Hi All,

I am brand new to this site but desperately looking for someone else that understands what I am going through and who can possibly provide some guidance. I was diagnosed with Chiari in September of 2017 and had my Lumbar Decompression Craniotomy on 11/17/2017. While it was absolutely awful, I made it through and began to heal. Three days after I returned to work on 1/3/2018 I was taken to the hospital where I remained for a month because I had contracted Meningitis. They had to completly reopen everything that had just begun to heal to do a debreavement. While in the hospital with a neck and back drain they discoved I had hydrocephalus and put in a Strata LP Shunt. Apparently, my ventricles were too small for a VP shunt. I went home with a pic line for 6 weeks to fight the infection. I was in horrible pain and after some time still could not be upright for more than an hour. They later decided I needed a valve, so had my fourth surgery to have that installed. That helped tremendously with me being able to be upright again. I had one more surgery to file down a bone that was protuding on the back of my skull where the skin had become paper thin. It has now been a year and I have have gone back multiple times to have my shunt adjusted because I keep having too low of pressure or too high. I have seen a huge decline in my vision and they have confirmed significant field loss in my left eye. I was and still am fairly fit and try to stay positive but must say I don't feel like myself at all. I was evaluated by a neuropsychologist who confirmed she could see some significant issues, not only with my ability to process things but also my mobility with my hands and my eye issues. I have had a wound on the back of my head for almost a year that they have had me see plastic surgeons about and now need to meet with another neurosurgeon while they consider a surgery to fix it. I feel like I am not being taken seriously.  I have been able to continue working and am very involved in church which helps me stay focused but each day is truly a struggle. I just don't feel well, have lost my energy, am tired of struggling to see and to clearly think. I have tried counseling too but haven't found the right fit yet. I now am facing another week of intense pressure in my head and vision issues and feel I need to have my shunt adjusted yet again. Has anyone had any of these issue and if so, what have you done. I hate to complain and try hard not too but getting a bit frustrated. I can accept my body changes if this is the way it will be-guess I just need better coping mechanisms. I must say, I am 100% grateful that the incessant headaches I had before the chiari surgery have drastically lessened.