What is cerebrospinal fluid hypovolemia?

pediatric cases





Pediatric cases1)19 year-old man (College student)

Pediatric cases2)12 year-old girl

Pediatric cases3)12 year-old boy

Pediatric cases4)18 year-old man

Pediatric cases5)13 year-old girl

Case 1: A wish – by Sena Ishii, Nagano Public Senior High School, Nagano Prefecture

I became ill during the spring of my sophomore year in junior high. Four days before an athletics tournament, in which I was going to represent my school, I developed sudden, severe dizziness and nausea. I could not stand and did not attend the competition. Since the first attack, my symptoms increased daily, with no recovery. In addition to the dizziness and nausea, I developed excruciating headaches, limb pain, and general malaise. I also suffered from thought disorder. Since I could no longer stand and was bedridden, I could not attend school or play basketball.


Three to four months after symptom onset, I still did not have a diagnosis and spent my days on my back, staring at the ceiling. Although there had been repeated consultations with the doctor, the cause was yet unknown. The symptoms did not resolve following drug therapy. It hurt badly. I really wanted to go to school; however, I could not. I really wanted to move; however, I could not. My mother desperately supported me while I lay on the bed. She visited the hospital every day and encouraged me that I would heal with time. At this time, I got a letter from basketball club coach; the contents of the letter were as follows: “Get over it and come back to the court. We are waiting." It was curt, but I was determined to stand on the court again.

I was diagnosed six months after symptom onset. My mother, who had been doing her own research, suggested that my symptoms were due to a spontaneous cerebrospinal fluid (CSF) leak. If CSF leaks at a rate greater than that of its production, it can lead to a decreased skull volume, affecting brain function and causing a variety of symptoms. The treatment costs are not covered by insurance, since the approval of the Ministry of Health, Labor, and Welfare has not been granted. Since this disease is rare, patients suffer mentally and economically, and some choose to end their life.

A CSF leak can occur owing to trauma to the head and body. Although I was initially hospitalized in the prefecture of the university hospital, since it could not be treated I was told to rest at home. Although it was midwinter, I went to a hospital close to my house to receive an infusion every morning; however, the CSF leakage still did not resolve.

My mother, who had not given up, found a specialist at Sanno Hospital, Tokyo, Japan, who recommended a treatment plan. This specialist was positive and was different from previous doctors. The recommended treatment was a blood patch, which required a needle to be inserted into my waist. Although this led to severe pain in the whole body, the treatment relieved some of the symptoms.

I was able to attend school, although not more than once a week because I was still lethargic. There were instances when I had to be carried to the infirmary. I was always afraid that I would suddenly become unconscious; hence, I had to be quite cautious, since I did not want to my friends to worry.

I felt like I had nowhere to go. I was sad and cried at an isolated area at back of the school building. I would idly watch the gymnasium being dismantled, reminiscing about the days I had spent running through the basketball court. Although I wanted to honor my coach, I decided to retire before my last game since I was no longer healthy. I had to give up all of the things that I wanted to accomplish since the day I got sick.

It was inevitable that a painful decision had to be made. I gave up attending the local high school, and enrolled in Nagano-nishi homing high school. Although I was initially apprehensive, I think that it was a good decision to enter this school. I am allowed to rest my mind and body once a week. I also belong to student council, and was the vice-president of the school year. It is enjoyable to attend school every week. Thanks to my mother’s devoted support and the care provided by the high school, I feel positive again. Although I still feel ill sometimes, this does not distort the fact that each day is a treasure. I am very happy that I can spend each day peacefully.

Although I enrolled in Nagano-nishi high school owing to a spontaneous CSF leak, this has benefited me. Although I was initially against the idea, two to three decades later, I can look back proudly at what I accomplished even when times were very difficult for me.

However, I do not want to have gone through that difficult period in vain. I hope to give back to the people who have supported me by becoming healthy and educating people about this disease, so that others will not have to undergo the same hardship to reach a diagnosis.