People with hydrocephalus feel left in the dark
by Shana Lewis
42-year-old Shana Lewis, from London, had been running her own cake business and enjoying life as a loving mother and family woman when she was diagnosed with hydrocephalus.
The condition, caused by a build-up of fluid inside the skull that can increase pressure and subsequently damage the brain, left Shana with a brain injury that even today challenges her on a daily basis.
Having battled to overcome communication problems and relearned how to read and write following her brain injury, Shana writing her story below is possibly one of her greatest achievements yet...
"Hi, my name is Shana and I wanted to write this article about hydrocephalus and how it has affected me and my family. I want to inform you of the highs and lows of this condition and explain why, although it can be a very serious condition, don't panic.
"My hydrocephalus diagnosis came just after I had begun adjusting to the fact I have Chiari Malformation, a condition that involves the lower parts of the brain pushing downwards towards the spinal cord. Chiari Malformation itself can be painful and life-changing, so my first thought when I was told about the hydrocephalus was: 'and now this, really?!'
"Having being diagnosed with hydrocephalus, I was told I needed brain surgery and so, when I returned home from my doctor's appointment, I researched brain shunts and hydrocephalus.
"It wasn't so much the condition that worried me as I still didn't really understand what 'hydrocephalus' meant. It was more the idea of 'brain surgery' that scared me.
"I was thrown by those two words and I felt sick. They were going to cut open my head! It may sound a bit of a cliché but everything became a blur when I heard those words. I couldn't think straight and I didn't know who to call first. I just wanted to get home and lie down - my head hurt!
"Was brain surgery really my only option? I had been taking different medication for years for migraine headaches - surely one of these could do the job? With a bit more investigating? But no, in my case brain surgery was the only option for the possibility of a pain-free life.
"When I had to have my head shaved for the operation I felt butch and unfeminine. I had cut my hair short before but that was through choice and at the time it was very trendy. This time it was being completely shaved and felt very different. A feeling of sadness overwhelmed me. Quite frankly I didn't want to lose my hair.
"The doctors inserted a brain shunt, which is a piece of tubing that relieved pressure in my brain. Thankfully, the procedure was a success.
"Five months after the operation, my hair grew back just enough to attach hair extensions and I now feel prettier and more feminine than I've done in quite some time. However, the operation changed my perspective on hair in that I don't think of it as being important anymore. For me, what I now see as most important is being a Mum and having my faith.
"After my operation, I was faced with a long recovery process and I found that very little information was available on living with the daily challenges that often arise following hydrocephalus.
"Even with the shunt, brain injury has had a large impact on my life. As well as suffering from memory problems, my brain injury impacted upon my ability to read, write, and speak. Even now, I have daily seizures as a result of my brain injury.
"The biggest problem I found in the early stages is that not enough information was available.
"Life changes hugely after brain injury, but I now try to think that at least I have a life and I love to live it. I still struggle with seizures and communicating my meaning, but I do not allow it to define me because life is for living.
"Things that help me cope with the hydrocephalus include my faith, my children and being able to use what I've been through to help others affected realise there can be life after brain injury.
"My advice for someone going through something similar would be to make use of Headway support groups and access any legal entitlements. Also, don't panic and don't be afraid to ask for referrals to receive occupational therapy, physiotherapy, or speech and language therapists if you need help with speaking, reading or writing.
"Above all, accept help from those closest to you.
"Too often people living with a brain injury as a result of hydrocephalus feel that they are alone or left in the dark. I hope that my story will raise awareness of this particular cause of brain injury and offer reassurance to others similarly affected."