When I was 5 years old I went into the ER with sever neck pain and was diagnosed with scoliosis. Because that was such a young age they (Shriners) did an MRI when I was 10 and found out I have Chiari Malformation. I had no symptoms to speak of! But they did surgery right away, even asking to use my MRI images in a paper! They went in and took out a couple vertebra and shaved down part of my skull and put some sort of hid in to hold my brain in place(sorry I don’t know the technical term for this surgery, I was only 10 when all this was explained to me). Surgery went just fine and follow up MRIs looked good. I don’t remember them saying I shouldn’t do certain activities or restrict myself from anything (although, again, I was only 10 and the only details I remember were my parents being scared). I do remember my scoliosis doctor said I shouldn’t be treated like any other child, and that I should be allowed to do whatever I felt comfortable doing. I haven’t seen a Chiari specialist since I was diagnosed. I’m now 24.
Reading some post on this forum has got me all freaked out! Lol Is it common to not be followed up by a specialist? I know my case is a little different since I was being seen at the Shriners which is just for children, but they never recommended that I should follow up with any doctors… Is it true I should restrict my activities; I’m a very active girl and have had no problems till now.
I’m feeling very dizzy a lot of the time and since I never had any symptoms before I don’t know what to look for. Is it true that symptoms could come back or you may have to have surgery again? I know I’ve grown quite a bit since I was 10! Any helpful advice or any similar stories would be appreciated. I’m planning on setting up an appointment with a specialist sometime soon just to be more informed on my individual case, but until then…