Saturday, 19 October 2013

Spina Bifida and Hydrocephalus Awareness Week Day 1: How I Was Diagnosed With Hydrocephalus

Today sees the start of Spina Bifida and Hydrocephalus Awareness Week 2013. I'll write a post here each day with my experience of having hydrocephalus . As I have had hydrocephalus since birth, I feel it's best to start from the beginning. I'll take you back 31 years ago when I was born on 22 December 1981. I was born 3 months early and had a grade 4 brain hemhorrage on both sides of my head which revealed on a CT scan that I have hydrocephalus as well as spastic quadriplegia Cerebral Palsy.  The doctors suspected this due to the increase in my head size since my birth which indicated the level of CSF was out of control and my brain and skull were swelling badly. 

Hydrocephalus literally means "water on the brain" . The "water" is cerebrospinal fluid (CSF ) which bathes the brain and protects it . On the same scan the doctors saw I had Spina Bifida Occulta (SBO) which is the mildest form of Spina Bifida where the outer part of some of the vertebrae is not completely closed.The splits in the vertebrae are so small that the spinal cord does not protrude. The skin at the site of the lesion  be normal, or it may have some hair growing from it; there may be a dimple in the skin, or a bithmark. 

 The hydrocephalus I have means I can't regulate the level of CSF inside my brain or re absorb it.  My hydrocephalus was caused by my premature birth and it's thought also by the time I spent on a ventilator in the NICU. I needed life support from the minute I was born until two weeks after my birth. 

Tomorrow I'll blog about the treatment I've for hydrocephalus in my life so far. 

Until then, I wish you a very happy Spina Bifida And Hydrocephalus Awareness Week 

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