Slit Ventricle Syndrome

Slit ventricle syndrome or SVS is a condition where the ventricles of the brain become non-pliable and look like slits.  This condition usually occurs in children and life long shunt dependent people.  SVS is actually rare, difficult to diagnose and treat.


This condition can be extremely dangerous.  CSF is a cushion for the brain.  When there is not enough fluid supporting the brain, damage can be done.  Also when a person is over-draining their pressure runs in the negative.  The slit ventricles make it riskier for a physician to do brain surgery.


Just because scans reveal slit ventricles does not indicate that a person has SVS.  They have to be symptomatic.  Symptoms usually include chronic or intermittent positional headaches, lethargy, vomiting, vision changes and dizziness.


Slit ventricles also DOES NOT mean that a shunt is working properly.  The ventricular catheter could be blocked barely allowing fluid to flow through.  It is crucial that shunt malfunction is ruled out when a CT scan or MRI reveals slit ventricles. 


If a person is diagnosed with SVS, there are some treatment options.  An anti-siphoning device can be added to the shunt to avoid over-drainage whenever a person stands up. 


ETV or third ventriculostomy has been known to treat people with SVS so they are no longer shunt dependent.  ETV is a procedure in which a hole is opened in the brain.   Unfortunately the ventricles of the brain have to be enlarged to do this procedure.  A physician can temporarily block the flow of the shunt by externalizing a part of it to see if the ventricles will open up. 


Patients with programmable valves can have their setting changed to increase pressure.  Patients with fixed valves can have a higher pressure valve put in.


Migraine medications and subtemporal decompression are two other options for treatment.


Now that you know a little more about slit ventricle syndrome, I want to share my experience with it.  We first noticed my ventricles were slits when I was 20 years old but wasn't diagnosed with SVS until I was 25.  Back then my surgeons should have realized something was wrong and tried to treat it.  But I was constantly being sent home from the emergency room saying that my shunt was fine because my ventricles were so small.  That is not true at all.  Since they didn't get control of this seventeen years ago, it has taken over my life.  I am still struggling to find a treatment that will work and I have one collapsed ventricle in my brain.


I do have an anti-siphoning device on my shunt but I am not a candidate for a programmable valve.  We have tried migraine medications but that didn't work.  My current neurosurgeon has externalized my shunt twice and even though I had increased intracranial pressure during the externalization, my ventricles did not change at all since they are so rigid. 


Symptoms of over-drainage for me are increased headaches when I stand or sit up, sometimes lethargy, blurry vision, dizziness, and an eye twitch.  Don't ask me why my eye twitches but it does.


Whenever I am experiencing over-drainage symptoms, I have to lay flat and increase caffeine to open up the blood vessels in the brain.  But as I have mentioned in a previous post I had pancreatitis several months ago.  As I have been increasing caffeine, I noticed that my pancreatic pain was returning.  I have decreased caffeine dramatically in the last day and a half and the pain in my head is horrendous.  But I am trying to avoid getting chronic pancreatitis or pancreatic cancer so I will have to deal with it until I go back into surgery.


The next option is to put in a higher pressure valve.  This is the highest pressure available though so if this doesn't work I am not sure what they will do.  My doctor did briefly discuss subtemporal decompression with me but I am not to keen on having part of my skull removed.  That will be a last resort.


I've had seven brain surgeries in two years and most of them were due to issues with over-drainage.  One was due to an infection and several due to a faulty valve.  I am really hoping the higher pressure valve works and I can get a break from this madness.  I just want to be able to enjoy taking a walk again and not be in agonizing pain when I do it.  The moral of this post is if you start seeing smaller ventricles in your scans over time do not take it lightly.  You don't want to get SVS.