alpert Medical School/Rhode Island Hospital (right).
Steve Maddox is a man with many titles—devoted father, loving husband, dedicated driveway basketball player, motorcycle-rider, lover of jokes and wisecracks, shop foreman at the local Ford auto-body shop. Now, after a fateful day last August, he’s earned himself one more: bona fide stroke survivor.
A Ride into the Unknown
It was a regular work day for Steve, when all of a sudden he felt the onset of a pounding headache. The way he remembers it, there wasn’t anything out of the ordinary about the headache itself, but his coworkers became alarmed when he began slurring his words and had difficulty keeping his balance. They quickly recognized that his symptoms were potential signs of a stroke and immediately called for an ambulance. Steve’s wife Marcy remembers getting a phone call from Steve’s phone that day, and she knew something was wrong as soon as she recognized the voice on the other line as belonging to Steve’s boss. He was calling to give her the bad news. Steve had been rushed to the University of Missouri Hospital, where the awaiting stroke team quickly discovered that his left arm and leg were completely paralyzed.
An initial CT scan revealed an area of bleeding in a part of the right side of Steve’s brain called the parietal lobe. Worse, pressure from the bleeding was causing the right side of his brain to shift across and compress the left side of his brain, while also causing an obstruction of his ventricles—the brain’s reservoirs and conduits of cerebrospinal fluid. This was a life-threatening situation, and as Steve quickly began to lose consciousness and began having difficulty breathing on his own, a breathing tube was placed and he was put on a mechanical ventilator to help him breathe. Soon after, a neurosurgeon placed an external ventricular drain (EVD) to monitor the pressure in Steve’s brain and to help drain the obstructed cerebrospinal fluid, and he was admitted to the Neuroscience-ICU (NSICU) where he would receive care while he was critically ill. “One of the doctors had a tough conversation with me [then],” Marcy says as she recalls that fateful evening. “Steve would get worse before he gets better ... [and I realized] the unknown is excruciating.”
A Unicorn on a Roller Coaster
The next day was indeed worse, as Steve developed a cardinal sign suggestive of dangerously high pressure in the brain—an asymmetric dilated pupil that did not constrict when exposed to light. The NSICU team’s suspicion was confirmed after a repeat CT scan showed that Steve’s brain was beginning to swell even more severely, just like a smashed thumb struck by a hammer. This was causing his temporal lobe to herniate—in other words, parts of Steve’s brain were getting squeezed downward against other important brain structures and putting his life and brain function at risk. The only real option to prevent this from happening, and in turn to save Steve’s life, was an urgent surgery that involved removing a portion of the skull to allow the brain to swell without crushing itself.
The decision was not straightforward, because even though the surgery might be life-saving, it would not help improve the disabilities Steve was likely to have in the future. Marcy struggled with the decision to go for the surgery in the few minutes she had to decide. She recorded the dilemma in her journal: “I can't lose you, but I also know there is a certain quality of life you would expect.”
The entire NSICU team wrestled with the same internal struggle, wanting to do more in the face of the dismal scenario, but also realizing that aggressive life-prolonging measures aren't always the right answer for everyone. Ultimately, Marcy gave the OK to proceed with decompressive surgery, but her mind was not at ease.
With the decision having been made to proceed, the medical team had no time to waste. Dr. Endrit Ziu, the neurosurgery fellow working in the NSICU that day, called the operating room to start preparing, while the NSICU nurses began the thankless job of untethering all the cables, monitors, ventilator equipment, IVs and drips that were all necessary parts of Steve’s care. Once in the operating room, Dr. Ziu and his team used a drill to remove a piece of bone from the right side of Steve’s skull, then opened the thick canvas-like covering of the brain called the dura, which was bulging with pressure. Finally, they carefully removed the hematoma from deep within Steve’s brain, with the hopes that doing so might reduce the amount of pressure it was exerting on other brain structures.
Marcy was adjusting to the new normal of constant crisis, but was hoping the surgery Steve received would stem the tide. But the tide kept coming; in the early morning hours the next day, Marcy received a phone call from the resident who was on call in the NSICU. He had alarming news, informing her that Steve’s intracranial pressure had risen well above the upper safe limit, and that the NSICU team might have to put him in a medically-induced coma using powerful sedatives. Marcy gave the go-ahead, but was surprised when she arrived in the morning and learned that his pressures had normalized with several doses of mannitol, a drug that can transiently reduce swelling in the brain, and that Steve had been spared the deep sedation. “The ups and downs are terrifying,” Marcy wrote in her journal, “[but] I am ready to celebrate a victory.”
Unfortunately, though, the elevated intracranial pressures remained an ongoing issue, and the NSICU team did ultimately need to administer a powerful barbiturate sedative to reduce Steve’s cerebral metabolism and thereby prevent the swelling in his brain from getting any worse. Steve would be in a medically-induced coma for the next four days, completely still except for his chest rising and falling with the ventilator.
Despite these setbacks early on, Marcy maintained her sense of humor and tried to stay positive. After a second intracranial pressure monitor was placed, she wrote the following in her journal: “They call it the unicorn because they have to wrap the sensor and it looks like a unicorn horn. I took a picture … I don't think [Steve] would believe me if I didn’t.”
Finding Hope Without a Manual
Slowly the tides began to turn in Steve’s favor. He remained on the ventilator but had progressively fewer spikes of his intracranial pressure. By day 11 the pressure in his head had normalized and the invasive intracranial monitors were removed. “You did so well today,” Marcy noted in her journal. “I am so afraid to put that out in the universe because I can’t deal with another heartbreak. I feel raw and numb.”
