Pity party
On December 19, 2011 I was 23. I had just started a new job, was in a great relationship with my soul mate Patrick, had just lost 60lbs on a serious health kick. I enjoyed running, hiking, kayaking, we raced in a bunch of 5k/10k's, not competitively, but for fun. Spent a lot of time with friends and family...I had a very active life. I was thriving, as a normal HEALTHY 23 yr old should.
On December 19, 2011 I was 23. At my new job I worked at a desk with a computer. I felt strange, looked up at the clock and I noticed the 3 on the clock was missing. I blinked a few times to see if it would go away but it didn't. In fact, I still couldn't see the 3 and now I was starting to feel woozy & faint. I knew I had never felt this feeling before. It was hard to walk. The walls of the office looked like they were stretching. I felt like I was on shrooms or something...never having done any drugs I knew something was probably wrong. So I got up and went to a "quiet room" we have in the office for people to decompress after stressful calls or a long day. I stood in the dark room and called Patrick. We went to urgent care, who told us to go to the ER. ER does blood work and a CT and tells me I have a build up of ICP. I need to be admitted. I've never even BEEN to a hospital before, now I'm a patient who's waiting for a neurosurgeon to tell me what's going on and what the plan is. I have hydrocephalus (adult onset). It means I have excess fluid built up around my brain. it was pushing on my optic nerve and this was the cause of the vision problems earlier.
We decided on the ETV (endoscopic third ventriculostomy) as it sounded the least invasive and of course no shunt. That failed within a year. 10 months into it I was having visions issues, vomiting, balance problems. October 2012 we put in my first VP shunt and from there it's been nothing by problems. I've had over 11 shunts and 21 different surgeries. I had a seriously infection with a VPL shunt (one that goes in the lung cavity) that put me a coma for 3 days. I've developed epilepsy, take 6 pills a day (that's the lowest it's been in a LONG time) and live in constant pain. I have headaches every day...every. single. day.
I've had to stop working because of all of this. I tried going back to work a handful of times but just couldn't keep up when I was there. Plus, a company really doesn't like when you need to have surgery every 2-3 months and the have a recovery of at least 3 weeks.
On December 19, 2011 I was 23. I am now 27, applying for social security disability, living with pain and anxiety on a daily bases. Hydrocephalus has ruined my life.
I understand this is very depressing, I have a lot more going for me other than my hydrocephalus woes. It is how I feel in my darkest moments. So I'm going to post it anyway.
On December 19, 2011 I was 23. At my new job I worked at a desk with a computer. I felt strange, looked up at the clock and I noticed the 3 on the clock was missing. I blinked a few times to see if it would go away but it didn't. In fact, I still couldn't see the 3 and now I was starting to feel woozy & faint. I knew I had never felt this feeling before. It was hard to walk. The walls of the office looked like they were stretching. I felt like I was on shrooms or something...never having done any drugs I knew something was probably wrong. So I got up and went to a "quiet room" we have in the office for people to decompress after stressful calls or a long day. I stood in the dark room and called Patrick. We went to urgent care, who told us to go to the ER. ER does blood work and a CT and tells me I have a build up of ICP. I need to be admitted. I've never even BEEN to a hospital before, now I'm a patient who's waiting for a neurosurgeon to tell me what's going on and what the plan is. I have hydrocephalus (adult onset). It means I have excess fluid built up around my brain. it was pushing on my optic nerve and this was the cause of the vision problems earlier.
We decided on the ETV (endoscopic third ventriculostomy) as it sounded the least invasive and of course no shunt. That failed within a year. 10 months into it I was having visions issues, vomiting, balance problems. October 2012 we put in my first VP shunt and from there it's been nothing by problems. I've had over 11 shunts and 21 different surgeries. I had a seriously infection with a VPL shunt (one that goes in the lung cavity) that put me a coma for 3 days. I've developed epilepsy, take 6 pills a day (that's the lowest it's been in a LONG time) and live in constant pain. I have headaches every day...every. single. day.
I've had to stop working because of all of this. I tried going back to work a handful of times but just couldn't keep up when I was there. Plus, a company really doesn't like when you need to have surgery every 2-3 months and the have a recovery of at least 3 weeks.
On December 19, 2011 I was 23. I am now 27, applying for social security disability, living with pain and anxiety on a daily bases. Hydrocephalus has ruined my life.
I understand this is very depressing, I have a lot more going for me other than my hydrocephalus woes. It is how I feel in my darkest moments. So I'm going to post it anyway.
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