Howdy Hydrocephalus

Understanding my unique gyroscope


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Give Me an E for ETV

There are two options to treat hydrocephalus – shunt placement or Endoscopic Third Ventriculostomy (ETV).  Neither treatment is full proof and can last a lifetime.  Neither treatment makes hydrocephalus go away.  It will always be a part of my life.

Because of my age and having obstructive hydrocephalus, I am a prime candidate for an ETV surgery instead of having a shunt put in my body. A dime-sized hole  will be made in my skull above my forehead (I always joke near old lobotomy locations).  A tiny camera is snaked through my brain until it reaches my third ventricle.  Images of my brain are shown on a monitor to help guide the neurosurgeon in making a small hole using a small knife or laser at the bottom of the third ventricle to allow the CSF to drain into a natural re-absorption pathway.

The benefits of having ETV surgery are no tubing and shunt in my body decreasing the chance of infection. There is less incision.  Less incisions = less pain.  There is also a lower complication rate than a shunt.  Shunts often have to be adjusted.  The surgery can be anywhere from 30 minutes to one hour.  It is estimated that 50% of the shunts fail within the first two years.  The success rate of an ETV surgery is 80%

The risk of anything going wrong is approximately 1%.  The most common is bleeding and fever. Where they are making is hole is near the hypothalamus so it is possible for short-term endocrine, memory, and diabetes issues.   The risk of a sudden ETV closure is 20-50% within five years of surgery.  It is not guaranteed that the ventricle size will decrease after intracranial pressure decreases after surgery. Positive outcomes may not be immediately noticeable because the CSF has to naturally drain unlike a shunt placement where success is noticed right away.

I have been told that my physical symptoms will go away and take up to two months to disappear.  The mental & cognitive functioning may take a bit longer.

A successful outcome means a shunt-free life, and the only downside is to monitor symptoms in case of a sudden closure.  I am confident that the ETV surgery will be problem free and I look forward to being back to my old self and if not my old self; discovering who the new me may be.

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No Zombies Allowed

Brains

I have two little boys.  W is six years old and D is four years old. Both have been fascinated by zombies since the zombie killer app for the tablet and being introduced to the Plants versus Zombies game at the library.  The boys recently got the Plants versus Zombies game for their DS systems.  The boys love that the zombies in the game say “Brains….brains….braiiiiiins!” The boys love to run around pretending to be zombies and shouting out “Brains…mmmm….Brains” especially now since they found two different zombie costumes at the store.

Yesterday, we had to run down to the library to return some DVDs before heading to Calgary.  As I was getting the boys in the car, they kept asking when we were picking up Nana & Papa.  I explained that we were heading the Strathmore tonight and pick up Nana & Papa the next day at the airport.  I then said that “Nana & Papa were coming to help out when Mommy has her brain surgery on Tuesday.”  We have been very open about my surgery, but both boys never asked any questions or said anything because they have been too excited to see their grandparents.  So out of the blue, W asks “Why am I having brains removed? Because if you have brains removed you will become a zombie.”  D then pipes up “If you become a zombie you will be kicked out of the house!”

I laughed and said that “I am not having any brains removed so I will not be a zombie.”  Both boys says “If you become a zombie; you will not allowed to come back. No zombies allowed!” So I guess I have been given my orders that on Tuesday, I am not to become a zombie!


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ultra sound – double edged sword

Ultrasound is a gift at letting you see your baby grow and progress during the pregnancy. Generally a parent-to-be is never concerned about the ultrasound because the pregnancy is normal. However, an ultrasound can also be a double-edged sword letting Doctor’s and parents know of potential concerns that most parents including me never even thought about.

To be told that your soon to be born child may have a potentially life threatening or debilitating issue can send parents into the black abyss of unknown and fear. It only takes a few moments of reading on parent discussion boards, Facebook pages to feel their fear and uncertainty of their future and the future of their families and soon to be born child.

Like a lot of news and televisions shows, the scary gloom and doom pitch is apparent on many of these sites. There are parents who tell their story of their children that have not survived and opted to terminate any male pregnancies after. There are plenty of stories sharing the severe mental and physical disabilities that their child has after they were born. This just adds more emotional fuel to the already tense situation. I don’t recommend reading any of the parent discussion boards or chat rooms, but instead turn to the medical sites or ask your team of medical professionals to provide information and answer your questions.

Basically there is no definite cause for Hydrocephalus but there is some hint that chromosomal and genetic abnormality that may be the cause use unless hydrocephalus developed due to a trauma or external factor such as an infection or spinal bifida.

I know that the first time I was told I had hydrocephalus, an image of a baby with a very head popped into my head. The large head or the rapid onset of a large head is definitely a tell tale sign of hydrocephalus in a newborn or infant.

There are two treatment options for newborns and infants: One is shunting where a tube is placed in the brain. This tube re-directs the CSF into the belly where it is re-absorbed. Endoscopic third ventriculostomy (ETV) can be done as well. Both have very good success at drain CSF and manage hydrocephalus. Babies can be shunted the day of birth or within a few days of being born. A child older than six months old may experience an ETV surgery instead.

Although the there is no cure, the treatment is early, it can be successful. A child may experience a large spectrum of motor or learning challenges but many children can show none of these challenges living a normal lifespan with normal intelligence. The only thing that is required with the treatment is the continued follow-up care to treat any infections, shunt blockages, ETV hole closure or shunt revisions.

The biggest thing is when you leave Children’s Hospital is to educate your GP and local hospital on the symptoms of infection and shunt malfunction. This is where you need to advocate for your child in an over protective parent way. If you suspect something is wrong – there most likely is something wrong.