What is it, actually?
Hydrocephalus
Hydrocephalus is a brain condition. In layman's terms, this condition was often referred to as "water on the brain." It involves an accumulation of cerebrospinal fluid (CSF) inside the skull, which enlarges the brain ventricles. Since a newborn’s skull is not fully formed, hydrocephalus can cause deformation (hence the term "water head"). However, there are different types of this condition. Hydrocephalus can also occur if there is a mechanical obstruction to CSF flow (such as a tumor, deformation, etc.).
In my case, the posterior cranial fossa is already narrowed due to Chiari malformation, and additional CSF buildup could be caused by a pineal cyst. In short: If the CSF cannot drain, intracranial pressure increases, which can be life-threatening.
Since I can remember, I have had recurrent pain attacks. That’s what I called them, at least. For years, I was repeatedly diagnosed with migraines. However, my gut feeling told me otherwise. During these episodes, I would experience a kind of "cotton head" for about 30 minutes, and pressing on my eyelids would be painful. This was my window of time to get home as quickly as possible. After that, I could only sit as still as possible in one position. The headaches were usually a 10/10. Immense head pressure, eye pain, vision disturbances. I couldn’t stand up, lean, or lie down – and this lasted for 6 to 18 hours. When I tried to change my position, the head pressure became so intense that I was at a loss for words. Migraine medications did not help at all, nor did anything else. Eventually, I also stopped calling the doctor because they always wanted to move me. Sometimes this went so wrong that I lost consciousness and had dissociative seizures. I also often had to argue and justify that it was not "just" a headache while in this condition. I was even insulted for calling the doctor for headaches or simply ridiculed.
So I tried to endure it.
In 2021, I met a doctor who began to "study" my complexity and took a detailed interest. It eventually became apparent that it was not a migraine attack but increased intracranial pressure during these episodes. In the worst case, this can be life-threatening. In April 2024, I received a VP shunt. This is a catheter in the head, connected to a valve behind my ear and a tube that drains the CSF into my abdominal cavity. It sounds crazier than it is. It certainly saves lives and improves quality of life. I am grateful every day I met this doctor.
Will it keep my pain attacks away? Fingers crossed.
Cranial fossa