I am 11 and I have been diagnosed with a chiari malformation?!

I am 11 and I have been diagnosed with a chiari malformation?

It all started in second grade. I started walking on my toes, so I saw a neuro surgeon, and he suggested an MRI. He saw something in my brain, but turns out, it was a shadow, so then my parents found out my dr doesn't take their insurance anymore so we went to see another dr, and he said that I might have a chiari instead of a brain shadow, but he couldn't tell, so I had another MRI, but the shadow grew bigger, so he said it is a chiari, but he said it's not the reason I'm walking on my toes, my parents decided to see ANOTHER dr and see what he thinks. He said my heel cords probably weren't growing properly so I had surgery in 3rd grade. 3 years later, my chiari grew bigger, so we went to the 2nd dr, and he said let's take it out July, but then the insurance company didn't confirm my surgery, so now my parents are talking about my chiari like crazy now, so I'm getting stressed out. If you have anybody you know with a chiari, or know anything about chiaris please tell me.

My 8 year old son has Chairi, he just had decompression surgery and he is doing quite well, however, I agree Chairi is probably not the reason you were tipping on your toes, it can cause a number of problems such as, tingeling in your arms and legs and other places, headaches, blurred vision, and others. Chiari is pretty visible on an MRI, and if your parents looked into it, by going to google images, and looking up Chiari Malformtaion, they could probably see yours on the MRI ( I personally belive that it does not look like a "shadow". The decision to have surgery is a hard one, like the previous person answered, it took me two years to decide what to do about my son, and I had been to 4 yes 4 neurosurgeons. Here is the best advice that I can give, make sure your parents get and keep all copies, of dr's and neuro-s's reports, and get copy's of your MRI's on CD. I would ask your parents to find a doctor, or ask to be referred to a doctor that handles Chairi on a regular basis.. There are lots of places you can go to get information, the one that helped me the best is www.conquerchairi.org tons of help and information there, also try having your parents talk to other people that have this condition, it's not something to be taken lightly. My best wishes to you!! P.S I dont know if there is a way to do this, or not, cause I do not answer here on yahoo much. But if need be and you or your parents have more questions, feel free to contact me. or you can email here decievingly_innocent@yahoo.com