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 3:06 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

Re: Basilar Invagination

Postby sydney'smom » Tue Jul 20, 2010 10:36 am

Julie:

Welcome! You will find this site very informative. As for the search option- when you pull up the forum that you want to search, in the uppper right hand corner there is a search button that allows you to search for certain words within the messages on that board. I have found it to be very helpful when I need an answer and do not want to post my question.

Where are you located? We live in Ohio and I know of a few good doctor's within driving distance from here. We are very blessed to have PPO insurance at the most reasonable rate I've ever seen, but my in-laws have HMO and I know it can get a little sticky. If you could tell me where you are maybe I could provide you with the name of some doctors that you can look for on your list of providers.

My daughter is 10 and was dx in January 2010 with a 19mm Chiari and has also formed a Syrinx. We have an MRI scheuduled for September and depending on the growth of the Syrinx she is probably looking at surgery before the end of the year. It is such a struggle to watch your child have to deal with something like this. It breaks my heart to think of her having the surgery and all the struggles she will have with recovery.

Best of luck to you and your family. I hope to hear from you soon.
9 yr old daughter with 19mm CM and 1mm Syrinx.
See Dr. Di at Cleveland Clinic and am scheduling a 2nd opinion with Dr. Frim in Chicago.
sydney'smom
 
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Re: Basilar Invagination

Postby CamsmomKelly » Tue Jul 20, 2010 9:21 pm

Hello Sydney and Julie,
See my signature I have been thru it all,well not all soon to go thru the scoliosis surgery if there is anything you need to talk about IM here or PM me... Julie it looks like you have tripletts and only one child has chiari/sm? I also consulted with Dr Frim but I didnt end up using him as a surgeon he is supposed to be a top chiari expert.:)
Kelly
mom of Cameren 11 yrs. old
Chiari,retroflex odontoid,syringomyelia,scoliosis
Chiari decompressions 6/2005,5/2006
Syringopleural shunt 6/2009
Boston Braced off & on 6.5yrs
scliosis surgery- soon
CamsmomKelly
 
Posts: 46
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Location: Hazelwood Missouri

Re: Basilar Invagination

Postby julieplus3 » Fri Jul 23, 2010 7:11 pm

Thanks for your replies ladies. I live in southern California, the San Diego area. My daughter has been diag. with syringomyelia since age 2, and I've been on and off these forums and others. Because we've been 'status-quo' for quite some time, I haven't been active much. But with the final confirmation of BI diagnosis (which I've suspected for years!) I wanted to look more into that. I also wanted to get statistics from my local nsg - how often he's dealt with this. How do you do that, just call the office and ask? Something I should have done a while ago.
julieplus3
 
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Re: Basilar Invagination

Postby Catherine » Thu Jul 29, 2010 7:09 pm

Hi, I'm a little late in replying. My Daughter was decompressed by Dr. Loudon in Orange County. He works with Dr. Muhonen and I've spoken with him a couple of times during our stay at CHOC, she was a very difficult case so Dr. Loudon consulted with Dr. Muhonen several times about her case. I wouldn't hesitate to have Dr. Muhonen operate on my daughter. Just my thoughts. Good luck in your search.

Crystal
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