Bindi Parikh, MD, Neurology Resident, University of Minnesota
Christine Yeager, MD, Assistant Professor of Neurology, University of Minnesota
Lauren Koffman, DO, MS
One Thursday, amidst the peak of the COVID-19 pandemic, Naema had been working from home as a student advisor and was carrying out her usual activities. Though she did not feel quite herself, she drove herself to take care of errands and later went outside for a run. She recalls, “I was feeling off, my appetite was off. I didn’t know at the time that I was walking off to the left.” Naema recalls a visit with an ENT for ear pain the week prior and states “they offered steroids and I didn’t think anything of it, I just agreed.”
The date was May 28, 2020 and Naema had been a healthy 29-year-old up until that point. Sometime after her run, Naema began vomiting, developed dizziness and a relentless headache. Zuhira, Naema’s aunt, called 911 when she found Naema lying on the floor, dizzy and vomiting. “This entire time both Naema and I, and everyone else, thought it’s just a headache- it's nothing more, it's nothing more.” Little did they know that this was the start of a long journey that would change Naema’s life forever, and that she wouldn’t return home for two months.
Not Just a Headache
Naema’s memory of subsequent events is limited. “I just remember being in the Southdale ER. I don’t know exactly how long I was there, but I remember someone coming in and giving me a new vomiting bag- that’s it. I just remember that and then blacking out.” When trying to recall what happened at this point, she describes it as “this weird, out of body experience I had. I just remember – this sounds cheesy – my body just going out into some dark sky that was lit up with stars and no sense of time. I remember hearing voices but not faces. I remember hearing ‘there is nothing we can do for this girl’. I don’t know if that was actually said or I imagined it. I just remember praying to god like- ok they can’t do anything, you gave this to me, please take it away. I’m not ready to die. I’m not ready to die. I don’t want to die now.”
In the hospital, a CT head was obtained around 2:15 a.m., which was suggestive of bilateral transverse sinus thromboses. Though Naema had initially been awake and alert, shortly after her CT at approximately 2:30 a.m., the ED provider returned to inform Naema of the results and found her unresponsive, posturing with sluggish and dilated pupils. She was emergently loaded with antiseizure medications, a heparin infusion was initiated to begin thinning her blood, and she was given mannitol to reduce the swelling in her brain. Fortunately, her exam improved and she started talking again and following some commands. Naema was admitted to the ICU for close monitoring, but her family was unable to be with her due to pandemic visitor restrictions.
Head CT prior to surgery
The diagnosis was confirmed with an MRI/MRV scan that looked at her brain and blood vessels, and which also revealed the development of a new left cerebellar hemorrhage. Her doctors attributed these findings to being most likely the result of hypercoagulability, or a higher tendency to form clots. In her case, this higher clotting tendency was most likely related to oral contraceptive use. At this point, she was drowsy but following commands. While Naema’s family vividly recalled the moment they were informed of the diagnosis, Naema did not recall being told about the stroke or talking to her family on the phone. Zuhira recalls, “the nurse told me Naema had a stroke and the way she explained it, it was just a minor stroke and within a few days, she was going to be out of the hospital.” She recalls being in disbelief. “I said I want to talk to Naema because I want to make sure she is actually there and what they’re telling me is actually true. My niece is only 29 years-old, how is she going to have a stroke? She was exercising, she is living a healthy lifestyle, she is one of the healthiest human beings I know. How is this happening? Strokes happen to 70 year-olds, not 30 year-olds.” She goes on to share, “It was the most stressful time of our lives. Naema’s mom and dad were in shock. Her dad couldn’t believe it – that his healthy daughter had a stroke.”
By the end of her first day at Southdale hospital, in light of the new cerebellar hemorrhage, Naema’s anticoagulation was switched to a lower intensity and she was transferred to the University of Minnesota Medical Center in anticipation of possible endovascular therapy.
Feeling in the Dark During the Pandemic
That night, her cerebellar hemorrhage increased further in size and she developed hydrocephalus as a result—a buildup of cerebrospinal fluid due to an obstruction of flow. This prompted the emergent placement of an external ventricular drain (EVD) to drain the excess fluid that was building up in her brain, and the pressure was found to be dangerously high–more than twice the higher range of normal (40cmH20)! Within twelve hours, Naema was emergently intubated and taken for a thrombectomy to remove the clots from her venous sinuses. Further, because the hemorrhage had already expanded and there was a continued risk for worsening brain swelling, a suboccipital craniectomy was also performed to remove a piece of the back of her skull to allow her brain to decompress.
