Neuroimmunology Program - IDIBAPS

Real Cases

I survived autoimmune encephalitis. Mauren Rivera Serrano, Costa Rica.

My story

In 2016, I had headaches that were not removed with the pills, but I thought it was due to menstruation. However, being in classes at the university, on August 12 in the early hours of the morning, I had a very strong seizure (I had never had one in my life), I lost consciousness and control of my body. My classmates told me that I was screaming a lot, I was biting, my body was trembling and I ended up lying on the floor without control. A classmate helped me, her name is Sofia, she gave me first aid because she knows about seizures and called for emergencies and my dad. The paramedics at the university helped me, but they did not have the necessary medications to reassure me. My father saw me in that state and tried to help but I did not recognize him and I did not let him touch me.

I was transferred by ambulance to Emergencies at the Max Peralta Hospital in Cartago, Costa Rica. There they tied me on the stretcher because I did not stay still and had hallucinations (all this I do not remember but my parents were there). My mom came to the hospital and saw me on the emergency stretcher. The hospital doctors believed that I was under the influence of some drug, that I was intoxicated or that I had acute schizophrenia, because of my strange behaviors, my dilated pupils and because I shouted things that were not real. My head was so inflamed that my eyes closed alone.

In the hospital they decided to put me in an induced coma to be able to analyze me and get a CT scan. Nothing strange comes out in that exam, so they proceed to make a lumbar punch, because it was known that I had inflammation of the brain but the causes were not known, Apart from that the blood tests came out clean.

I am transferred to the Calderón Guardia Hospital in San José, Costa Rica, in the capital, because I am still in critical condition and only in that hospital did they have the equipment and the staff to know what I had. First, they do an angiogram to analyze my brain, magnetic resonances and then they do more tests.

Being in an induced coma, I put a respirator, peripheral routes and a central and other tubes in my body and serums. I was still in critical condition. I was in that state until August 15 (mother's day in my country), I woke up at 5:15 am (I do not remember waking up) but my mom says I opened my eyes and I started crying, she did I recognized During that day and the next I had an excellent evolution, they took off my respirator and put on a mask to breathe, I started to sit down, and I tried to eat by myself (I do not remember any of this). The doctors to see my early "recovery" decide to return me by ambulance to Max Peralta Hospital without medication, because according to them, the crisis was over.

In the ambulance I begin to be conscious: I remember sitting in the ambulance, happy, smiling a lot because the paramedics said that it had been a miracle that it was this good so fast. They had background music and the day was sunny. But, I started to feel a headache and also in my body, so they put me on the stretcher. When they arrived at the Max Peralta Hospital, they placed me in the wheelchair and then in the critical room.

The next day in the morning, I convulsed again, did not know what to do the doctors and again I was irritated and lost the notion of reality and also shouted. They tied me again. In the afternoon they contacted the neurologist Juan Antonio Valverde. He analyzed the case, knew about encephalitis and gave me a series of medications to calm me and treat me. I continued in that state, misplaced, I had many blood tests, I also had an electroencephalogram, I was checked by the doctors and my parents 24 hours a day. I used diapers, they bathed me in bed, and I had a soft diet but I vomited a lot. I had no voice and I was very weak. That's how two weeks went by.

The first memory I have in the hospital after that time, were some nurses who came to change my diapers and in my mind I thought: why do I have to use diapers? From there I started to be conscious. I understood that I was in a hospital, I remembered who I was and my family and my friends, but I did not know why I was hospitalized; I only knew one thing: I had to recover no matter what it cost.

I started to try to move myself, but it was a challenge, I could not hold anything with my hands, I had no voice (because of the respirator), I had bad eyesight (I saw double things), the ear had it very sensitive (all noise it bothered me), I wanted to eat but I threw up, I could not stand (I did not have balance or strength), I dreamed strange things and I had hallucinations, most of the time I only slept.

Little by little that was changing, I moved to another room (I was not in critics) family and friends came to see me, tried to talk, to take things with their hands and to go in the wheelchair to the toilet. Some of the greatest achievements were: eating with the spoon alone, brushing my teeth, changing in the toilet, going to the bathroom standing up, starting to put my feet on the floor, taking a pencil and trying to write, listening to music, seeing myself in the mirror (without being blurry), combing my hair and many other things.

I had ultrasound of the abdomen and ovaries, to see if they had a tumor that produced something that damaged my brain, but it was clean. I had nothing, so they made a lumbar punch, they sent it to Spain in Barcelona with Dr. Dalmau, thanks to that I was diagnosed with Autoimmune Encephalitis by the antibody Neurexin 3 - Alpha.

I was hospitalized for one month until I was discharged, where I continued with the neurologist, rheumatologist and physiotherapist. In addition to many medications.

My life after Encephalitis

In the process of recovery, I lost memory, I gained a lot of weight, I had severe acne and I lost half of my hair. She said incoherencies and she was tired most of the time, she ate a lot sometimes because of anxiety, but she also vomited. Besides, being in a coma is like being dreaming, only that dreams can be beautiful or ugly and sometimes you can feel that you are leaving this world, they are unique experiences that help you grow and see life with different eyes.

My life now is totally different, a year and a half later, I can have a normal life, study at the university, I am a draftsman, a violinist, I can dance, run, sing, write, eat ... Everything is normal. Now I am a very brave woman, a fighter, someone who smiles more and appreciates every second. Someone who inspires others, a girl with dreams and goals who will do everything possible to get them, someone who gives love without measure, someone who takes advantage of every breath; because I already went through the strongest, now I just have to live, knowing that we all have a purpose and we all have to leave a small seed in the world.