Hi, my name is Karen. I have hydrocephalus. I have had it since birth but was not diagnosed until I was 8 years old.I also have a genetic disease called neurofibromatosis type 1. Ok, as I said I was born with my conditions. My parents say I was what was considered a normal birth and was developing just like any other child. Except for having an abnormally large head, (which the doctor said was nothing) And the cafe au lait spots from my neurofibromatosis the MD said was just birthmarks.

I can remember the horrible migraine headaches as early as 3 years old and being sick all the time. The pediatrician told my parents to give me baby aspirin and send me home. I'd be "alright". by the time I was 6 I was having difficulty walking. Then by age 7 my coordination skills were declining and I had difficulty handling daily tasks that a 7 year old should be able to do. My handwriting deteriorated and my grades in school were slipping. I started walking on my tiptoes and became very withdrawn. On to 3rd grade, My headaches had intensified ad I missed alot of school with being sick. I started to have problems with double vision. My parents took me to an eye doctor who finally thought something was wrong and referred me to different pediatrician. From there I was sent to a neurologist in a bigger city. I was admitted to the hospital in Rochester, NY with both diagnoses. I had my first shunt surgery on June 8 1973. Other then being held back in school for a year and not being able to play contact sports I seems to be doing well.

Then in January 1976 I had a setback. The first shunt became infected by a flu virus and I was in a semi-coma. Rushed back to the hospital and had a new shunt put in. Now 26 years later. On May 24, 2002 I had my first setback in a long time. The old shunt had malfunctioned and again I had to have emergency surgery to replace the shunt. I had been having awful headaches over the past year but I passed them off as stress and working too much overtime. Being I hadn't had a problem with the shunt in so long I just ignored the signs I guess. The week that this all happened I have no memory of until 2 days after my operation. There was so much CSF build up on my brain and the neurosurgeon said I almost died. The shunt malfunction this time was a result of tissue growing over the tubing and causing a blockage. I had an MRI about 6 months before this and according to the surgeon, My neurologist missed the fact there was a problem brewing with my shunt then even compared to the one I had done in the ER the night of surgery. Makes me a bit angry thinking this could have been taken care of back then and not under the emergency trauma that I went thru. But I cant look back.

Its August 3rd now and I'm back to work finally. I feel so much better. I've been headache free and no more problems. Even my temporary bald head is growing hair back! I'm told by the teens in my church how I fit right in with "the look". Makes this almost 38 year old feel young again LOL! I'm lucky with my neurofibromatosis. Mostly I just have the cafe au lait spots. I did have 2 tumor growths on my eyelids removed a few years ago without complication. I have an NF tumor on my spine now but my new neurologist is just watching it for now. Well, that's my story. I realize it isn't as traumatic as some of the others I've read here. I consider my own situation very fortunate. Many Doctors have told me because of the length of time I was undiagnosed I could be in a lot different situation. I honestly believe God allowed this to happen to me so that I could be a support to others with similar and worse conditions. I work in a nursing home as a healthcare aide and when I'm not doing that I volunteer for the local children's miracle network and for muscular dystrophy association.

Thru all this my greatest supports have been my husband, James. This last ordeal for me was his first time. Even though we've talked about it's possibilities, it was a shock and unprepared for. My parents who have been thru this with me my entire life have been a blessing in helping him understand and guided him thru the decision making. My brothers who never let me just sit. They have encouraged me to be all I can and shoot for the stars in everything I do. I'm also in progress of starting a local support group in the local hospital for patients and loved ones affected by neurological conditions. There is none currently and I see the need to start one. If anyone has suggestions or advise on this I'd love to hear from you. I'd love to share more in emails or chat. I see I've gotten long winded here now. Hope I haven't bored anyone. My heart and prayers go out to all of you.

God Bless ~ Karen