Chiari Online Support Group

Spinal MRI coming up

My daughter was recently diagnosed with Chiari 1. Her herniation is 12 mm. For almost a year we’ve noticed her health declining. We’ve seen 5 specialist including a kidney and bladder dr for blood in her urine but no infection. We see a GI dr for abdominal migraines. A neurologist for headaches and dizziness. That’s who found the chiari. Now a neurosurgeon. This weekend she is scheduled for a spinal MRI to look for syrinx on the spine. I’m so incredibly nervous. In the last few months I kept thinking she walks funny but couldn’t pinpoint what was strange about it. Then at the beach I noticed her footsteps in the sand have drag lines behind them. I’m so worried she does have Syringomyelia. Everyone keeps telling me that what I’m noticing with her walk is due to a growth spurt which she did just recently have. Before seeing the GI she had such terrible GI symptoms she had trouble eating and couldn’t gain weight. They have her on meds that help and she has gained about 12 pounds and grew an inch in three months. So maybe the change in her gait is from a growth spurt. I’m just scared. She’s 11, almost 12. She starts middle school tomorrow. Last school year was so hard. Sorry I’m rambling. Very few people understand my feelings.

It is clearly a scary time. No one wants their child to go through those issues.

It sounds like you are going down the right pathway(getting the images and seeing a neurosurgeon).

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Thank you Dr Trumble

She had a her MRI today and did great. She was a little scared but our Children’s Hospital is so great. She was able to watch a movie. Now we just wait for The results

No syrinx was found but the radiologist did see a spot of some sort on her kidney. So we have an appointment for an ultrasound and a follow up. Hoping it’s an incidental finding.