mri

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

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mri

Postby lcolangelo » Sat Jun 05, 2010 10:21 am

Does anyone know if a doctor can assess the status of a chiari with an mri of just the brain? My 4 year old was decompressed in Feb in Iowa (we're from NY)-- he began having horrible headaches the other night- then woke with numbness in arms and legs. We went to our pediatrician-- who sent us to a neurologist= because our neurosurgeon is out of state-- she just wanted to get a quick assessment. He sent him for an MRI just of the brain-- which I didn't realize until we were actually at the MRI place. The neuologist -- who was very nice-- called us right away with results== and thought everything looked good== I just worry that because they didn't evaluate the c-spine-- that he didn't see the "whole picture" . I thought they needed to see the c-spine to make a good judgment. Won't be able to talk to our neurosurgeon until next week. Any feedback would be great!
LIsa
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Re: mri

Postby lttutrow » Sat Jun 05, 2010 1:34 pm

On the brain only MRI's for my kids, it shows down to some of the c-spine and can assess the Chiari well. What it may or may not catch is any sm, only if the sm is up high will it be able to check for that.
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Re: mri

Postby youngwife » Sat Jun 05, 2010 2:57 pm

Yes, it would show the hindbrain and upper neck area, but it wouldn't necessarily show if your child were experiencing high inter-cranial pressure or possible scar tissue.

I understand how frustrating it is to hear "normal" when your child is not feeling normal at all. :cry:

(((HUGS))) I pray that you are able to find a cause and answer soon.


Rebecca
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Re: mri

Postby Catherine » Sat Jun 05, 2010 4:45 pm

We've only had brain MRI's for the Chiari. We had an MRI of the spine before decompression just to make sure nothing was missed. I'm so sorry your son is not feeling well. Catherine was decompressed in Feb also and has had a horrible time recovering. She's starting to feel better but we keep expecting the ICP to come back. We will find out the results of her 3 month post op MRI on Monday. Hopefully they will be close to normal.

I will pray that he starts feeling better soon.

Crystal
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Re: mri

Postby lcolangelo » Tue Jun 08, 2010 7:39 pm

Well on Friday the neurologist called and thought everything with my sons MRI looked good-- we were so relieved to hear it-yet still afraid something was not right. The neurologist had never seen us-- he was just giving a consult as our neurosurgeon is in Iowa. Yesterday the pediatrician's office called to say that we needed to overnight mail the films to Iowa because the report she got from he radiologist said that there was a complete blockage of CSF and that there appeared to be bone re-growth. We are so frustrated to have 2 completely opposite reports! We've sent off the films- and now have the horrible task of waiting to hear. I'm beside myself because if there is re-growth-- this will be the second time -- he has had 2 decompressions in less than a year-. The doctor said it is almost unheard of-- that out of 800 cases, there have only been 3-- and 2 of them are my kids! He is one of the best in the country-- so we do trust him-- but really???? Why us??? Keep us in your prayers-- and hope that it's the radiologist that's wrong this time. Sorry so long-- guess I needed to vent!
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Re: mri

Postby Janice » Tue Jun 08, 2010 7:57 pm

Hopefully, he's not just one of the best, but he's a CM/SM expert. A NS can be the best in the world, however, if they don't deal with CM/SM on a regular basis they could do more harm than good. It's awful that a young child has to go through so many surgeries. I've read that the bone can re-grow in a young child because, in general, their bones are still growing. If the symptoms aren't too bad, why can't the surgery be delayed until the child is no longer in the growth period (if symptoms aren't too bad during that time, and depending on how many years this will be).

I'm so sorry to hear that your child might need another surgery. As a mom of 3, I can totally understand your frustration.

Take care, you're both in my thoughts and prayers.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: mri

Postby lcolangelo » Wed Jun 09, 2010 8:35 am

Yes-- our doctor is a CM expert-- it's Dr. Menezes-- he acutally is head of the medical adviosry borad for ASAP
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Re: mri

Postby Sara » Tue Jun 15, 2010 6:53 am

You need to be in contact with your nsg no matter where he is. You should mail the films to him. Only the nsg can review the films and tell you if things are okay. Your nsg should still be directing the after care.
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Re: mri

Postby lcolangelo » Tue Jun 15, 2010 3:14 pm

Thank you-- yes we did mail him the films. They feel they can't make a good diagnosis as they feel there was movement during the test-- they need us to come to Iowa for a repeat MRI under sedation-- which we are doing next week. Keep us in your prayers.
Lisa
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