Gabriel's Life sticker Campaign

Help us get a Gabriel’s Life Sticker on the set of “Grey’s Anatomy.”
Donate to Gabriel’s Life Sticker Campaign (www.gabrielslife.org) for $12. We will send you two stickers. Keep one and give the other to your neurosurgeon, take a picture of them with the sticker and email it Gabriel’s Life, we will post it to our site. A third sticker will be sent to a staff or cast member of ABC’s “Grey’s Anatomy” along with a copy of your hydrocephalus story as it is posted on the Gabriel’s Life site.
Why are we doing this?
We want more awareness of hydrocephalus within our community and the general public. This campaign will create opportunities for awareness on local and national levels and encourage the hydrocephalus community to think about solving the challenges of hydrocephalus in a new way.

How can you help?

Buy the stickers
Share your story
Ask your friends to buy stickers and be ambassadors for our campaign
If you have Patrick Dempsey’s phone number, please pass it along!

Follow updates on this campaign on Facebook
Follow updates on Twitter
Why does it make sense for a ABC and “Grey’s Anatomy” to care about hydrocephalus? Why should a Gabriel’s Life sticker appear on a prime time hospital television series?
The main character on ABC’s “Grey’s Anatomy” is a neurosurgeon, Derrick Shepherd, played by Patrick Dempsey. Because of the frequent failure of shunts (the dominant treatment for hydrocephalus) and the need for them to be revised, surgeries related to hydrocephalus and shunts are considered the “bread and butter” of neurosurgery. Because the Dempsey character would be very familiar with hydrocephalus (hydrocephalus has been included in two episodes) it makes sense that he would also know and support the mission on Gabriel’s Life. He would have and display a Gabriel’s Life sticker, on his locker, or laptop or desk. We are not asking that a storyline be created around Gabriel’s Life, we simply want the logo to be treated like a product placement on the set.

things are changing every day

I'm taking advice of a friend about the treadmill. I'm getting on the treadmill 2 or 3 times a day for a few minutes at a time to help build up my endurance.

To day I had a dentist appointment and usually after riding in a car I have head rushes. Today they were not as bad. I hope this means I'm getting use to having fluid around my brain like most people are suppose to.

I may even try swimming in a day or so. I would love to get back into my normal activities.

Had my recheck with Dr. M

I got to tell him that I was no longer having the fetal position headaches. Which was our goal and he was very pleased. I told him about the head rushes I have when I stand and he thinks I'm just very sensitive to not having any spinal fluid to cushion in so long I just have to adjust.

He wants me to increase my activity slowly. I can start back swimming and water exercise. And I am to see him again in 6 months.

Today is a really different day

Yesterday I had a doctors appointment with my rehabilitation Dr in South Carolina. I really dreaded getting up this morning because usually riding in the car on long trips really messes with my headache.

I planned on a real bad bruised headache and just constant pain all day. But I'm not hurting too bad right now. I'm really surprised. I have my usual pain but nothing extreme. Maybe this surgery is helping some.

I am pretty tired though but I just had surgery a little over 2 weeks ago. I feel encouraged by not having a crazy fetal position headache today.

Full moon causes hydro headache

Its a scientific fact that during a full moon the gravity of the earth is stronger and pulls more on the brain making fluid float to the top of the head in normal people. It can often cause mood changes and headaches.

A full moon more so effect a person with hydro since they are extra sensitive to atmosphere changes.

Last night there was a full moon so I have had a major headache all day. I'm sure it doesn't help that it has been raining all day either.

Also with gravity being stronger my balance has been off and a bit of a klutz. My friend was here with me wondering if I had turned into a magnet hitting everything. Start noticing when you have an extra clumsy day check to see if its a full moon.

Insomnia is a common side effect of hydrocephalus

Sleeping problems are a very common problem with hydrocephalus. Ever since I can remember I have had problems sleeping even before I knew what my condition was called.

After surgery I had been sleeping a lot as I usually do until I get the anesthesia out of my system.

