My 7 year old son had an MRI for a febrile seizure and an incidental finding of Chiari Malformation 1 was found with a herniation of 7mm. An MRI of spine showed no syrinx right now. My son has no symptoms and I was completely surprised by the finding. I panicked and made appointments with Dr. Ben Carson @ Hopkins and Dr. Keating @ Children's in DC. We just met with Carson yesterday and he told us that nothing should be done. That it is good he has no symptoms and that we should come back in 1 year and re-evaluate. He told us that 2/3 of incidental finding with no symptoms will never have problems. That gave me hope but I still am worried. Is it possible to never have a problem with this? He also told me that the herniation will not get bigger... is that true? Everything I read says that it can get bigger. He also said no to contact sports such as football. Roller coasters are a "no, no" also. What are people's thoughts about basketball and baseball? He loves baseball....
My daughter played softball. Her doctor said that was Ok. But stuff like football and tumbling and wrestling was not a good idea.
I am very happy to hear he has no symptoms. Was that the only febrile seizure he has had? My daughter had one when she was very young and no one at that time mentioned Chiari. That was about 11 years ago though.
We never knew she had it and she went to karate for a few years when she was younger. She was very good and actually got her black belt. She out grew that though and now I am glad she is over with it because she probably could not do a lot of the things that she did when we didn't know. I cringe now when I think about it.
I worry about her everyday now that we know she has this. I am not quite as panicky as I used to be. Sometimes. She went to the boardwalk a few weeks ago with her friend and she told me about a ride she went on. I was very upset but she said it did not throw her head around. I know she wants to be like her other teenage friends but there are just some things that she should not do. She does n ot even want her friends to know that she has this problem.
I would follow what the doctors say especially if they are chiari specialists.
I just wanted to let you know that my daughter has a much larger herniation but she does not need surgery at this time and her specialist had no problem with her playing softball. He told her to have fun with it and for me not to worry so much.He did say she could play basket ball and soccer as long as she could handle it but that is too much running for her. the running puts too much strain on her that is why softball was good. She didn't want to play this year. Teenage thing.
Good luck and take care.
Hi...as someone that is older who also has chiari...nething from a fall to a bumpy car ride can trigger the chiari symptoms.
I do not think it is well known as to why some have chiari and no symptoms.....but u should be looking to see how overcrowded the area is and if there is a CSF blockage.
Softball doesn't sound that bad, unless u have ever been hit in the head by a ball....or someone knockes u over trying to get to base.....it is these simple falls and incidents that can affect chiarians.
I would suggest u see a chiari specialist and make sure there is no overcrowding and CSF blockage...and the reat of the suggestions about roller coasters ect is true.....
Do talk with ur son, and ask....does it ever hurt his head when he moves his bowels...as a child I had no idea this wasn't normal and even as an adult had no idea it was a symptom of ne thing....we tend to compensate naturally without knowing.
I pray chiari symptoms and other chiari related conditions leave him alone.
No the herniation will not get bigger. Yes all contact sports need to be avoided. I am a Chiari mom of two boys and I have it too. Trust Dr.Ben Carson. My son has a 15cm. Other son 5cm, and myself 5 cm. Anthony 15 had surgery and doing wonderful. Myself also had surgery . Just in time for the durra was on the verge of opening on its own. Most important advice I can give, is listen to your child. Your child feels the pain and no DR can understand that. You as a parent can. As a parent we feel every moment of pain our children go through.
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