Junior Member
|
|
Join Date: Oct 2013
Posts: 16
|
|
Junior Member
Join Date: Oct 2013
Posts: 16
|
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.
|