Tuesday, January 19, 2010

Living with Normal Pressure Hydrocephalus

I found out about my Hydrocephalus in May of last year. I finally had some answers as to why I had been having so many headaches and unbearable pain.

But in reality, all that finding out about my Hydrocephalus did, was leave me with more questions. Why wasn't this found sooner? Why, even though I would cry when I'd see the Dr, wasn't something done? How am I walking around with this, when most people have had several surgeries, and shunts installed. These are questions I still have today...and even my Neurologist and Neurosurgeon can't answer them.

My Drs tell me that I have had this my entire life...and have "compensated". I guess my larger sized head, isn't just because I have more brains than others. (ha ha ha) ;)

2009 gave me an overload of information, with very little answers, and it frustrates me so much, that there isn't a "fix" for me. But just like having no "fix" for Neurofibromatosis, I have just accepted that sometimes your struggles are set before you, so that you truly learn the value of life...and I have learned that.

I try my best to live everyday, the very best I can. I am trying to leave a legacy behind that is inspiring and positive. I don't want my children to remember their mommy as someone who was in pain and always complaining about what she has to deal with.

My life is a blessing--NF, Hydrocephalus and all that having that means!!


  1. I also have normal pressure hydroephalus and a larger head thatcompinsayed for it. I lived for 20 years with every night as I laid down I would get a headache.(the fluid builds up when you lay down... I finially demanded that I needed something anything to stop the pain... I great and wonderful neurosergon to my case infront of a board of neuro Dr.s some agreed on a shunt some did not think it was nesseary. Than God he put the shunt in. I never lived a normal life and had normal headaches in my entire life that I could remember. I am now a normal person with just the normal headache on occassion....It was my life saver...Now I am dealing with loosing my site, but I can deal with that at least I am not in pain.. Find someone who will help you.


  2. Thank you so much for posting your experiences. I do not have NF but my mother does. She just turned 76 years and has lived a full life. We believe she may have Hydrocephalus and after reading your post I am more convinced than ever she does. It would be a relief to finally have an answer to her headaches. I wish you both all the best.