As Naema’s family processed the first 24 hours of her hospitalization, her aunt took on the role of being the main point of contact for Naema’s family. Her aunt remembers, “every time I called the hospital, they kept telling me things are worse. Not once did they say things are getting better – up until she started waking up from the coma. Sometimes you see things are getting worse, but you see there is a light at the end of the tunnel. But at that point, there was no light, everything was so dark. All we kept hearing was she is going to die. And on top of that, Naema’s parents couldn’t come in to see her.”
While things were expected to improve, she developed refractory intracranial hypertension later that night, in which the pressures in her brain refused to come down despite medical treatment. The left cerebellar hemorrhage had expanded even more, and there was now a new right cerebellar hemorrhage along with intraventricular hemorrhage. Based on these new findings she returned to the OR for a second decompressive craniectomy to remove additional parts of her skull, in order to make more room for further swelling. Once again, there was hope for improvement.
Unfortunately, Naaema’s intracranial pressures remained persistently elevated despite these surgeries, and on the sixth day after her hemorrhage the decision was made to initiate a medically induced coma using pentobarbital, a powerful anesthetic medication. From June 4th through 11th, Naema remained in a medically induced coma, and we, as her medical team, patiently waited for her body to weather the storm. While her ICPs had improved, the uphill battle continued as she encountered many other complications: signs of cortical irritability on EEG that bordered on seizure activity and prompted additional anti-seizure medications; infections; sympathetic storming, in which her body experienced surges of uncontrolled hyperactivation; and severe tongue biting and teeth clenching that intermittently required paralytic medications. Nevertheless, despite her mounting problems and growing concerns for whether she would survive during this rough patch, Naema managed to weather the storm. On June 11th, it was time to wake her up from the medically induced coma.
As we slowly weaned off sedation, Naema showed seemingly small but meaningful improvement. Her aunt Zuhira always looked forward to hearing from our team everyday—but now, more than ever, she awaited some good news. “I was waiting for your call all the time. I would call her dad and say, ‘your daughter moved her fingers!’ I didn’t know what it really meant but I was excited because you were excited.” She recalls the overwhelming happiness and relief Naema’s family felt when I called to let them know that Naema was now moving all of her extremities. “I remember telling the whole family and her mom feeling so thankful and excited – a little while later, she [Naema’s mom] came back to me and said, ‘okay wait, what does that mean though?!’ I said I don’t know but the doctors were happy, so I’m happy!”
A week later, Naema underwent placement of a tracheostomy and gastrostomy tube to facilitate her prolonged period of recovery. She also received a shunt to continue draining the fluid from her brain in the long-term, after her EVD was taken out. After a long and arduous course, which Naema is still piecing together, the first thing she recalls is waking up with a breathing tube and with restraints and mitts on her hands. She recalls using her eyebrows to communicate: “I couldn’t talk and I remember using my eyebrows for yes-no questions. I remember feeling frustrated.”
The Road to Recovery
Naema improved so much over the next few weeks that, on July 1st, she had her tracheostomy removed forever and was discharged to an acute rehabilitation facility, where she began the next chapter of her journey. Naema shares, “the thing I struggled with still the most was independence. It’s good I can go to the bathroom and do my own thing. It started out with people lifting me from the toilet. Now I can lift myself up with both of my arms.”
On July 29th, Naema was discharged home with continued physical therapy and a home nurse. She was relieved and happy to be going home after a two-month long course. When asked what she was most looking forward to doing at home, she says, “I missed food. In rehab, there was a TV and I started craving weird things…like Taco Bell. I don’t even like Taco Bell!” But when asked if she ever got some, she says: “Not once!”
While she still required a gastrostomy tube when she was sent home due to continued dysphagia, Naema has since progressed with her diet and is looking forward to having her feeding tube removed next month. “In rehab was the first time hearing that I had to keep the feeding tube and I figured it was for life. There was no light at the end of the tunnel, it was like all right, I have to keep this forever. But I got cleared for soft foods and I’m eating now!”
