Chiari Malformation

I was 18mths old when my parents found out I had a speech delay. I only had 3 recognizable words.  The family doctor also told my parents that I had fluid built up in my ears that I needed to see an ENT.  The ENT gave me a hearing test which I failed, I was almost deaf in my left ear.  Tubes were put in my ears.  Mom had to look for a speech therapist, since our insurance wouldn't cover one.  Our local MRDD had a program called Help Me Grow.  They evaluated me and not only was my speech delayed I also had fine and gross motor delays.  The therapist's came to my house to work with me.  I stayed with the program till I turned 3 years old.  I was then switched over to our school systems Pre-school program.  Over the summer right before I turned 4, my parents noticed my left eye crossing inward.  At first they didn't think much of it but then my eye started to cross inward more and more.  They took me to see a Pediatric Ophthalmologist (Dr. North).  He told my mom that I would definately need glasses and he was concerned that my optical nerves were swollen.  He ordered a MRI.  Wow, that machine was big and I really didn't like the noise.  I layed still the whole time, I watched Thomas the Train movies. The nurses were suprised that I layed still and didn't have to have medicine to make me sleep through it.  The next day Dr. North called with the results. (Mom didnt answer the phone the first time he called because she didn't recognize the phone number, (he was calling from his cell phone because he was out of state visiting familiy).  He told Mom that I had something.  I couldn't pronounce it and she was having trouble pronouncing it also.  I had Chiari Malformation.  Dr. North told Mom that a Neurosurgeon would be calling to set up an appointment.  Mom started going a little nuts....she was always on the computer trying to read about this Chiari thing.  We went to see the Neurosurgeon, his name is Dr. Mangano at Cincinnati Children's Hospital.  I remember him looking at me and then taking us in another room to see weird pictures on a computer screen.  We get home and Mom is upset.  She tells me that I have to have surgery on my head.  So, within a month I am in the hospital having surgery.  (January 2007) Mom tells me that surgery went well.  I don't feel well at this point.  Soon I move into a different room and :) I keep the nurses REALLY busy.  I was walking with my Dad, my MaMaw and a nurse down the halls.  I looked at MaMaw and tell her lets get out of here.  Soon the nurse and my Dad are telling me to slow down.  I kept the nurses busy keeping in stock of Thomas the Train movies....I would even have them searching at 1-2am for a movie for me.  I got lots of gifts while I was in the hospital.  My two Pre-school teachers even came to visit me and bring me gifts and a card from my classmates.  My neck was sore!  I could hardly move it from side to side.  Oh, that tape they put all over my hands and foot.  That hurt coming off!  The one nurse was not going to let me leave because I wouldn't go.....(#2).  Mom told her that I was not going to go #2 at the hospital that I would once I got home.  (I didn't want that toilet to swallow me)  I get to finally go home....of course once I get home....#2.  :)   Mom makes me a bed down stairs in the livingroom for awhile.  She slept on the couch next to me.  And of course I get the star treatment for weeks.  After a few days I was up and playing with my brothers.  (Don't tell them this but I did miss them while I was at the hospital and wish  they could of visited me)  Next thing I know, I am back for my 3mth post-op MRI.  Dr. Mangano calls to tell Mom that things are "stable".  I have been back to school by this time and have a few restrictions on our playground but I am feeling good.    Soon Pre-school is over.  I am out for the summer.  I just started Kindergarten.  I am doing good.  I have headaches every once in awhile and sometimes I have trouble walking and walking down stairs (I fall).  But it doesnt happen all the time.  So this is me and my story with Chiari!!