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joanna

My days of hydrocephalus were the darkest of times. Being a person that has always been very active, this disease to me was my "hell on earth" as I have often described it to others for a lack of words to describe the vague but life altering symptoms that I experienced.

I was diagnosed with NPH in 2005. Two years prior to my diagnosis, I was 35 and pregnant with our first daughter. My husband and I remodeled our 2000sq ft home. I am a person that never sits down, I have a project at all times. We then moved to Las Vegas for our jobs and I became pregnant with our second daughter in 2005 at which time I noticed that things were just not right. I am a nurse and was working in an ICU unit in Las Vegas on night shift. I was extremely tired and just could not organize any aspect of my life, I felt like I was in a "fog". My ob/gyn was told of my difficulties but it all kept being chalked up to being pregnant. They placed me on anti- depressants and despite my tears and my trying to explain that something was wrong without my ability to explain what was wrong nobody knew what to do with my vague complaints, I did not even know what was wrong... Looking back things that I recall... sitting on the bed with my daughter I would have to fight not to fall backwards, it was almost as if someone had their hands on my shoulders and were ever so slightly placing pressure on me until I eventually would fall backwards, I could not keep myself sitting upright. I could not complete tasks. My husband would request me to do something during the day and I would either never recall that he asked or I would not be able to complete the tasks due to lack of energy or the task seemed so overwhelming I would avoid it. Overwhelming to me was looking up a phone number and making a phone call to request information... everything was a major task during this time. I eventually started having incontinence, at 36 I had to wear depends because I would not make it to the bathroom and I would not wake up at night when I needed to urinate. Making my children something to eat, bathing them, getting them dressed, getting myself dressed-all these tasks seemed more difficult to me then climbing Mount Everest.

Finally one day I got a severe headache and took a nap- my husband came home to find me in the bed and both kids uncared for; I have no idea how long I had been asleep. He then called my best friend, who is also a nurse, and told her to come over that very instant because he was at the end of his rope. Looking back now I am not sure how he dealt with it as long as he did. She came over and insisted that I go to the emergency room. Not having any pain and not knowing how really sick I was it was quite a feat to get me to go to the ER, especially being a nurse, but she got me to go. With her explaining to the doctor what had been going on he did a CT and at that time I was diagnosed with hydrocephalus. I saw a neurosurgeon the next day, Friday. He called his friend at Shands hospital in Gainesville and that physician called me that afternoon and told me to pack and get there the next day. We arrived on Saturday, had surgery on Sunday and came home Monday. I was very blessed because they used a new procedure called a Third Ventriculostomy. I knew the minute I awoke from surgery that I was better. I have no shunt and so far I have had no problems since. My memory is coming back more and more weekly and I actually almost feel "back to normal"- whatever that is in life :)

I felt compelled to write this because when people ask me to "tell them what symptoms I had" I cannot even begin to speak without my eyes filling with tears. I cannot explain that time in my life any different than the above words of "my hell on earth"- The symptoms occurred so gradually that although I knew something was wrong I was too sick to see them.

Maybe if we all keep writing what we can about our experiences with hydrocephalus it will be easier and easier for others to figure out what they are going through and perhaps get diagnosed earlier. I would not want anyone to go through what I experienced because had it not been for my family and my closeness to God I may have made a very bad decision during that time because I knew that I could not and did not want to live like I felt-it was awful!!