Chiari Online Support Group

13yr old daughter recently diagnosed

Hello! I have a 13 year old daughter who at the beginning of the hear had been sick with headaches, Blurred Vision, nausea, fatigue, and stomach pain. She had a MRI done finally and they diagnosed her with “mild” Chiari and referred her to a neurosurgeon at Arkansas Children’s hospital. She has not had one day where she doesn’t have some kind of headache along with other symptoms. The worst is when she’s crying with headache and nausea and there’s nothing touching her pain. We have an appt for March 15th but that just seems so far away. I’m doing as much research as I can and learning about this that way when we go to her appt I am prepared. My husband and I feel helpless to help her at the moment.
Does anyone have any recommendations or doctors in the Arkansas/Texas area they recommend?

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Hi - I have a 12 year-old daughter with very similar symptoms as you child. While her current neurologist made notes of an unusual MRI, they said not chiari because my daughter did not have all the classic symptoms. I have been waiting for a second opinion from CHOP in Philadelphia. I feel your frustration when your child is crying for you to help them. Good luck!
PS - Does your daughter have any scoliosis?

Hi! I have a 15 year old daughter who was diagnosed 4 years ago and at that time had decompression surgery. We had no choice but to go with surgery because our daughter’s Chiari was causing syringomyelia. She has battled headaches since then but was able to live a relatively normal life that is up until 4 months ago when her headaches became chronic and just wouldn’t go away. We have tried everything . Forget over the counter meds- they do absolutely nothing. I feel for you and your daughters situation. The waiting for appointments is the hardest thing. You sit and watch your child in pain and there is nothing you can do to help her. You are doing the best you can. Reading and familiarizing yourself with the information that is available on the internet is a step in the right direction.Just remember there are no dumb questions and you need to be your daughters advocate- ask and question everything. I completely understand your feeling of helplessness. If we could we would take the pain for them but unfortunately we cant. We just want our child to be healthy and go back to a normal life. Unfortunately, I’m in New Jersey so I can’t recommend anyone in your area. We actually have an appointment in New York on March 8th with a Chiari specialist. The best of luck to you and please keep us updated on your daughters condition.

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Hello I am so sorry she is dealing with this I know for you it must be difficult. Best thing to do to prepare for the appointment is come up with questions for the neurosurgeon. If he/she suggests surgery ask what other options they may suggest? Has that Dr done these surgeries before? how many times and what percentage have been successful? If they think surgery isn’t needed what therapy or medicine could help her manage the pain?

She has a curve in her back on the left side. She has been X-rayed for it for three years now. Her curvature at this time last exam said it wasn’t “scoliosis” but she does have a curve. I got her medical records to take with us to her appointment Thursday and I noticed on her diagnosis’s that they have recorded idiopathic scoliosis and kyphosis which is Hunchback but we haven’t been told any of that.

I am so sorry your daughter is going thru that. I hope you get some answers with the second opinion!!!

Thank you all for your advice and encouragement. I do have a folder I’m taking with me with her records, films and mri she had done. Along with all of the questions and concerns we have. I have documented all her symptoms as well by day for the past month and a half.