Life After Rehab
Today, Naema and her aunt Zuhira laugh during a call, as they reflect on both the good and bad days she had during the last year despite all the obstacles along the way. “Now we are here smiling at her and we can laugh as we look back,” says Zuhira.
Naema admits that initially, she didn’t feel like all these things had actually happened to her. “Last summer, subconsciously I didn’t want to know what happened. I was in this weird, blissful state where all I kept thinking [was] that I am grateful and I am going to recover. Back in October 2020 [was] when I started asking questions. I’m sure at some point, people explained this to me,” says Naema, “but it just didn’t register in my head.”. She continues to learn about her hospitalization every day through stories she is told, and she has gained an understanding of the gravity of her illness from the way her family and medical team react to each little victory.
“In October, my neurosurgeon came into my room when someone was walking me to the bathroom. He said, ‘it’s so nice to see you up and going to the bathroom’. And then in January, I was writing in my journal and he wanted to see me write. In my head I thought, ‘oh my god, what is he talking about?!’” She laughs. “I’m like, ‘so you were really expecting the worst!’”
While Naema’s main focus initially was her physical health, she is now also learning to face the mental and emotional impact her hospitalization has had on her. “Right now, I’m five weeks from my last hospital stay and I’m touching the back of my head and it feels flatter. But I keep thinking what if something crazy happens, something I’m not aware of? I don’t have a CT or MRI scanner in my house, and even if I do, how am I going to save myself? Maybe that’s anxiety coming up. I still struggle with that fear. A year ago, I didn’t think a stroke would happen. How do I adjust and become comfortable with the unknown now?”
She has found one way to cope with this through her new Instagram account, where she can connect with stroke survivors while sharing her story and recovery process to inspire others. “What’s helping me now is when I look at other people’s stories. It’s so important not to feel alone in all of this. Even though I’m surrounded by family and friends, it’s different when I hear someone else talking about their story. There are so many resources and people out there who have been through this and can talk about it.”
Her advice to anyone who goes through this is: “Recognize that every person’s experience is different. I’d let them know the medical changes and rehab that they’ll go through. Being patient is important. What I used to consider small goals became big goals, like breathing on your own or swallowing. Just think about how many times we swallow per hour and how we take that for granted. I was patient with myself [early on] but it’s hard to stay motivated, especially because of the loss of independence. But I’m getting better at it. My aunt [Zuhira] is always taking pictures and videos and I’m grateful for that, because who knows where I’ll be in a year? And those things help to put things into perspective. There really is no timeline for these things.”
Zuhira says, “It’s been amazing watching day by day how far Naema has come. It’s insane how things were, what we were expecting, what we were told, and how surprised we – friends, family and even doctors—are with how well you’re doing. I think for me and Naema’s mom, you guys were literally our heroes – you, the other physicians and the nurses.
Naema was a high school math teacher a few years ago, and more recently became a student advisor—a job she had to quit in light of her ongoing rehabilitation. “Last week I went in to clean out my work office, a place I never thought I would go back to clean up my things. I always thought things would be on my time.”
She remains optimistic, though. “I’m glad to think about what I’m going to do next. This has pushed me to think about things I didn’t think about before the stroke. I want to go back to school. I’ve been saying that for a while. I used to think if I go back to school, I would do something that would make me some more money and live more comfortably. Now, whatever I decide to do career-wise, I definitely want to do something I enjoy – like art. I did enjoy teaching math but when I became a math teacher, I was thinking ‘logic, logic’. Now I want to do something more for myself.” Naema also emphasizes the importance of family in her life and hopes to move closer to her parents.
Although Naema has experienced a few setbacks since being discharged from rehab, including malfunction and infection of her shunt, she looks forward to learning more about her hospitalization and continuing her recovery process as a young stroke survivor. “If anything bad happens, I’m like, ‘okay, I survived this, I could do anything, I could get through anything.’” Naema’s story and optimism in the face of adversity gave our team at the University of Minnesota a sense of hope as we faced the first wave of the COVID-19 pandemic, and we hope that her story and tenacity will inspire others, too.