Hello, Jhana’s supporters! It’s your disability advocate and writer, Jhana. I hope you’re all doing well. I’ve been busy with school and other stuff this week. After this class ends, I will start another one, a comic class, which I'm nervous about because it's a repeat. I still don’t know my new graduation date, but I’ll keep you all updated.
In today’s blog, I want to talk about something that happened recently with my insurance coordinator. It really pissed me off, so I want to address it.
It all started last year. I speak with my insurance coordinator only about every 90 days. I told him that my hydrocephalus is not and never will be a disease. They ignored me and insisted on calling it a neurological disease. That’s not what it is.
That’s a misconception, and I’m here to set the record straight in today’s blog. I’ll try to be as calm as possible to enlighten uneducated people who think my disability is worse than it is. My goal is to educate and empower you with the right information about hydrocephalus.
Defining Hydrocephalus: An Overview of the Condition
What do you think of when you hear the word hydrocephalus? What do you think it means? Well, I’m here to explain what it means so you can better understand the disability.
Hydrocephalus is a medical condition affecting the brain. It’s the accumulation of cerebrospinal fluid (CSF) within the ventricles of the brain. This buildup can lead to increased pressure, causing damage to brain tissue. The condition can be congenital, meaning present at birth, but it can also be caused by injury, infection, or tumors.
My hydrocephalus is congenital. I also have other issues connected to my hydrocephalus. For example, I have an Encephalocele caused by a failure in the neural tube. I have occipital encephalocele, which means my encephalocele was in the back. I think of it as a big balloon in the back of my head.
Just to remind you all, I weighed 2 pounds and 3 ounces at birth. A couple of hours after birth, the doctor removed my encephalocele. Then, seven months after that, they had to insert a shunt in my brain to control the cerebrospinal fluid. I had that shunt for 26 years before I had to have a shunt revision because it stopped working. I realized something was wrong when I kept having dizzy spells and headaches. So, I had my revision. It has been eight years since then.
I had disabilities my entire life. It also meant I couldn’t do a lot of things due to my disability. For example, I couldn’t play sports with my classmates, so I needed a doctor's note to get me out of PE. I’ve lived through it. Do you think it was easy not being able to do things like other students? No, it was not.
Understanding hydrocephalus requires acknowledging its various forms, such as communicating how every hydrocephalus flows and differs from others.
The Mechanisms Behind Hydrocephalus: How It Affects the Brain
Cerebrospinal fluid (CSF) circulates through the brain and spinal cord, providing essential nutrients and cushioning.
Hydrocephalus involves an imbalance in the production and absorption of cerebrospinal fluid. CSF circulates through the brain and spinal cord, providing essential nutrients and cushioning the brain. When this balance is disrupted, excess fluid can build up, compressing the brain’s structure.
This increased pressure can result in a range of neurological problems, including cognitive impairment, motor difficulties, and behavioral changes.
Differentiation Hydrocephalus from Neurological Diseases
Hydrocephalus affects the brain but fundamentally differs from neurological diseases such as Alzheimer’s or Parkinson’s. While neurological diseases typically involve progressive degeneration of nerve cells, hydrocephalus is primarily a fluid imbalance.
This distinction is significant because it influences both the treatment approach and the expected prognosis. If hydrocephalus is diagnosed and managed appropriately, patients can lead great lives.
Symptoms and Diagnosis: Recognizing the Signs of Hydrocephalus
Symptoms of hydrocephalus can vary widely depending on age and individual circumstances. The most common symptoms in infants include an unusually large head, irritability, and vomiting. In older children and adults, symptoms may present as headaches, blurred vision, cognitive decline, or walking difficulties.
Hydrocephalus is typically diagnosed through MRI or CT scans, which can reveal the presence of excess fluid in the ventricles. Clinical evaluation is essential for differentiating hydrocephalus from other conditions with similar symptoms.
Treatment options and Management Strategies for Hydrocephalus
Treatment for hydrocephalus often involves surgically placing a shunt, a device that helps drain excess CSF from the brain to another body part where it can be absorbed. In my case, the excess fluid goes from my brain to my abdomen. This treatment is not a one-time fix but a lifelong management process that requires regular monitoring and adjustments to the shunt, as well as addressing any underlying causes.
The ongoing management of this condition may include regular monitoring and adjustments to the shunt, as well as addressing any underlying causes.
Lastly, I want to say that hydrocephalus is not a disease. To me, a disease is something you can die from. Hydrocephalus affects my balance and eyes, and it can also cause headaches and learning difficulties. So, don’t confuse a disease with a condition or disability that one can live with.
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