About Me
So, I've never written a blog before but I thought I would start by introducing myself and sharing my story.
My name is Sarah Renehan and I have hydrocephalus. I was born with the condition and I had my first operation when I was 4 weeks old. I was born 4 weeks premature, at a tiny 4 pound 5 ounces. Mum and Dad's little bundle of joy. I can only imagine what they had to go through emotionally when they found out I was sick. But anyway, my first operation went well and after that I went on to grow up into an energetic little girl, payed all the sports under the sun (Apart from football, much to my disappointment), got into music, and did well at school....
Until I was 7 years old. I don't remember a whole lot about this time but I do remember one day at school, I had a terrible headache and went to the sick room. When I lay down on the bed I started looking around and everything went blurry. Now at this stage I didn't really have much of an understanding about my condition, I just knew that I had a pump in my brain because the water in there wouldn’t come out without it. So, I didn't say anything to Mum and Dad I just let it go. Cos everyone gets headaches, right? A little bit further down the track still getting headaches, I went to get up one morning and had my whole world spin around so fast that I fell back on to my bed. Still feeling really unwell I think I must have told Mum and Dad because we ended up in Adelaide seeing my neuro surgeon. Now, I have never gotten car sick in my life, until that day, as another one of the symptoms of a blocked shunt appeared. They did CT scans of my brain and it showed that there was a blockage. I also ended up having a needle in the head. I think that was to find out where the blockage was.
So this time after surgery, (the op had gone really well) I unfortunately had an allergic reaction to the anaesthetic. I spent a week being sick. (Not fun with a cut on your stomach) I spent a bit more time in the hospital than what I was supposed to. While I was there though, I had the pleasure to meet a young boy a few years older than me that had the same condition. Daniel had had something like 9 operations in 12 months. From the shunt being blocked, getting infected, or just not working. And there he was, happy and optimistic, he would invite me over and we would play Nintendo and just talk. His attitude still inspires me today and always reminds me that even though I have had 5 operations myself, in the long run, that's nothing and I am very lucky to be here and be living normally.
So when I was 16, I had another operation, this time the tubing in my neck was too large and it was irritating and getting really sore, so they replaced the tube with a narrower one. That operation went without a problem. Thank goodness!
So, I am now 24, doing great, working hard and playing in a band and start to get headaches. Not continuous, just in short bursts. So I go see a GP. "Drink more water" he tells me. "You're dehydrated" So I go home, start sculling a whole heap of water and the headaches go away for a while..... Then they come back, I go and get my neck and back massaged, the headaches go away for a while. This went on for months. So I went and saw a doctor again, this time he says, it's probably a sinus infection but I will book you in for a CT anyway. I went and had the scan and go see the doc again and get told, "There was a slight difference between this scan and previous scans but I don't think it's anything to worry about." He also told me to go and get my eyes checked as a couple of days before I noticed sudden blind spots in both of my eyes. So I went to see the eye specialist and as soon as he looks in to my eyes, he notices a build up of pressure behind them. I tell him that I have hydrocephalus and he rings the doctor’s surgery straight away and gets me in to see another doctor that day explaining the situation. When I go see the doctor he sends me to the hospital straight away and organises for me to be flown to Adelaide by air ambulance. All this time I’m thinking to myself, “great, the first time I’m going on a plane and it’s to the hospital!” When we get to the hospital and I see a member of the neurology surgical team, she takes one look at my CT scan and says, “Yup, it’s blocked.” 3 days later I have the operation to replace the catheter that goes into the brain. This time the operation does not go so well, unfortunately when placing the new catheter into the brain a nerve is accidently touched and the left side of my body is affected. When I come out of the anaesthetic, my left arm and leg movement is limited and the left side of my face is droopy. I couldn’t even hold a pen with my left hand. I don’t think I’ve ever been that scared. The worst part was that they didn’t know whether it would get better. Over the next couple of days however, I worked hard to get the movement back and made a lot of progress. I didn’t have the co-ordination that I had before but I was getting there so at the end of the week I got to come home. I was home for 3 days.....
The Sunday after I got home, I was sitting on the couch watching TV when I suddenly felt something drip on my shoulder. I felt the scar on my head and it was wet. I didn’t know what to think. Was my scar infected? I didn’t think so as the fluid that was coming out was clear. The next day it had not stopped dripping so my Mum and I went to the hospital to see the doctor on call. When we saw the doctor he rang the surgeon at the Royal Adelaide Hospital straight away. And then there was my second time on a plane, once again to go to the hospital. When we got to the hospital and saw the doctor we were informed that the previous operation had not worked and the shunt was still not working.
The only reason that I was not having the symptoms any more was because the cerebral fluid was escaping through my staples that had been used to close the wound. I had another operation the next day. This time however they put in a whole new system. The operation was a success no nerve hitting and the catheter placed perfectly in to the ventricle to drain the fluid. It’s been 5 weeks since my last operation and although my left side is not perfect it’s almost better. I still also have blind spots in my vision but we are hoping that gets better over the next couple of months.
I’m am one of the lucky ones, I’ve spoken to people that have had many operations and I always think back to Daniel who had the 9 operations in 12 months and wonder how he is now. There are those who end up brain damaged, have spina bifida as well as hydrocephalus and those that do not survive. So I’ve told my story with hope that I can connect with people, that they can share my story and that we can all work together to make a difference. To tell the world that this condition exists and that we need to do something about it, to improve the lives of those that weren’t as fortunate as me. Thanks for listening. J
P.S I promise my next blog will not be this long!
Sarah XXX
