Confused!

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

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Confused!

Postby kellycotton1432 » Thu Mar 04, 2010 9:01 am

My DD has a syrinx from C4-C7, she was just diagnosed after having an MRI, for numbness in her lower legs and severe headaches. A Pulmonologist actually had the first MRI ordered, and from what I gather it was of the Cervical and Lumbar. When the results came back, the Pulmonologist sent us to a Neurologist who ordered a brain MRI and Cervical with contrast. Now we have an appointment with a NS on the 15th... My problem is that after thinking about the results I realized that an MRI of T-Spine was never ordered. Do any of you know if the T-spine is actually done if both the Cervical and Lumbar are done? Or should call the NL and see about getting one ordered, or maybe just wait to talk to the NS. Considering her syrinx is to C7 I'm worried that it could go further into the T-spine as well...

Thanks in advance for any help :)
Kelly
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Re: Confused!

Postby lttutrow » Thu Mar 04, 2010 1:01 pm

For my kids, if they hadn't already had a full spine MRI done when we saw the nsg., then the nsg. ordered the full spine to be completed. Hope you get answers when you see the nsg. on the 15th, keep us posted!!
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Re: Confused!

Postby jupes » Sat Mar 06, 2010 12:35 am

Hi Kelly!

You are right that a full spine MRI is usually recommended and the syrinx could extend into the thoracic spine! I would contact the NS and make sure they know a thoracic MRI has not been done yet. They may want to schedule this prior to your DD appointment!

Good luck!
Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: Confused!

Postby kellycotton1432 » Sun Mar 07, 2010 10:50 pm

I left a message with the Nl office on Thurs and they never called me back! I hate that! I am going to call the NS in the morning, thanks for your help. I have one more question... I called the office that did the MRI and they won't give me a copy of the written report without the permission of the NL, and the NL said NOm that they will send it on to the NS. Is that even right?! I thought I could have a copy, it's mine isn't it?? They gave me the CD with the images, but refuse the written! ugh
I will keep you all updated...one more week unril we see NS

Kelly
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Re: Confused!

Postby lttutrow » Sun Mar 07, 2010 11:35 pm

Everywhere we've ever had an MRI done, we can get a CD of the actual scan as soon as we're done. Sometimes we've needed copies for other drs. later, and have gotten another copy several months later. They won't give us the radiologist's dictation though. We've gotten this from our NL and then later from our NS. Yes, it is definately reasonable to expect your NL's office to send this to you upon request. Some ask if we are sending this information for a second opinion, YES...yes we are, and usually we do. A lot of times, things are mentioned on the dictations that especially nl's tend to write off as incidental findings, only later to find out they aren't so incidental.
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