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Joined: Feb 2006
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Lynn_B Offline OP
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Our son's visit with the neurosurgeon today went well. She measured (and had a colleague verify) only an 8 mm herniation (not a 10 mm herniation as the radiologists suggested). She also feels that he's mostly asymptomatic; though his headaches could be partially from the Chiari (she feels they're mostly migraine type). She saw fluid flow on both sides of the cord--though she did say it was crowded. She is scheduling a Cine MRI to measure flow and check for Syrinx; but, isn't in any rush to get this done. She also doesn't feel that his absence like episodes stem from the Chiari; instead she feels they're some sort of seizure.

As for the Asperger's, she said she sees many children who have both Asperger's or Autism as well as asperger like or autism like symptoms as well as the Chiari. Her feeling is that one magnifies the symptoms of the others. But, she feels our son is textbook Asperger; and, if we do have surgery at some point in the future, its likely we won't see a change in behavior or cognition.

For now, its monthly follow-ups with the neurologist and 6 month follow-ups with the neurosurgeon; with MRIs at 6 month intervals (assuming nothing shows up on the Cine). Any decision for surgery will be tempered by whether there is a syrinx (a pocket of spinal fluid) along the cord, whether the tonsils drop down further later, whether his symptoms multiply or worsen, and whether or not he begins to exhibit nerve damage. It's a situation few children actually resolve through growth (though some never experience any additional symptoms); and he'll be a long-term neuro patient needing close monitoring.

Yes, a lot can go wrong; but, the surgery is fairly common now (not that its any easier or less risky). Thankfully, we're with one of the top rated neuro surgeons in the US. If we have to go this route to temper nerve damage at some point in the future; we're in good hands.

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Thanks for the follow up Lynn on your son. I never heard of Chiari before. How did your son handle the MRI and the tests?


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Lynn_B Offline OP
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Preston had to be completely sedated (IV sedation--totally out) for the MRI. There's no way he could have handled it without the sedation. White coat anxiety added to sensory overload from the noise and then claustrophobia issues on top of all of that made it absolutely impossible to do--even with mild oral sedation (they gave him Xanax the first time out--big mistake). Maybe by the time we're on our 3rd or 4th MRI, he'll be able to handle it with just a mild oral sedative.

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those "mild" sedatives and anti-depressants are the meds that send Michael completely off the deepend. He goes psychiotic if they try to slightly sedate him. It is either all or nothing, otherwise he will tear a room apart.

Some children's mri'S play movies while they are doing the test which help keep the little ones entertained. Maybe you can ask aboutbthis?


Michelle Taylor
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Lynn_B Offline OP
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Hid dentist uses an oral sedative (and movies) for any dental work (and it works). I think it may just be the kind of sedative they administer; and maybe its just the MRI is so much louder and such an enclosed space. They can't do open-sided (here, that's the only one they have with movies)--supposedly because they need greater detail than that kind of machine can give. The next one has to be done at the children's hospital here; and they'll knock him out again. Thankfully we can space these out some.

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Lynn_B Offline OP
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Here's an update on the kiddo. He's going to have something called posterior fossa decompression in late summer (at its simplest, removing a piece of the skull to make more space for the brain, can include other lovely things too, but that's the simple version).

He's put together a website hosted by Caring Bridge, a non-profit organization that helps kids with medical challenge stay in touch with family and friends. You can find his site online at http://www.caringbridge.org/visit/prestonbyrne - pleast stop in and leave a comment. Buidling this and trying to pull together a community of support is part of the "path to wellness" he and his psychotherapist have worked out.

More as time goes on!

Lynn Byrne

Last edited by Lynn_B; 03/25/09 02:29 PM.

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