[Isa_91]

Hi everyone Im new here! Im a 19 year old girl who was born a premie and Im the second of twins. I was diagnosed with hydrocephalus when I was 6-7 months old (can't remember) and I had surgery. I had never had a revision until I was 16 years old in November 2007. My shunt was out of place in my head and out of place in my stomach turns out I had outgrown the shunt. I have a programble shunt know. A vp strata valve... but over the last 2 almost 3 weeks I've had headaches almost everyday. There not like migraine type one's that I've had before. There more like sharp pains on the side where my shunt it at and pain around my eyes and pain that feels more like pressure in my forehead.. Also I have had non stop neck pain along where my shunt it at. It makes it had to sleep on my right side, where my shunt is at. Also I have abdominal pain that comes and goes. Last Friday I threw up, I was extremely nauseous. I went to bed and woke up feeling a little better. But now I have nausea that doesn't go away. Is this something I should be concerned about? I'm just learning about hydro. Before my surgery in 2007 I didn't even know what my condition was called, all I knew is that I had a little tube inside me. My parents are Hispanic and they didn't know much English when I was born, so they didn't know much about it to tell me. I would appreciate your help..
-Isabel

[gizzy_gal]

Hi Isa_91,
My name is Carrie, I am 22 and I have had hydrocephalus since birth, and like you had no complications until i was almost 16, by the sounds of it you are having some very serious problems with your shunt and hopefully have had it checked by now!!
Good luck with everything and hopefully they fix your shunt for you!

[res5562965]

Originally Posted by Isa_91

Hi everyone Im new here! Im a 19 year old girl who was born a premie and Im the second of twins. I was diagnosed with hydrocephalus when I was 6-7 months old (can't remember) and I had surgery. I had never had a revision until I was 16 years old in November 2007. My shunt was out of place in my head and out of place in my stomach turns out I had outgrown the shunt. I have a programble shunt know. A vp strata valve... but over the last 2 almost 3 weeks I've had headaches almost everyday. There not like migraine type one's that I've had before. There more like sharp pains on the side where my shunt it at and pain around my eyes and pain that feels more like pressure in my forehead.. Also I have had non stop neck pain along where my shunt it at. It makes it had to sleep on my right side, where my shunt is at. Also I have abdominal pain that comes and goes. Last Friday I threw up, I was extremely nauseous. I went to bed and woke up feeling a little better. But now I have nausea that doesn't go away. Is this something I should be concerned about? I'm just learning about hydro. Before my surgery in 2007 I didn't even know what my condition was called, all I knew is that I had a little tube inside me. My parents are Hispanic and they didn't know much English when I was born, so they didn't know much about it to tell me. I would appreciate your help..
-Isabel

I finally got a correct diagnosis 11/2010 after living with constant severe pressure pain in my head for over one year. I had many symptons one year prior to the pain in my head: constantly sleepy, hearing a clicking noise in my ear, numbness of face and head, confusion, mood swings, problems with walking and balance. I was diagnosed with Chiari I Malformation and Arnold's Chiari(causes the hydrocephelus). Chiari will show up on a MRI if read correctly. After my Chiari diagnosis 11/2010, I had a MRI study of the spinal fluid in my head. That is when I was diagnosed a few days later with Arnold's Chiari. I had to immediately have a VP shunt **(8 shunt surgeries from 11/2010-10/2011) put in my brain that allows the spinal fluid to flow to my abdomen. That gave me immediate relief from the pressure pain in my head. However, it did not get rid of the pressure pain in my head when I sneezed, coughed, gagged, or laughed. In Feb. 2011 I had Chiari Decompression surgery to make the opening at the base of my brain larger. I also had to have some verterbrae removed to relieve the "brain tonsils" from being herniated through the small opening at the base of my skull which was causing the remaining pressure pain. This is a congenital condition and the doctors have no idea why I never had any problems from it until age 48. It took several years for this to be correctly diagnosed. I hope this information helps someone that may be having the same problem. Unfortunately my short and long term memory and my eyesight have been affected due to all the pressure to my brain. I still have some pain but at least now it is not constant pain. **Shunt revisions, malfunctions, and tube in abdomen coiled causing infection in my brain(19 days in hospital that time). First sympton I had with all these shunt problems was nausea. Don't wait, find a neurosurgeon that will listen and don't stop talking til you find one that will! Sorry this is so long and I hope I haven't scared you to death but I want to be truthful. God Bless you!