Hi everyone,
I wanted to ask a question about having hydrocephalus and possibly being in denial. Let me explain…

I am 40 years old, and have had hydro since birth. I had three shunt revisions through 1986, and was treated for a shunt infection in 1988. At that time, I thought I heard the doctors tell my parents that I no longer needed a shunt.

From 1988 to 2012, I was healthy and experienced no hydro-related symptoms. In March 2012, I began to have severe headaches. After being diagnosed with migraines and sinus-related headaches, I went to the ER. I was admitted to the hospital at that point, presumably for an abnormal CT scan (I don't have memory of the ER visit or being admitted). After a medical workup, I had surgery to replace my shunt tubing from my neck to my abdomen. I also spent a week in physical/occupational therapy to improve my walking/balance/memory.

This was all very much a shock to me, since I thought I was hydro-free. I couldn't understand how any of this had happened. Nothing made sense to me.

Two days ago, I was in the ER for severe back pain. The PA taking care of me ordered a head CT and shunt series to check the function of the shunt. Everything was good. The CT showed normal-sized ventricles, and the shunt was fine.

I had the thought that maybe I didn't need the shunt if the ventricles were of normal size (the rational part of my brain knows that isn't the case, but the emotional part of my brain says "is this really necessary?")

Has anyone else here experienced something similar?

Rob

It is nice to "meet" someone else with who has had hydrocephalus for about as long as I have (I'm 38). I also been asked many times (most recently by a Physician's assistant fellow after my VA shunt revision this past Tuesday) if I am truly shunt dependent after all this time because I was supposed to have "grown out of it." My story is kind of long but while living in Colorado in 2005, I had a pseudocyst that was mistaken for GI problems, which resulted in having my gallbladder removed. The GI surgeon told my husband that the surgery took longer then normal because the amount of CSF in my peritoneal cavity made "everything very slippery" and I had alot of adhesions. Either the amount of fluid present wasn't communicated to the neurosurgeon or he did not get alarmed by this information, because it was not discussed after that and I didn't know that really any amount of residual fluid was concerning because it should be quickly reabsorbed. I moved to Indiana shortly after that and got established with a neurosurgeon "just in case" because I had been informed by my previous neurosurgeon that it was likely that I was no longer shunt dependent. Fast forward to 2009 when I started having similar GI symptoms and my primary care doctor sent me to my neurosurgeon, who immediately recognized that the problem was likely due to a pseudocyst and almost a gallon of fluid was removed from my peritoneal cavity. Two attempts were made to reposition the catheter so that I could continue to have a VP shunt but when I started having clear signs of increased ICP less then two weeks after the second revision, a VA shunt was placed. I moved to the DC area a few months after that and wound up having an abdominal hernia repair related to my previous revisions which turned out to be positive but it motivated me to lose weight, approximately 85lbs. I did not know however that this would screw up my shunt pressure settings because your ICP decreases when you lose that much weight, and wound up over draining for quite some time before my neurosurgeon and I realized it. This was partially due to my poor follow up and partially due to having abnormally large ventricles as my norm, because I have been shunted so long. Apparently there was some problems with the valve, so I got an upgrade this past week. All of this has taught me that the world of neuroscience does not know enough about hydrocephalus to really say that people "grow out of it". It is likely that we may not be as dependent as we were as children so we don't seek out treatment unless there is a complication with the shunt.