- CASE FILE
4 week coma due to Viral Encephalitis in 2018; being treated for Autoimmune Encephalitis currently with no results
ABOUT THIS CASE FILE
My wife Seana has had quite the journey over the past year. (I am writing to you on her behalf) On the afternoon of July 27, 2018, Seana came home from work early with a headache, dizziness, and a fever of 101. We tried fluids, tylenol, sleep, etc., but nothing seemed to help discontinue the symptoms. In fact, they got worse. She became borderline delirious because she was so agitated and in pain. We decided to try a shot of NyQuil that evening to see if she could sleep it off... Seana slept through the night, but the next morning is where her story begins.
At 7am on July 28, 2018 I tried waking Seana up. I shook her, called her name, even flipped her eyelids open, but got no response. She had a faint pulse, so I checked her temperature; 104.1! After scooping her up and putting her in the front seat of the car, I drove to Maple Grove hospital. Seana was taken into the ER and they immediately began attempting to bring her body temperature down. The ER doc even said aloud, "this isn't good". After a few hours in the ER with an ice blanket, IV fluids and some pain meds, they had managed to lower Seana's temp to 102. She was still unresponsive to all stimuli, so the doctor decided to admit her for overnight observation.
The next morning, July 29, 2018 North Memorial hospital called to have Seana transferred. They had learned of her condition through Seana's overnight care team. She was rushed via ambulance to North Memorial Hospital in Robbinsdale and taken directly to the South 6th floor ICU. She was greeted by the medical team: Neurology, Internal Medicine, Infectious Disease, and a team of nurses. An MRI was taken within the hour Seana arrived and revealed that she had a tremendous amount of swelling on her brain stem and up into her brain. Seana was diagnosed with "Viral Encephalitis". The root cause and type of virus is still unknown to this day!
Seana spent 3 weeks in the ICU at North Memorial Hospital. During that time, her fever maintained around 100 degrees, her heart rate was racing anywhere between 100-115, she was pale, rigid, and dying. A tracheostomy was performed to protect her airway, and a PEG tube was inserted through the side of her abdomen so she could receive nutrients. Seana's brain showed no signs of healing after heavy doses of IV steroids. An EEG test showed she had normal brain wave activity, she never once stopped breathing and her coma was non-medically induced. It was swelling on a specific part of her brain that was keeping her asleep. Everyone on the medical team was dumbfounded. There was no direct reason why she was in the state she was in.
On August 16, 2018 it was decided that Seana would be transferred to Regency Hospital in Golden Valley. Still in her comatose state, we left the 6th floor ICU at North Memorial with the knowledge from the neurologists to expect status quo for the next 2-3 months. The severity of the swelling on her brain had to heal itself. It just so happens that a week later, she woke up!
On August 23, 2018, after 4 weeks of a coma, Seana opened her eyes for the first time. Now the real work began! Seana had to learn to do life all over again. The occupational and physical therapy teams were paramount during this stage of recovery. She began with communication through blinks, followed by being able to point at a command board to tell us what she wanted/needed. Once the tracheostomy tube was removed from her windpipe, Seana was able to start learning to talk again. After that came feeding herself, something she hadn't done for a month... Seana also had to learn to walk again. Multiple therapy sessions a day were spent trying to regain strength and balance in her legs.
After 3 weeks at Regency Hospital, on September 11, 2018, Seana was transferred back to North Memorial to continue her rehab. Twice a day she was taken down for Physical, Occupational and Speech therapies. She made daily improvement and began to gain more independence. It was a grueling 3 straight weeks of this routine until Seana was finally discharged to come home. She spent 9 weeks total in the hospital; away from her son, her dogs and life in general, but on October 1, 2018 Seana was home again.
Out-patient therapies started right away. Seana continued to attend physical, occupational, and speech therapy twice a week, 3 hours each time. Little by little, day by day, Seana got better. Her balance was coming around, her memory was sharper and her personality was in full affect. There were good days and bad days, but as the neurologist said, you must give your brain time to heal. Throughout her occupational therapy, Seana did a lot of hand-eye coordination work. Her hands had been numb for quite some time, but now they were painful. After an EMG test and a visit to Twin Cities Orthopedics, it was discovered that Seana had carpal tunnel in both her wrists. It was determined that carpal tunnel developed while she was in her coma. She was constantly postured and rigid within her hands and arms. Surgery at the end of December helped to correct the carpal tunnel syndrome.
It was also in December that we first filed for Social Security Disability. After an extensive compiling of information and reports, we sent off the application with bated breath and fingers crossed. 3 months later, in March of this year, we received a SSDI denial letter in the mail. It was decided that she was “not disabled under their rules”. Seana reached out to a SSD attorney and refiled her application for disability.
Seana had been out of a job for almost 9 months. She felt worthless and cooped up at home. After finding a part-time job with Cub Foods, she felt that she could finally say she was back, not fully, but better than 9 months prior. It was 2 weeks into her new part-time job that Seana began experiencing headaches again. On the morning of April 23, 2019 Seana awoke with a piercing headache, extremely uncoordinated and uncontrollable dizziness. Her neurologist was adamant that she head back to the hospital for an immediate MRI. That afternoon, an MRI at North Memorial Hospital showed three new areas of swelling on her brain. Nothing involving the brainstem, but swelling, nonetheless. Seana spent 5 days in the hospital during which she was treated with steroids and pain meds. Her coordination returned, and although her headache remained, the doctors found no profound reason to keep her in the hospital.
Since the swelling on her brain in April responded to steroid infusions, the neurologists changed their course of action. It was no longer a virus they were dealing with. The team at Minneapolis Clinic of Neurology thought it best for Seana to take a trip down to the Mayo Clinic for a more in-depth look at all her charts. In June Seana and I traveled back and forth to Mayo, a couple days a week, for three weeks. Numerous MRI’s, CT scans, blood, urine, and spinal fluid lab tests were performed. It was determined that Seana has a form of Autoimmune Encephalitis. What kind exactly, we don’t know. A 12 week, IVIg infusion therapy was ordered
Seana has had a constant “level 5 out of 10” headache since April. Her coordination has not fully recovered. She often times will fall back into her chair after trying to stand up for the first time. Her head feels “wobbly” and she can’t concentrate on anything for extended periods of time without her headache increasing 10 fold. The depression that a traumatic brain injury (TBI) can bring on is a very real and scary thing. She doesn’t want to be alive, because she’s in constant pain, but she continues to battle with the hope of someday being “normal” again. Couple the physical pain with the depression, and then add a second Social Security Disability denial letter to make matters worse. Yes, SSDI denied her claim once again in August and we’ve been told that she has to wait 18-20 months to have her case heard in front of a judge. She’s been ordered by her neurologist not to work. She needs to let her brain heal.
That brings us to present day… We met with her neurologist in Golden Valley this past week due to her symptoms not getting any better. He immediately ordered the IVIg infusions to end and another MRI to be done. Another course of action must be investigated in order to help Seana find relief.