Living a Rockin’ Life


Here’s an inspiring story from Sarah Renehan, a 24 year old from a little town in south Australia, who reminds us to keep rockin’ even if we’re faced with challenges or are having a bad day.

Photo courtesy Sarah Renehan

I’ve had hydrocephalus since I was born and have had seven revisions, four of which have been this year. A revision is when they replace the shunt system because it is either blocked, stopped working or infected. 🙂

I’m not disabled and for this I am grateful because it is my mission in life to be able to help those who have not been as fortunate as I have. I run a website called “The Brain Drain Project” to raise money and awareness for families who have been affected by hydrocephalus and spina bifida. My journey dealing with this condition has taught me, if nothing else, that there is always someone out there worse off than me, and I strive to help these people. I have been blessed with a beautiful family that supports me through everything, and the love that I have for them also drives me to give it all back through helping others.

I’m not sure I have the right to give advice to people with the same condition. I feel that I have been a lot luckier than a lot of people so, even though I have this condition, I probably still don’t understand what a lot of people have to go through. I do, however, hope that people have the courage to go on, fight for the things that they want to achieve no matter how impossible it seems because these people are an inspiration, and inspiration is contagious.

Photo courtesy indiemediamag.com

I was four weeks old when my family found out that I had hydrocephalus. I am also the first born in my family, so naturally they were pretty upset and freaked out, but after my first operation, they saw what having the shunt did and how it basically made me a normal baby girl. They adapted really well.

I don’t have spina bifida, but I cannot live without my shunt. My recent operations have shown me just how much my brain relies on it to survive. I had severe migraines, projectile vomiting and seizures because the shunt was completely blocked. Like I said, though, I am very lucky compared to a lot of people.

Photo courtesy Sarah Renehan

My dream in life has always been music. I write songs along with my sister, and we play them in our band. I want to get our music out there. I want to get our message out there. I hope to use our music as a way of promoting my other dream, which is Project Brain Drain. I want to help others who are not as fortunate as me.

In my spare time, I participate in karate, play badminton, basketball and squash. I play a lot of guitar, sing and write new songs for my band, Calling Utopia. Karate and songwriting, I have found, are the best way to forget about the bad day that I might be having, and I always come away from these things with a great feeling of accomplishment.

Photo courtesy Sarah Renehan

To everyone out there with this condition, keep your chin up, stand tall and proud and never give up! Determination and positivity will get you far.

Life is short, use it the best you can. I hope the picture of me performing on stage with the band will inspire a few people to follow their dreams. People like YOU, Jason, are the real inspirations! 🙂 xxx

What is hydrocephalus?

Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities of the brain called ventricles.

Symptoms and diagnostic tests

Symptoms of untreated hydrocephalus are variable. During pregnancy, routine ultrasound can detect enlarged ventricles (spaces) within the baby’s brain. In children the symptoms tend to be related to high pressure and may include nausea, vomiting, headache and vision problems. In young and middle aged adults symptoms run the gamut of those seen in children and in older adults and most often include dizziness and vision problems. In older adults with NPH the symptoms are more likely to be loss of function in three main areas: walking, thinking and bladder control.

Infants and Children Young & Middle Aged Adults Older Adults (NPH)
Abnormal Head Enlargement Difficulty Walking Difficulty Walking
Tense, Bulging Fontanel Cognitive Challenges Cognitive Challenges
Prominent Scalp Veins Urinary Urgency or Incontinence Urinary Urgency or Incontinence
Skull bones may feel seperated Chronic Headaches  
Vomiting, Sleepiness, Irritability    
Headache, Nausea, Vomiting, Vision    
Downward Deviation of Eyes    

Photo courtesy Sarah Renehan

The most common initial diagnostic test to determine hydrocephalus at any age is an image of the brain (CT Scan or MRI) to identify the enlarged ventricles (spaces) within the brain that are typical of hydrocephalus. More tests are often performed in adults. The following links take you to detailed information about the signs, symptoms and diagnostic tests for hydrocephalus in various age groups.

Classifications and causes

Doctors often identify hydrocephalus in one of three ways. Congenital hydrocephalus results from a complex interaction of genetic and environmental factors and is present at birth. Though it might not be recognized and diagnosed immediately, congenital hydrocephalus is now often diagnosed before birth through routine ultrasound. Hydrocephalus diagnosed in adulthood may have existed since birth and can still be considered congenital and may be referred to as compensated hydrocephalus. Acquired hydrocephalus develops after birth as a result of neurological conditions such as head trauma, brain tumor, cyst, intraventricular hemorrhage or infection of the central nervous system. If the cause of hydrocephalus is unknown, it is referred to as idiopathic which is most commonly true of normal pressure hydrocephalus (NPH).

