Arnold-Chiari Malformation Support Group

I can only tell you about how an adult has gone through it. I think it's a lot different in children. Have you found a pediatric neurosurgeon in your area that specializes in chiari?

My five year old was also just diagnosed with Chiari 1. He was having headaches at the back of his head and vomiting so they sent us for a MRI of his head. That's when they found his Chiari malformation. The neurologist that we were sent to seems to think that his Chiari is not causing his symptoms but I do not agree. I am on search of another neurologist. What kind of symptoms does your child have and have you found good medical treatment?
Chrissy

My 12 year old has chiari we have been looking for a doc that will help for 6 months. They all have said is that her sickness is not caused by the chiari. So all you can do is keep looking until you find someone that will listen. Most people have suffered with this for years when they didn't have to because they listen to the doctors. Keep looking and don't give up hope you are the only one that will fight for your child. I am bring Sam to the Mayo Clinic in July I hope I have better luck there. Good luck and you and your child will be in my prayers. If you need someone to talk to you can email me.

Thank you so much for your kind words. I will not give up hope and I will continue to fight for him so that he doesn't have to suffer his whole life. We live in Tennessee and I have recently discovered that Vanderbilt Children's Hospital has some great neurologists and neurosurgeons that have dealt with Chiari 1 patients so I think this will be our next destination.

Hi

We live in Charlotte, NC. My 6 year old daughter was diagnosed with Chairi Malformation type 1 with syrinx just 2 weeks ago. This was found purely by accident. Once we spoke with the Doctor and the Neuro Surgeon we were refered to we got some further information. People do live with CM for a great number of years with no symptoms until eventually they start exhibiting some. My daughter has been having health issues since birth and we are now realizing that they older she has gotten a lot of her symptoms were related to this. The syrinx is a cyst in the spinal cord which is caused by the pressure of the cerebellum pushing down. If you had a MRI this would have been picked up. Unfortunately, my daughter needs to have Surgery - it will not repair the Chairi nor the syrinx but should hopefully relieve some pressure on the spinal cord and not cause irreversible damage to her. If your child has been diagnosed and does not have the syrinx, my daughter's paediatric neuro surgeon has said that they basically watch it very carefully, deal with the symptoms, i.e. pain etc. I do not know where you live but Dr Michael Heafner at Carolina's Neuro & Spine is really good - he is Yale educated - has been in practice for 29 years and is affilated with Levine Children's Hospital. I too have researched and researched and I am now dealing with the anxiety of daughter facing brain/spinal surgery as well as the financial implications - our insurance is good but not good. I hope that you can find someone that can give you some peace of mind - I hope that for me too.

Hi

We live in Charlotte, NC. My 6 year old daughter was diagnosed with Chairi Malformation type 1 with syrinx just 2 weeks ago. This was found purely by accident. Once we spoke with the Doctor and the Neuro Surgeon we were refered to we got some further information. People do live with CM for a great number of years with no symptoms until eventually they start exhibiting some. My daughter has been having health issues since birth and we are now realizing that they older she has gotten a lot of her symptoms were related to this. The syrinx is a cyst in the spinal cord which is caused by the pressure of the cerebellum pushing down. If you had a MRI this would have been picked up. Unfortunately, my daughter needs to have Surgery - it will not repair the Chairi nor the syrinx but should hopefully relieve some pressure on the spinal cord and not cause irreversible damage to her. If your child has been diagnosed and does not have the syrinx, my daughter's paediatric neuro surgeon has said that they basically watch it very carefully, deal with the symptoms, i.e. pain etc. I do not know where you live but Dr Michael Heafner at Carolina's Neuro & Spine is really good - he is Yale educated - has been in practice for 29 years and is affilated with Levine Children's Hospital. I too have researched and researched and I am now dealing with the anxiety of daughter facing brain/spinal surgery as well as the financial implications - our insurance is good but not good. I hope that you can find someone that can give you some peace of mind - I hope that for me too.

im sorry about your child it must be so hard to deal with i know for me it is frustrating and im an adult but to know your chid has it must be very hard. one thing i realized about ACM is that we who are diagnosed with it are all pretty much told that the ACM couldnt be causing our symptoms cause its to small but we are all feeling the same thing so that in itself tells me YES ITS THE ACM i want you to know that ill pray for your boy good luck