Basilar Invagination

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

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Basilar Invagination

Postby julieplus3 » Sat Jul 17, 2010 3:05 pm

Haven't been able to figure out how to search the forums, as there doesn't seem to be a search box.
I have a daughter who is 12 yrs old, and has basilar invagination as well as syringomyelia, platybasia, congenital scoliosis, as well as a few others. I would love to hear from other families and I know my daughter would love to connect with someone who is dealing with similar issues.
We made a caringbridge website for her, it is http://www.caringbridge.org/visit/cassandraeade.
She has not had surgery so far, and we have been blessed that her symptoms are manageable. I am a bit indecisive about which doctor to officially put as her main doctor for her issues (she sees a local nsg, but I am not feeling secure about him as he always seems to leave me with questions unanswered, including the last time when his office scheduled us too soon and they didn't even have the MRI report to review ... and he just basically said "looks good see you in a couple years" and I didn't get a chance to ask some questions I wanted to) and we have seen Dr. Meneses in Iowa but we have an HMO insurance and anytime we see Dr. Meneses it is costly for us (we've consulted once and seen him once). I have also in the past talked to Dr. Frim, and a Dr. Mulhonen in Orange County. I'm not sure if it is possible to push an HMO insurance to authorize you to see an out-of-state specialist, and once a year we have an option to change to PPO but man is it hugely expensive, and money is tight. Feel like I am inbetween a rock and a hard place, if you know what I mean!

Looking forward to connecting with some of you.
Julie E.
mom of 12 yr old triplets ... pre-teens time 3, yikes!
julieplus3
 
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Joined: Sat Jul 17, 2010 2:37 pm

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