• M.blue Shunt
  • HCandME App - hydrocephalus diary
  • MIETHKE App
  • Articles
  • Shunt infection: How it develops and how it can be prevented
    • Shunt therapy is the most common treatment for hydrocephalus, but carries the risk of serious complications such as shunt infections. Find out more about symptoms, causes, treatment options and preventive approaches such as antibiotic-impregnated catheters.
  • LP shunt vs. VP shunt
    • The choice between LP and VP shunt is essential for the successful treatment of hydrocephalus. This article provides a detailed comparison, looking at the indications, benefits and potential risks of both types of implantation - informed insights for better treatment decisions.
  • The Innovative Leap to Telemetric Pressure Sensors
    • Telemetric pressure sensors are setting new standards in the hydrocephalus shunt therapy. The article analyzes the technical limitations of conventional ICP sensors and presents trend-setting innovations in the field of measurement with telemetric pressure sensors - for more precise and efficient treatments.
  • ICP – the measurement of intracranial pressure
    • The measurement and interpretation of intracranial pressure (ICP) is a very helpful aid in the diagnosis and treatment of many brain diseases. The article explains the technical requirements for ICP measurements, the interpretation of ICP values in intracranial pressure measurements and their significance for effective treatment planning.
  • Over- and underdrainage - the most common “side effects” of shunt systems
    • Shunt systems in hydrocephalus therapy have a long history, but over- and underdrainage are still common complications with their potential consequences, such as slit ventricle syndrome. The article looks at the causes, consequences and therapeutic approaches of both problems and discusses whether gravitational technology offers a possible remedy.
  • Foundations of fluid mechanics, or of beakers, bottles and people
    • The article introduces fluid mechanics and explains how the cerebrospinal fluid works in the human brain. It explains the hydrodynamics in the shunt system and shows why the circulation and pressure of the cerebrospinal fluid are important factors for optimizing shunt therapies.

 

We met Julia in 2018. Julia has acquired hydrocephalus. She was diagnosed when she was 14 years old. While she was doing an internship with us, we did a short interview series with her about her life with hydrocephalus and shunt. We've stayed in touch over the years and she's also had a lot happen on her own journey with her hydrocephalus. Today she would like to give you a little update.

Many people that I meet or talk to about my hydrocephalus ask me one question first: "Does that limit you in any way?"
For a very long time, even in 2018 during my video shoot with MIETHKE, I used to answer "No" to that question. But that was somehow not quite true - I would call it "professional repression".

A lot has happened since then: I started studying and got problems with my shunt right at the beginning. The time had come when I could no longer suppress my thoughts and feelings about my life with hydrocephalus and had to deal with them. My limitations became more present, but even though I noticed them, I didn't really want to acknowledge them at first. Two revisions later, I spent a lot of time thinking about "productivity" and "performance" and I realized that I had to redefine those for myself: Maybe "productivity" and "performance" could no longer mean the same as they did and do without hydrocephalus. I realized that it really took a lot of energy to constantly go beyond my own limits. Since then, I've spent a lot of time thinking about myself, what I'd like to do with my life, and how I can achieve those goals. By now, I am more or less at peace with my hydrocephalus and yet I answer the question about limitations differently now.

Yes, my hydrocephalus limits me. I know life "before" because I was not diagnosed until I was 14 years old. And if someone asks me: Yes, it was definitely nicer without hydrocephalus. I want to be honest with you and especially with myself. This carefree "not having to worry about headaches" doesn't exist anymore. Due to the hydrocephalus, headaches are of course always an alarm signal for me. I can't concentrate like before and I'm not as carefree as I was before the disease. Too much has happened. Sometimes I still live in my "old life" and get a bit emotional when I realize that things are no longer the way they used to be.

Nonetheless, I don't give up hope. My most important message to all people struggling with their hydrocephalus can also be applied to many other conditions, I think: Never stop fighting for yourself. Listen to your body when you think something is wrong. Don't let anyone tell you how you should feel. All feelings are okay and bad times are followed by good ones!

Living with hydrocephalus has difficult phases, I'll be honest. It's often not pretty or things take a completely different turn than originally planned. But still, I would say: Guys, life with hydrocephalus can also be beautiful! Maybe you have to adapt to the circumstances. Maybe you have to find a new path. Thus, I have changed my original plans and am now doing something completely different. I am studying, maybe it will take me longer than other students, but it doesn't matter. And my hydrocephalus is also there, I can't change that, because it is a part of me. Saying it like that sometimes still hurts, because it makes it more real - but that's also part of the journey.