My Diagnosis and Hydrocephalus Overview

At birth, I suffered a brain hemorrhage.  The bleeding was in the area of the brain that doctors could not get to safely.  Fortunately for me it clotted on its own.  I was told all my life that the blood clot was what caused hydrocephalus.  A couple years ago my current neurosurgeon told me that I have hydrocephalus due to aqueductal stenosis.  At the time I looked at him like he was crazy because my family had told me that a blood clot caused it and none of my other neurosurgeons ever told me different. 

Recently my husband and I were looking through my old medical records.  My pediatric neurosurgeon wrote on a report that I had a brain hemorrhage at two days of age. I did have a blood clot but that's not what caused the hydrocephalus.  Aqueductal stenosis did.  My pediatric neurosurgeon also noted that the blood clot would go away on it's own in a short amount of time.  My current neurosurgeon has been telling me that there hasn't been a blood clot in my brain for all the years he has known me. Since I don't know too much about acqueductal stenosis I can't get into that too much now, but I can explain what hydrocephalus is.

Hydrocephalus is the accumulation of cerebrospinal fluid (CSF) in the brain.  It is a life threatening medical condition, not a disease.  A mechanical device called a shunt is implanted into the ventricles of the brain or the lumbar spine to divert the CSF into another location of the body where it is reabsorbed.  The shunt consists of a valve and two catheters.  The valve either has a fixed setting or can be programmed with a magnet.

A shunt is a control for hydrocephalus, not a cure.  There is no cure as there are so many causes for it.  Shunts only have a 50% success rate.  They often need to be revised which could mean a lifetime of brain surgeries for the patient.

Signs of a shunt failure include but are not limited to severe headaches, nausea, vomiting, changes in vision, lethargy, confusion, dizziness, poor performance in school and/or work, and personality changes.  Symptoms are different for everyone. 


If there is a problem with the shunt, the symptoms will not go away until the problem is resolved.  The patient will not feel better until a revision is performed.


Many hydrocephalus patients have memory loss and cognitive issues.  Some may suffer from depression from dealing with a chronic condition.  Most have to deal with pain on a daily basis.

I had my first shunt implanted when I was almost two months old and I have documentation to prove it.  My doctor had to wait until I recovered from a cold that I came down with in the hospital. My doctor felt that a VP (Ventricularperitoneal ) shunt would be the best fit for me.  The distal catheter ends in the peritoneal cavity with a VP shunt.  The shunt was implanted with no complications.  Unfortunately the brain hemorrhage and pressure from the hydrocephalus damaged my eye muscles.  I was cross eyed until the age of one when they could perform my first eye surgery.  My eyes still wander to this day and I only see out of one eye at a time.  Since I was cross eyed for so long my brain focused on the stronger eye, which is the left, and shut the right one off.  I have no depth perception whatsoever.

Since implanting that first shunt I have had many revisions and have suffered many side effects from multiple brain surgeries.  I have anxiety about being in large groups, can't handle loud noises anymore, and have dealt with depression on and off.  I have short term memory loss, very little fine motor skills, balance issues and difficulty walking from a recent brain bleed.  I want to share my journey with hydrocephalus to educate people and maybe help someone who has it.  I will be very open about this crazy journey.  Hope you enjoy!