Years ago, there was no saving people with hydrocephalus, and there have only been treatment options since the 1960s in the UK. I feel really lucky to have been born in a country where there’s the knowledge of hydrocephalus and the resources for me to access specialist hospitals. When I came into the world in 1981 with my twin, the prognosis was grim, basically that we wouldn’t survive. I’ve said lots of times on this blog that she lost her battle. When I was two weeks old I underwent blood transfusions before emergency surgery to have my first shunt put in. The doctors and nurses had been measuring the size of my head and saw it was growing and growing as my brain swelled. There are different types of shunts for hydrocephalus. I have a VP shunt which goes from my brain to my abdomen. Shunts are permanent. There’s another type of shunt called a VA shunt which goes from the brain to the heart artery but my heart was much too weak when I was first operated on so they put a VP shunt in, and that’s the only type of shunt I’ve ever had, although I’ve had it replaced four times. There are types of hydrocephalus which don’t need shunts but I’ve needed one my whole life so far and will for the rest of my life.
Surgery for Spina Bifida happens when the person with the condition is still a baby and surgeons remove the spinal tumour and close the gap in the spine. Just because there’s surgery for these conditions doesn’t mean they’re cured once you’ve had it. That’s far from the truth and the physical scars and neurological complications for each are for life. The operations are major surgery and the risks are huge. Every time I was operated on, the recovery was difficult and slow. I pulled through and was luckily able to go back to school and finish my education. My family were unsure I’d pull through all the operations and ever have a chance at an education as I missed so much school due to being in and out of hospital so much.
As hydrocephalus is invisible, I carry a card called a “shunt alert card” everywhere I go. If I’m suddenly taken into hospital, the doctors will search for it and it has all the details of my shunt, where it was put in, surgeon’s and hospital details as well as my personal details. It alerts people to the fact I have a shunt and hydrocephalus as some hydrocephalus symptoms (eg loss of consciousness and even coma) can occur in people with hydrocephalus and mean they’re unable to explain about their hydrocephalus so the person with them has to. As I’m bilingual, I have this and a version translated into Spanish (which is just paper and not a proper card). There’s also the option for a shunt passport from Shine Charity which is a more substantial version of the card. It’s got space for recent CT scans and general hydrocephalus/ shunt information in languages frequently used throughout the world eg English Spanish and French to alert doctors and other medical staff. I don’t have one yet but I think it’s a great idea, especially for people who travel to areas where the knowledge of hydrocephalus and its treatment might not be so great.
People with many invisible but very serious health conditions including hydrocephalus buy Medic Alert jewellery which acts much like my shunt alert card.
I’m still deciding which jewellery I’d like but I think this is a better idea than the alert card as its more visible. I’m also up for anything that’s fashion-related! Today to represent hydrocephalus and Spina Bifida, I’m wearing my Kiko Makeup Milano Water Shadow in Yellow.
There’s a risk of infection/ blockage or shunt malfunction for me everyday with my shunt but I find its best to live life as best I can. I have headaches often and worry when I’m ill with a cold or the flu as some of the symptoms of the flu (dizziness vomiting) are also my hydrocephalus symptoms. I am grateful for every day my shunt keeps working.