Howdy Hydrocephalus

Understanding my unique gyroscope


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A Room with a View

The alarm went off at 4:15am.  I got out of bed and walked down the hill to the washroom to have a shower and use the special antibacterial soap on my scalp.  It is a chilly 8 degrees in the washroom as the windows are open, making my shower very brisk. I am not nervous. Everyone else around me is almost irrationally nervous/worried.  But I am calm.  I have no doubt that everything will go okay today. Being a great researcher, I have read both the good and the bad about the surgery.  I have faith in my neurosurgeon and surgical team.  I know deep down that I will be fixed.

The hospital building is dark and doesn’t look open. I am the only one at admitting where I am directed to day surgery.  I am given my new uniform of a fancy blue gown, housecoat, blue booties, and two more wristbands. Chris stays with me and we make jokes about the surgery. We will be moved from day surgery to the main hospital operating room near my surgery time.

At 7:20am Chris and I follow a porter to the Operating Room waiting area that is somewhere in the main hospital.  I have no idea where, because my glasses are off and I can not see a damn thing.  We are told to take a seat in the waiting area.  I put my glasses back so I can see.  We watch the waiting area fill up; all the doctor’s & nurses take their patients to their “theatres”.  Now I am the only person left.  I finally meet the resident and anaesthesiologist who say that they are getting the operating theatre ready.

I meet a nurse, give my glasses to Chris and kiss him goodbye.  I walk down the hallway to my door.  Inside there are at least six people.  I lie down on the table with my head in a brace, my arms are placed out like on a cross and I look up.  I see all the big lights that look like satellite dishes.  One of the lights has the nice camera that is used to guide the surgeon in my head.

The doctors all ask me how my summer was & I ask them how their summer was.  I am then given freezing in my arm for the IVs to go in. Then  a nurse puts a mask over my mouth and presses down.  I almost lose it, as I start to panic.  She says “take a deep breath, it is just oxygen” then the anaesthesiologist says “I have started to give you a cocktail”.  Yup he did, my shoulders, arms and chest begin to feel tingly.  Then he says “this will sting” and yes it does more than sting and I am out for the count.

I wake up thinking I am digging for dinosaur bones at DinosaurProvincialPark to find myself having three nurses and one of the surgeons looking at me.  I don’t have my glasses so they all look like fuzzy blobs. I am taken from recovery to the 11th floor acute neuro or brainiacs ward to my own  personal room with a view.

By noon, I eat lunch; by 3 I am walking around and doing good; The fog has been lifted and my vision on right side is better and  brain is clearer.  I thought I was an invincible machine but soon found my limitations short walks, short video watching and short reading and lots of sleeping.

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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!