Daughter just dx

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

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Daughter just dx

Postby sydney'smom » Thu Dec 03, 2009 3:44 pm

Just 2 weeks ago my daughter went in for a CT scan for some headaches and dizziness she had had for several months now. The CT scan showed 1.3 cm Chiari. She had her MRI yesterday and we are waiting on her results. I am wondering if anyone can tell if me 1.3cm is significant ? We don't see the NS until January 5th (today is December 3rd) and I am full of questions. Her headaches continue to get worse and school has been very hard for her. Any help you can give me would be greatly appreciated.
9 yr old daughter with 19mm CM and 1mm Syrinx.
See Dr. Di at Cleveland Clinic and am scheduling a 2nd opinion with Dr. Frim in Chicago.
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Re: Daughter just dx

Postby lcolangelo » Thu Dec 03, 2009 4:22 pm

1.3 cm is about 13mm-- I believe anything over 5 mm is signifigant. But-- they look more at CSF flow--and amount of crowding at the cranio-cervial junction. You can have a large herniation, but if CSF flow isn't impeded they may not be concerned. Did they do a cine flow study with the mri? That test lets them see if the there if the flow is impeded. Sorry you have to wait so long for answers-- I know how hard that is. Keep you in my thoughts.
Lisa
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Re: Daughter just dx

Postby sydney'smom » Thu Dec 03, 2009 7:07 pm

We got the results of her MRI and it is actually 1.9cm with no Syr in the upper spine. Our ped doc still believes her headaches and dizziness are unrealted to the Chiari, but I am not convinced. Should we go ahead and try to find a neurosurgeon that is a specialist with CM? I am so confused.
9 yr old daughter with 19mm CM and 1mm Syrinx.
See Dr. Di at Cleveland Clinic and am scheduling a 2nd opinion with Dr. Frim in Chicago.
sydney'smom
 
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Re: Daughter just dx

Postby lttutrow » Thu Dec 03, 2009 9:01 pm

Just my opinion as a fellow Mom, but yes, if she were my daughter, I would want to have her seen by a neurosurgeon. If you post what major city you are closest to, someone will chime in with some in your area that others have had positive experiences with. Standard of care for these seems to be a full spine MRI, not just cervical, because there are issues that can happen further down that they need to rule out such as tethered cord. Most also do a CINE flow, but I know some don't. Both of my kids have had surgery, my son's herniation was 10mm and my daughter's was 5mm. It isn't always the amount of herniation, but how much that herniation is blocking the flow of spinal fluid or crowding the brainstem. Have you checked out the free booklet on the asap site, it helps explain things too.
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Re: Daughter just dx

Postby sydney'smom » Fri Dec 04, 2009 8:52 am

Thank you for telling me about the brochure on the site, it was very helpful. We have an appointment with Dr. Di at the Cleveland Clinic on January 6th. It can't get here soon enough!
9 yr old daughter with 19mm CM and 1mm Syrinx.
See Dr. Di at Cleveland Clinic and am scheduling a 2nd opinion with Dr. Frim in Chicago.
sydney'smom
 
Posts: 29
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Re: Daughter just dx

Postby youngwife » Fri Dec 04, 2009 1:31 pm

I would definitely get her in to see a Chiari specialist. Her headaches are absolutely related to her Chiari, and should not be dismissed. I am very sorry that your daughter is going through this.

My daughter's herniation was only 2.5mm, which is very small, but her symptoms were debilitating. Size is not the issue at all. Plus, scans don't always show what all is going on.

I hope you are able to find a good neurosurgeon for your daughter.

Blessings,

Rebecca
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: Daughter just dx

Postby lttutrow » Fri Dec 04, 2009 3:26 pm

If you are in the Cleveland area, have you seen the www.chiariansunite.org site? They have a support group and are based in that area.
Best wishes,
Lori
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