My name is Kayla, I am twenty-one and a half and live close to Portland, Oregon. I was born with Myelomeningocele and Hydrocephalus. My twin brother was born with Spina Bifida Occulta, but he's never had any symptoms except for pain in his back before he had a spinal untethering at eighteen. My oldest brother has no symptoms at all, but he does have a dark spot at the base of his spine that doctors say must have closed before he was born.
I have had 40+ surgeries (I honestly lost count) on my feet (I have been able to walk fine without aid but they twist every now and then and need to be straightened out), back (spinal cord untethers, mostly), neck (Charai malformation) and shunt (I had the connector buried into my ventricle in February because my skin was thinning and it was coming out through my head. I'm going in for another next week, my shunt is broken in two places, it was replaced once before in 2002), and I had a neo-bladder created for me at eight years old that has been revised several times since then because of malfunctions. There have also been a number of non-related Spina Bifida surgeries, but I need not go into those.
The major concern right now is that the neo-bladder that was created for me has started to reflux my urine back into my kidneys, and I get a nasty infection called Pyelonephritis (it's really obnoxious that LJ recognizes these terms as misspellings, haha). I am on constant courses of Cipro and because of my overuse of it I am starting to become resistant to it. I've found that Levaquin also helps somewhat before it reaches Pyelo status, but it's an antibiotic that cannot be given on a constant basis since you can become resistant to it so quickly. Basically, my kidneys and bladder are really bad and I'm running out of options. Does anyone have experience with this? Have you found an antibiotic that you can take for prevention that works as well as Cipro? Other options? My urologist considered revising the neo-bladder so it drains all the time in a urostomy bag, but if possible I'd really like to avoid that.
So, I just wanted to introduce myself and say hello. In all my years of using the internet and LJ I have never been a part of a Spina Bifida community. I have never talked about it much and honestly, I think I just wanted to escape it because it's such a big part of my life that I figured why talk about it online too? But it gets lonely to have no one that really understands, even when you have supportive family and friends. So I hope to meet some people and make some friendships with the only people who can truly understand what it's like. So, please leave comments and introduce yourselves.