Headache Long Term Follow-up in Patients Who Suffered From PTCS During Their Childhood
Conditions: Pseudotumor Cerebri
Sponsor: Bnai Zion Medical Center

Headache Long Term Follow-up in Patients Who Suffered From PTCS  
During Their Childhood 
 
1.7.24 
PI Jacob Genizi 
ERB # BNZ 72-21  
 
 

1. Introduction 
Pseudotumor Cerebri (PTC) is an uncommon syndrome characterized by increased 
intracranial pressure due to an unclear (idiopathic) cause, leading to pressure on the optic 
nerve and headaches. The diagnostic criteria include signs of increased pressure: headaches 
and vomiting, optic disc swelling (papilledema) observed in eye examinations, normal brain 
imaging, and elevated opening pressure in lumbar puncture with normal CSF fluid content. 
The prevalence of the syndrome in the general population is approximately 1 in 100,000. The 
syndrome can occur at any age, including in children, where the incidence varies across 
different studies from 26% to 85%. In women of childbearing age, the prevalence increases 
to approximately 3.5 per 100,000. Among women whose weight exceeds the ideal body 
weight, the prevalence reaches 19 per 100,000, which is 19 times higher in obese women of 
childbearing age. 
In prepubescent children, most patients are young, thin boys. The most common symptom of 
PTC in adults (occurring in 90% of cases) is headache. Another symptom is transient vision 
loss, ranging from mild blurring to complete loss of vision, which may accompany headaches 
or occur independently. Among the pediatric population, symptoms vary by age: older 
children and adolescents typically complain of headaches accompanied by vomiting, similar 
to adults, while younger children may present with irritability, diplopia, strabismus, and stiff 
neck, and may even be asymptomatic. In infants, the only symptom might be sleepiness or 
apathy. In all patients, there is some evidence of optic nerve disease, such as slightly reduced 
visual acuity, color deficiency, or visual field defects. 
The prognosis concerning optic nerve damage is good. Studies have shown that only 3-4% 
suffered from mild vision impairment, and severe impairment was extremely rare. But what 
about headaches? Short-term studies (3 months) have shown that about 70% will stop 
complaining of headaches, with an apparent link between the initial presentation and the final 
outcome. 
The goal of this study is to examine how many will continue to suffer from headaches 10 
years after the initial diagnosis, what factors predict these complaints, and whether and how it 
is possible to intervene to improve this outcome. 
 
2. Research Hypothesis 
A significant portion of patients diagnosed with PTC during childhood will continue to suffer 
from headaches despite the resolution of elevated intracranial pressure. 
3. Research Methods 
The study will be conducted prospectively, utilizing existing medical records of patients 
previously diagnosed with PTC. Patients diagnosed with PTC who were under follow-up in 
the pediatric neurology clinics at the following centers: Bnai Zion, Ruth-Rappaport Rambam, 
Hadassah Jerusalem, Schneider Petah Tikva, Dana Tel Aviv, and Hillel Yaffe Hadera, will be 
contacted by phone. After obtaining informed consent, a telephone interview will be 

conducted, gathering information about headaches and quality of life. Information regarding 
PTC will be extracted from the medical records. We will use a demographic questionnaire to 
assess the type of headaches, the HIT-6 questionnaire to evaluate headache severity, and a 
validated quality of life questionnaire. 
Inclusion Criteria: Patients who were diagnosed with PTC in childhood according to 
accepted criteria, have diagnostic information available in their records, are willing to 
participate in the study, and complete the questionnaires over the phone. 
Exclusion Criteria: Patients who refuse to answer the questionnaire, or those without details 
of their initial diagnosis or follow-up in the medical records. 
4. Variables 
The variables in the study will include the current status and nature of the headaches and 
quality of life, compared to the demographic, clinical, and laboratory measures at the time of 
their original diagnosis. 
The initial diagnosis of PTC will be extracted from the records, including: 
 
Age, gender, height, and weight (BMI) 
 
Initial presentation, with emphasis on the duration of headaches before diagnosis 
 
Eye examination findings, including fundus examination 
5. Statistics 
Data analysis will be conducted using statistical tools in SPSS. The analysis will allow for the 
characterization of the patient population and the examination of the relationships between 
the various demographic, clinical, and laboratory parameters studied, as well as their mutual 
influence. Statistical significance will be determined with a p-value of less than 0.05. 
6. Ethical Considerations 
We will contact parents via text message to request their permission to reach out to their 
young/adult children to obtain information about their current headache status and quality 
of life. After receiving their consent, a link to a full informed consent form (according to 
the patient's age) will be sent, and a phone call will be made. The study was approved by 
the local IRB BNZ 72-21. 
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