Twins with Chiari, decompression surgery done 4/7/10

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

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Twins with Chiari, decompression surgery done 4/7/10

Postby acmebray » Mon Apr 12, 2010 3:01 pm


I have been reading this board for the last few months. I have twin girls who are dd, one has autism both have a rare syndrome that was just diagnosed. They are 13. One of my dd's was diagnosed with scoliosis about 20 months ago. It was 30 degrees the other had a 23 degree curve. The scoliosis was very rapid in it's progression. While seeing the Orthopedic surgeon to schedule surgery we requested that he do an MRI to see if anything else was going on. He did so and found multi syrinxs almost the full length of her spinal cord. We did three more MRI's were sent to a neurosurgeon and they said she did not have a Chiari. They were going to schedule the fusion surgery for the scoliosis and a surgery for a shunt when I asked that the other child have an MRI done as well. It was done and found she had the same thing. I asked to have a second opinion. We are from NM and there is only one neurosurgeon there and so we came to Denver. Both girls did have a Chiari and were scheduled for surgery. They had the surgery last Wednesday and it has been a very hard 5 days. Both surgeries went well. The girls are in a tremendous amount of pain, one has severe headaches every time she wakes up and is on the maximum dose of drugs that she can be on. She refuses to move her head, screams and cries for hours on end, has not started walking again (She walked fine before) and is just miserable. My other daughter is off all narcotics, is just getting valium for the muscle spasms, tylenol and Ibuprofen every 6 hours. I don't understand why one is doing so well and the other seemingly is in so much pain. I know everyone is different in how they handle things and I'm sure there were differences in the degree of the chiaris but it's worrisome. If anyone has any advice please share it.

Thanks for letting me vent here.
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Re: Twins with Chiari, decompression surgery done 4/7/10

Postby Sara » Mon Apr 12, 2010 3:50 pm

ask your doctor about increased pressure - not necessarily hydrocephalus, but intracranial hypertension - generalized increased pressure without enlargements of ventricles. we see it in some Chiari patients post op. It can cause severe headaches/vomiting. I have twins as well,one is more affected than the other. An ICP monitor can be placed to check the pressure while she in the hospital. Ask your doc about the possbility.
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Re: Twins with Chiari, decompression surgery done 4/7/10

Postby Catherine » Tue Apr 13, 2010 12:55 pm

We just went through the same thing with my 4 year old. She had decompression surgery on 2/23 and then had to have a tube put in to release the extra fluid that she just couldn't absorb. There are medications that can be given to your daughter to help her absorb the fluids and decrease the ICP. My daughter had terrible reactions to these and the only solutions was to put the drain in. This was not a permanent drain though and she is finally pain free. She still has some nausea but is no longer throwing up and actually went back to school today. I wish you the best of luck. These headaches are just horrible, if she can get past the headaches she'll be okay.

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