I was diagnosed with Hydrocephalus in 2001. I was scared beyond belief, thinking it was a fatal diagnosis. I went into an emotional tailspin for a week, thinking thr worst. I did not understand what was going on, and was totally unprepared for what was to happen. I had bad headaches and blurred vision for months, but I was told it was either stress or high blood pressure(which I have). eventually, after one trip to Emergency, a doctor took the initiative to request a catscan. It was there that I was told what was causing me the headaches and blurred vision. I was diagnosed in August 2001, and had my operation in Sudbury in Nov 2001. My dad and wife came with me, and the rest of my family eventually followed. I was told what the operation involved, but was still not fully prepared for what happened after wards. There was so much pain, and I underestimated the condition I would be after the operation. I was in the hospital 3 days I think, and it felt like a month. Eventually I was let go, but not after some troube trying to get my doctor to sign me out. The ride home was awful, as I had to sit up the whole time in the back seat, without being able to lay down. To top it iff, I had to wear a toque over my eyes to cover oncoming headlights as it caused me great pain to see the light. When I arrived home, I could not walk at all, and had to crawl around my apartment. It took my family doctor a few days to prescribe some pain medication for me, after my mom called and yelled at the nurse. My wife did everything for me, except bathroom duties(which I refused to let anyone else do) I could stand for a minute or two, but it was painful. I think it took me a month to be able to walk any distance. (I practiced walking up and down the hallway on the floor our apartment is located on) I had to have my sister shave my head, as I had longish hair at the time of my operation. I still notice the pump from time to time when I scratch my head, and see the scar on my stomach each time I have a shower. For 6 months or so, my wife had to check my scar to keep it clean, as dandruff or crusty dried skin would buildup. I do not notice the shunt, but the pump underneath my scalp most often. That is a brief account of my experience, believe it or not.  
Jim W.



hi, I just saw the article about you and this site in the SB&H newsletter. I got my first shunt suddenly in May 2001 in my late 30s after many years of bad headaches and nausea off and on. I deal with Sudbury neurosurgeons as well. I have had 4 revisions since 2001 with the last 2 in April and May last year. That was a bad run with post op bleeding and confusion after the April revision that only cleared after the May surgery after I was found unconscious, needed to be intubated and put on a breathing machine and transferred to Sudbury. That was very scarey and now I worry that whole life threatening emergency thing could happen again. With my previous revisions, I would get headache and all the other symptoms, my husband would drive me to Sudbury, I would have the CT as arranged through my local ER and then see the neurosurgeon and be admitted if the CT was abnormal and I have had quite a few trips down to Sudbury with symptoms and normal the May 2009 event was very different. Anyway, nice to know there are others so close with many of the same issues and challenges. I have a tumor that caused my blockage and I have an MRI every couple years to follow the tumor but I have had no ongoing follow up through Sudbury for my shunt. Are you getting any follow up or planning through Sudbury to maybe reduce the likeihood of such frequent revisions or at least to manage any ongoing symptoms...I have frequent episodes of tingling on the right side of my face, numbness on the right side of the roof of my mouth and tongue, headaches or feelings of pressure, nausea?

my son was diagnosed with hydrocephalus in 2008 when he was just 2 days old and he had a shunt placed in his head before the surgery i was told he could end up with c.p or die he is my first and only baby and he means the world to me . but just recently over the past couple of months he says he has a headache and then he vomits this happens about every 2 to 3 weeks and i have taken him to our family doctor but she says its nothing but i dont know for sure i was just curious if maybe you could shed some light on my situation i have to travel quite a ways to see his surgon and i am not sure if i should go now or wait till the next visit in june if u have any advice for me could you please email me i would appreciate it alot

Tuesday, March 23, 2010, 11:29:42 PM
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