Another set of terms you may hear from a doctor to describe hydrocephalus are “communicating” and “non-communicating”. If the cerebrospinal fluid (CSF) flows freely throughout the brain’s ventricular system and the subarachnoid space, it is referred to as communicating hydrocephalus. If there is a physical blockage such as a tumor somewhere in that system, it is called non-communicating hydrocephalus.

Causes

The most common causes of congenital and acquired hydrocephalus are listed below.

Congenital

Acquired

Aqueductal Stenosis

Photo courtesy Sarah Renehan

The most common cause of congenital hydrocephalus is an obstruction called aqueductal stenosis. When the long, narrow passageway between the third and fourth ventricles (the aqueduct of Sylvius) is narrowed or blocked, perhaps because of infection, hemorrhage, or a tumor. Fluid accumulates “upstream” from the obstruction, producing hydrocephalus.

Neural Tube Defect

Another common cause is a neural tube defect (NTD). An open NTD, where the spinal cord is exposed at birth and is often leaking CSF, is called a myelomeningocele. This condition is often referred to as spina bifida. This kind of NTD usually leads to the Chiari II malformation, which causes part of the cerebellum and the fourth ventricle to push downward through the opening at the base of the skull into the spinal cord area, blocking CSF’s flow out of the fourth ventricle and producing hydrocephalus. Please see the websites of the Spina Bifida Association and the International Association for Spina Bifida and Hydrocephalus for more information on neural tube defects.

Arachnoid Cysts

Congenital hydrocephalus can also be caused by arachnoid cysts, which may occur anywhere in the brain. In children, they’re often located at the back of the brain (posterior fossa) and in the area of the third ventricle. These cysts are filled with CSF and lined with the arachnoid membrane (one of the three meningeal coverings). Some arachnoid cysts are self-contained, while others are connected with the ventricles or the subarachnoid space. The fluid trapped by the cysts may block the CSF pathways, producing hydrocephalus.

Dandy-Walker Syndrome

In Dandy-Walker syndrome, another cause of congenital hydrocephalus, the fourth ventricle becomes enlarged because its outlets are partly or completely closed, and part of the cerebellum fails to develop. Dandy-Walker syndrome may also be associated with abnormal development in other parts of the brain and sometimes leads to aqueductal stenosis. In some instances, two shunts are placed in the child’s ventricles — one in the lateral ventricle and another in the fourth ventricle to manage the hydrocephalus. Please see the Dandy-Walker Alliance website for further information.

Chiari Malformation

There are two types of Chiari malformation. Both types occur in the bottom of the brain stem where the brain and spinal cord join. The lowest portion of the brain is displaced and is lower than normal pushing down into the spinal column. Chiari II is explained under Neural Tube Defects. To learn more about Chiari I, please visit NeurosurgeryToday.org.

Intraventricular Hemorrhage

An intraventricular hemorrhage, which most frequently affects premature newborns, may cause an acquired form of hydrocephalus. When small blood vessels alongside the ventricular lining rupture, blood may block or scar the ventricles or plug the arachnoid villi, which allow CSF to be absorbed. When the CSF can’t be absorbed, hydrocephalus results.

Meningitis

Meningitis
is an inflammation of the membranes of the brain and spinal cord. Caused by a bacterial or (less frequently) viral infection, meningitis can scar the delicate membranes (meninges) that line the CSF pathway. An acquired form of hydrocephalus may develop if this scarring obstructs the flow of CSF as it passes through the narrow ventricles or over the surfaces of the brain in the subarachnoid space.

Head Injury

A head injury can damage the brain’s tissues, nerves, or blood vessels. Blood from ruptured vessels may enter the CSF pathway, causing inflammation. Sites of CSF absorption might then be blocked by scarred membranes (meninges) or by blood cells. The CSF flow is restricted, and hydrocephalus develops.

Brain Tumors

In children, brain tumors most commonly occur in the back of the brain (posterior fossa). As a tumor grows, it may fill or compress the fourth ventricle, blocking the flow of CSF and causing hydrocephalus. A tumor somewhere else in the brain might also block or compress the ventricular system. For more information, please see the National Brain Tumor Foundation website.

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6 thoughts on “Living a Rockin’ Life

  1. Just stopping in. Saw a tweet about your blog post. My son is 2.5 and has Hydrocephalus and Slit Ventricle Syndrome. He gets headaches, nausea, and vomiting also. I just finished writing a blog post about him and his condition too. Hoping to bring more awareness to others about Hydro.

    Good luck with your music and your Project Brain Drain.

    • Yes, awareness is needed, it’s frustrating that something so common isn’t known about! Thank you for your support and good luck with your son. I will be thinking of you guys! XX

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