12yr old. Help!

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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12yr old. Help!

Postby Beach4me » Sun Jan 20, 2008 9:37 am

My dd had a CT scan last week. Dr called to say she needed an MRI and perhaps it was Chiari Malformation I. He said but maybe that is not it at all. Gee thanks.... So, we have a MRI appointment next Tuesday.

Her symptoms are:

Constantly tired. Sleeps but never rested. (about 8 mths now)

Headaches that are getting worse (in last six weeks)

She says that she hurts all over. She can't get comfortable at night. (in last 3 months)

Her feet hurt, especially when she wakes up in the morning. On the bottom.

She does not appear to have any balance, coordination or motor issues.

Anybody know what she is talking about? Can anyone relate? She was born with a very dark "mole" with long hair coming out of it, on the back of the head. When had it removed when she was about 8 months.

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Postby brianfsmom » Sun Jan 20, 2008 4:47 pm

Hi, sorry to hear about your daughter. It is good that you're getting the MRI. First, you at least have had the CT, and that would help to rule out other concerns (such as tumors or hydrocephalus)

Did they think they saw something that could have been chiari on the CT, or are they saying that they can't tell anything from CT so they need MRI?

If it is chiari (and yes, those symptoms can be from chiari, although not everyone has the same symptoms as others) then at least you have found out. Many children manage without surgery, and many others have surgery and see improvements.

Without the MRI, unfortunately, you can only speculate. The waiting truly is the hardest part. Good luck Tuesday, please let us know how you make out. Sorry not to be more helpful.
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Postby Beach4me » Sun Jan 20, 2008 5:41 pm

Dr. requested the MRI because of what was seen on the CT Scan. He thought it to be Chiari Malformation but was not sure.

How can he not tell? I understand wanting the MRI but doesn't a CT scan show bone structure? Wouldn't that show if the bones are not correct?
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Postby brianfsmom » Sun Jan 20, 2008 7:01 pm


A CT scan is not a preferred test for diagnosing chiari. In order to tell if the brain is herniated, the scan needs to show soft tissues in more detail.

The MRI will give a clearer picture of the brain tonsils. I know the Chiari Institute uses a combination of 3D CT scan and MRIs as part of their work-up but we have only ever had MRIs.
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Postby Sara » Mon Jan 21, 2008 8:51 am

Once you get the MRI, the next step is to find a good pediatric neurosurgeon. What state do you live in? Are you near a children's hospital?
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Postby lalaswihart » Mon Jan 21, 2008 10:09 am

I am so sorry you are going through this. My daughter started with being very tierd and headaches then they started keeping her up so Our pedi. ordered a CT and that is when they saw the Chiari 1. I totally freaked out, so we saw a Neuro. Dr. and he ordered the MRI, they saw the chiari and the syrinx. So a CT can see a few things but not as much as an MRI.

After MRI and you get your results I would highly suggest you find the BEST CHiari DR., We use Dr. Bolognese with the Chiari Institute in New York, even though we live in Texas, we had a different top neuro at frist for my daughter and he did two surgeries on her that not only did not work, but she keep getting worse. He is an excelent DR. just not a CHiari Dr. After my daughters surgeries at TCI she is riding bikes again, coloring again, playing and has more energy, she is back to the kiddo she was 2 years ago.

I will attach a link to there website video page it has a lot of good info so If your daughters MRI comes back with a positive Chiari diagnosis you can do some research.

Good luck and God Bless
Tx mom of 4 beautiful little ones
8yr old CM1/SM/TC/EDS,
6yr old twins CM1/ TC both possible EDS
4yr old CM1/TC

"For nothing is impossible with God." Luke 1:37
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