Off to see NSG again!

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

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Off to see NSG again!

Postby TiredMom » Mon Jul 06, 2009 8:27 am

We're off to see Dr. George in Austin this morning. Who knows if anything will change on the surgery front or not. More later!
Mom of 9 yo boy with Chiari I, Pineal Cyst, Microdup. Synd. 15q, Mito. Disorder, Ctrll. Sleep Apnea/Sleep Mvmt. Disorder, Asperger's, Hypotonia, Aphasia, GAD, OCD, occipital headaches, etc. Visit at http://caringbridge.org/visit/prestonbyrne
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Re: Off to see NSG again!

Postby youngwife » Mon Jul 06, 2009 9:02 am

I pray it goes well. Let us know! :|
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Re: Off to see NSG again!

Postby lttutrow » Mon Jul 06, 2009 9:50 am

I've been thinking about you all, hope it goes well, keep us posted!!
Lori
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Re: Off to see NSG again!

Postby TiredMom » Tue Jul 07, 2009 1:15 pm

Well, surgery is off for now. Dr. George feels now that our success rate with decompression, given Preston's current status, would not be about 60 %. That makes the surgery "optional." We'll re-evaluate in 6 months. In the meantime, we're going to try Pres on a 3 month run of Periactin to see if it has any impact on his headaches. Life goes on...
Mom of 9 yo boy with Chiari I, Pineal Cyst, Microdup. Synd. 15q, Mito. Disorder, Ctrll. Sleep Apnea/Sleep Mvmt. Disorder, Asperger's, Hypotonia, Aphasia, GAD, OCD, occipital headaches, etc. Visit at http://caringbridge.org/visit/prestonbyrne
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Re: Off to see NSG again!

Postby lttutrow » Tue Jul 07, 2009 9:14 pm

I hope Periactin works well for him and stops the stinky head pain!! I'm curious why he thinks only about 60% chance of improvement in symptoms?
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Re: Off to see NSG again!

Postby TiredMom » Wed Jul 08, 2009 10:15 am

Dr. George's view of succes at this point has a lot to do with the decrease in headaches we've managed to achieve with just changes in activities/level of activity. Unfortunately, the negative impact this has on Preston's overall quality of life doesn't play a huge role in his recommendation. He's looking at it from a medical standpoint. The surgery isn't medically necessary at this point as many of his physical issues have abated with modifications. Its optional. So we have to think, what will surgery really do for us? Its very likely Pres will still have issues with headache afterwards. Will performing the surgery improve his outlook? Eh. Things could change later as he grows or if he has another "flare."
Mom of 9 yo boy with Chiari I, Pineal Cyst, Microdup. Synd. 15q, Mito. Disorder, Ctrll. Sleep Apnea/Sleep Mvmt. Disorder, Asperger's, Hypotonia, Aphasia, GAD, OCD, occipital headaches, etc. Visit at http://caringbridge.org/visit/prestonbyrne
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Re: Off to see NSG again!

Postby nomadmom » Wed Jul 08, 2009 10:04 pm

I was just curious about his activity modification? The reason why my Son had the surgery is because he couldn't do any activity without bringing on a headache. The neurosurgeon felt like it was a quality of life issue-as did my Son. His chiari was 7mm, she didn't think the size was impressive, so she was ruling on quality of life. When she got in there, she said we made the right decision, his cerebral tonsills were completely compressed. She said she'd never seen tonsills that compressed before. It's only been a month since the surgery, but he's doing well. He's getting "little" headaches that are nothing compared to the chiari headaches, but the doc feels like these are brain surgery headaches which will disappear after he's done recovering.

Anyway it's good to see your updates and I am glad your Son is getting some relief from the headaches!

Gabrielle
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Re: Off to see NSG again!

Postby TiredMom » Thu Jul 09, 2009 8:44 am

Right now Preston's restrictions are: no lifting more than 10 lbs., no contact sports, no excessive bending, no inverted activities, and no activities which require hyperextension of the neck/head. Beyond that, its up to him what he wants to do now. He won't, on his own, do any activities that require jumping as that typically results in a 2-day headache (needless to say he wasn't happy that the nurse practitioner had him hopping around the office on one foot to test balance/coordination--headache ended the next day). The hope is that Periactin, or some other med, will have an impact on serotonin levels and allow Pres to tolerate a little more activity. If not, as I said, we re-evaluate in January. We can still pick up our option.
Mom of 9 yo boy with Chiari I, Pineal Cyst, Microdup. Synd. 15q, Mito. Disorder, Ctrll. Sleep Apnea/Sleep Mvmt. Disorder, Asperger's, Hypotonia, Aphasia, GAD, OCD, occipital headaches, etc. Visit at http://caringbridge.org/visit/prestonbyrne
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