But now that I've been sleeping like crazy I've stopped wanting to sleep again. The past 2 nights have been all night wide awake nights.

This is an all the time struggle with trying to sleep. I've never understood these people that could just lay down and hit the pillow and go to sleep.

Thank you Michelle

I just wanted to give a shout out to The adventures of super mom for blinging up my blog. Check her out she does great work.

Bald is beautiful

At least that is what they keep telling me. I've not been wearing my bald head with too much pride because I just don't feel real feminine. Actually I feel like a little boy.

I've been wearing hats and a wig and they are really hot in this weather.

Yesterday I gave up and went to see my hair dresser Wendy and had the bangs shaved I was leaving to wear hanging from under the caps to look like I had hair just a "Hat day"

So a really cool thing happened. I went to lunch and saw a waitress that did not know about my illness my bald head and scars opened up the conversation about hydrocephalus.

On the way out she was asking more questions I saw out of the corner of my eye a man listening and looking at my scars. I'm thinking he will probably ask the waitress what was wrong and will go home and google our condition.

He was a new dad with a baby and his wife. I feel like maybe showing my scars may give others a reason to ask and learn about hydro.

Another Cause of Hydrocephalus is agenesis of the corpus collosoum

Honestly I don't know alot abot this condition. I had a reader mention that it was not part of my last post so I thought I would do a seperate post. I googled wanting to give some information on this condition and how this occures.


Agenesis of Corpus Callosum

Synonyms ACC Corpus Callosum, Agenesis Disorder Subdivisions Autosomal Recessive Inheritance ACC (e.g. Andermann syndrome) X-Linked Dominant Inheritance ACC (e.g. ARX) Acquired Form of ACC Aicardi Syndrome General Discussion Agenesis of corpus callosum (ACC) is a rare disorder that is present at birth (congenital). It is characterized by a partial or complete absence (agenesis) of an area of the brain that connects the two cerebral hemispheres. This part of the brain is normally composed of transverse fibers. The cause of agenesis of corpus callosum is usually not known, but it can be inherited as either an autosomal recessive trait or an X-linked dominant trait. It can also be caused by an infection or injury during the twelfth to the twenty-second week of pregnancy (intrauterine) leading to developmental disturbance of the fetal brain. Intrauterine exposure to alcohol (Fetal alcohol syndrome) can also result in ACC. In some cases mental retardation may result, but intelligence may be only

Diagnoses and systems from the American hydrocephalus Association

Diagnosis
If you think that you or someone you care about may have hydrocephalus, we recommend you learn about the symptoms and diagnostic tests for this condition. We also encourage you to trust your instincts. If you notice changes or have an intuitive feeling that something is not right with the person you are concerned about, act on that feeling and seek medical attention.

Only a medical doctor can make a diagnosis of hydrocephalus. The information here is intended to help you understand and navigate through the process of seeking medical advice. In children, it is often a pediatrician who first suspects hydrocephalus. A pediatric neurosurgeon will typically make the final diagnosis. In adults, hydrocephalus is often diagnosed by a neurologist working with a neurosurgeon.

If you have already received a diagnosis, the information below will help you make sense of the classifications and causes of hydrocephalus.


Symptoms and Diagnostic TestsSymptoms 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

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.

■PreNatal
■Infants, Children and Teenagers
■Adults Diagnosed in Young and Middle Age
■Older Adults with Normal Pressure Hydrocephalus (NPH)

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Classifications & CausesDoctors 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.


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

Congenital■Aqueductal stenosis
■Neural tube defect
■Arachnoid cysts
■Dandy-Walker syndrome
■Chiari malformation
Acquired■Intraventricular hemorrhage
■Meningitis
■Head injury
■Brain tumor


Aqueductal Stenosis
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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

National Hydrocephalus Month

September is nation hydrocephalus month. The entire month is dedicated to teaching and spreading the word about hydrocephalus. This is also the reason Michelle helped me set up this blog.