Newly Diagnosed
 

....a little background info...

I was born at 28 weeks gestation in 1984. After birth, I had several brain bleeds and as a result developed hydrocephalus. I had surgeries to drain the cerebrospinal fluid. However, I didn't have a shunt placed. I left the NICU after 3 months. I entered an early intervention program at 7 months and remained there until I was 4.5 years old.

My development was never monitored by neurologists or specialists. I think my parents thought I was "just fine".

Throughout the years, I've realized that motor tasks are difficult. I have significant weakness on the right side of my body. I've suffered from headaches for much of my life.

Anyway, growing up I never realized the impact not seeing a neurologist or specialist was having on me. I moved out of my parents house 3.5 years ago and it was then that I decided I needed to take charge of my own health.

I've been seeing the same primary care physician for about 2 years now and she's been following my headaches. The headaches over the last 4 or 5 years mimic migraines. In the spring of 2011 I was prescribed Imitrex for my headaches. My headaches weren't responding to the pain. About a month ago I went for a follow up with my doctor and she was concerned with some neurological things she was seeing (it was hard to know if these signs were new/worsening because my neurological symptoms were something I grew to know as "normal"). I went back to the doctor last week with definite worsening of neurological functioning. She ordered an MRI and the results came back positive for hydrocephalus. I see my doctor this Tuesday to discuss treatment.

Anyone have experience with hydrocephalus returning after 27 years? I guess I should have been shunted all along?

Thanks