Now, I highly doubt anyone will read this blog but I have nothing to do so I thought "Hey! Why don't I make a blog that no one will read!" If you can't already tell by the name of my blog, I suffer from Hydrocephalus.
I am a twin and we were born 2 months early and I suffered a brain bleed which caused me to develop a rare disease called Syringomyelia. This is when a fluid filled cyst, know as a syrinx, forms around the spinal cord. But that isn't what this blog is about. In addition to developing Syringomyelia I also developed a rare disease called Intercranial Hypertension and it affects roughly 1 in a hundred thousand people.
Intercranial hypertension(ih) is similar to hydrocephalus in that the fluid does not drain like it should. The major difference is that with ih the ventricles do not enlarge when the pressure in the brain rises which makes it very hard to diagnose.
I had a shunt placed at the age of 8. Since then I have had a total of 56 brain and spinal surgeries. Yes, I keep count! My problem is that my shunt over drains meaning too much fluid is being expelled which causes extremely bad headaches when I sit or stand for long periods of time. I'm basically bed ridden.
Most of these surgeries are to change out shunt valves or add something to try and help stop or lesson the amount of fluid being drained. I currently have a ventricular plueral shunt that drains the fluid from the ventricle in my brain into the lining around my lung which is then absorbed by the body. I have had almost (if not all) every shunt and valve there currently is. I was the second known person in the U.S to have a ventricular venous shunt. It drained the fluid into my venous system. I had it removed about 9 months later because it kept clotting which required surgery to fix it (this is the same reason the other person had his removed). I have also developed more diseases or conditions along the way. I have developed chiari, tethered cord, slit ventricle syndrome as well as hydrocephalus. I hope at least one person will follow my journey through surgeries I have so I can improve my daily life and maybe even help them with their own journey.
Updates: as of November 2015 I have had another surgery for a total of 57.
Update: On August 25th, 2017 I had my 58th surgery.