As the sedation was titrated off, Steve started to open his eyes and move his arms when pinched. But as the days went by, he was still dependent on the ventilator to help him breathe, so he underwent a tracheostomy to allow him the chance to recover with a longer-term breathing tube. It was also with the expectation that, despite Steve’s improvements, the recovery from such a major stroke occurs at a frustratingly slow pace. “I would normally be waiting for you to come home for dinner,” Marcy wrote in her journal, “but now I am not even sure if you will ever come home.”
Eventually, though, Steve did awaken from his long slumber. With his giant build, he was like a hibernating bear awakening at the end of winter. In her journal, Marcy noted his progress: “Right arm spontaneous movements, left eye opening, forehead wrinkles, left shoulder movement, possible squeeze of right hand, yawns, swallows.” As the days went on, Steve had recovered enough that he did not need the NSICU, and though Marcy was happy about his improvement, she was nervous about the eventual transition to a long-term acute care facility (LTAC).
Indeed, after several days on the general hospital floor, Steve was transferred to an LTAC. When he first arrived there, Marcy noticed that all the staff were acting strangely, pausing at his door to stare and ponder. She eventually asked why everyone was staring and was told that Steve looked remarkably like another stroke patient they had just discharged. (In a strange twist of fate, Marcy and Steve later met that fellow stroke survivor and his wife.) Despite the change in surroundings and his care team Steve continued to improve, and was eventually able to breathe on his own off the ventilator and sit at the edge of the bed for longer periods of time. His communication skills began recovering as well, and he was quick to make use of a white board to communicate and make his needs known: one of the first messages he scribbled was “I need to pee.”
As Steve became more aware and interactive it also became evident that he suffered from left-sided neglect, a disability causing difficulty perceiving things on the left side of one’s body and field of vision. The neglect was a major obstacle in his recovery and is something he continues to battle to this day. To overcome it, Steve has learned to consciously pay attention to his left side through strategies learned during his rehabilitation. “I have learned to look things over really well and not just settle for what I think I see,” he says.
The recovery process was a bumpy one, and there were a few setbacks at the LTAC. The task of finding a comfortable position with a weak arm and leg was a constant struggle for Steve. This came to a head one night when he was having particular difficulty adjusting himself and accidentally pulled his tracheostomy tube out of his neck. (Luckily, it was able to be replaced and a potential crisis was averted.) Marcy continued to function as Steve’s bedrock as she helped navigate the ever-changing situation. “I want to do what's best for you ... [but] there really isn't a manual for this,” she wrote in her journal.
Despite the setbacks, Steve continued to amaze everyone with his determination and progress. Marcy summarized his progress in an email to their old NSICU team: “We finally got his days and nights straightened out, which is great. Last week we added the speaking valve to his tracheostomy and he told me he loved me for the first time in 28 days. He had a swallow study on Monday and started eating real food yesterday. He is super strong on his right side, but really still not a lot of response on his left side. We have seen him move his left leg and arm some, but not purposefully. He asked yesterday to record a video for his supporters on Facebook. Then he asked to record a second one…because he thinks he’s funny.”
The Next Leg of the Marathon
The next step of Steve’s marathon was at an inpatient rehabilitation facility, where the hard physical work got even more intensive. For much of his time there, he kept thinking how desperately he wanted to walk and hoping he could make it happen. He made many breakthroughs along the way: speaking, reading, regaining his ability to build and construct things. But the most meaningful of all was ultimately regaining the ability to walk. Because Steve is built like an offensive lineman at well over six feet tall, his physical therapy team first made him prove he could stand up for two minutes on his own; if he fell, they knew it would be with the force of a large tree. When he reached that milestone, he quickly got to working on an auto-ambulator—a type of treadmill for patients learning to walk again that clamps onto a patient’s legs and moves them, theoretically stimulating the regenerating nervous system in the process. The NSICU team that had taken care of Steve was thrilled to get a short video clip of him walking with one of these devices, and all his fans enjoyed watching his update videos throughout his recovery.
Even after returning home from the rehabilitation facility, the marathon of stroke recovery continues. Steve is still working on his goal of graduating from the quad-pod cane he currently uses and ditching it for good. In the meantime, he has posted a video on Facebook detailing his progress. “Hello Facebook followers … six months since we began this journey, here I am … I'm still standing. I hope next time you see me I'm riding my motorcycle!” In the video he is slowly taking steps, and transitions from the smooth hallway surface to the carpeted living room, which he explains is quite a challenge. “It always takes me a minute to transfer to the carpet,” he says.
One Wednesday this past March Steve walked into the University of Missouri NSICU with a smile on his face, accompanied by his wife Marcy. The visit was an important opportunity for Steve to finally meet many of the staff that cared for him during his sickest days, and to help fill in a large gap in his memory. Meanwhile, Marcy hoped to express her gratitude for taking care of Steve and supporting her and their family. Their return visit to the NSICU was a collective victory not just for Steve, but for all the doctors, nurses and therapists who helped him get back to his normal life.
Neuro ICU team with Steve and Marcy at return visit
Though a host of expert clinicians and cutting-edge medical technology helped save Steve’s life, the biggest driver in his impressive recovery has been his own grit, determination and hard work. Today he continues to run his own kind of marathon, with every step serving to strengthen his brain, muscles and all the neural pathways in between. And just as every runner needs a coach, so too does Steve, whose devoted wife Marcy continues to encourage and guide him. Marcy recalls her initial journal entry from the ordeal: “It’s hard not having my best friend to help me through this. Don’t worry—there are an amazing cast of characters lifting me up. One day, I hope you and I can read this together and celebrate your full recovery.”
With their combined forces, there is little doubt that their future will indeed be one worth celebrating.
Image on left: Steve with his family post-stroke.