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  #1  
Old 07-06-2012, 09:11 PM
mom s mom s is offline
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Default VM and Dr. Levitin

hello, we are scheduled to go and see Dr. Levitin for surgery for my daughter who has a VM on her right cheek and lower lip in a few weeks. I was hoping maybe someone could share their story about Dr. Levitin and if you were happy with how things went and where you are now. Being that it is getting closer I am freaking out a little bit, but I know it is the right thing to do for our daughter.

I am also struggling with insurance and what will be covered. Dr. Levitin's part will be but she will also be having sclerothearapy injections first by Dr. Niimi and this part will not be covered. Does any know about insurance and how I can go about getting this part covered as well??

Thank you in advance for any advice and sharing of stories
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  #2  
Old 07-06-2012, 11:11 PM
dancermom dancermom is offline
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Hi, mom, you may want to visit AVMSurvivors. There are over 100 members there with AVMs or VMs of the head and neck. I have heard good things about Levitin. My son's AVM was removed by Dr. Suen. I would hope that the doctors would be writing letters to your insurance company about why the sclerotherapy is not optional and should be covered. Insurance companies have very limited knowledge of AVMs, so the docs usuallly have to go to bat for patients to get the proper coverage. Best wishes for your daughter!
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Old 07-06-2012, 11:53 PM
mom s mom s is offline
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Thank you dancermom for responding. I have been to the AVMSurvivors website and find it quite confusing to navigate I will have to keep trying on there. Thanks for the advice about insurance. I am making sure that the current doctors we see send a referral note to our insurance as well and hope that helps too.
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Old 07-07-2012, 04:14 AM
missy missy is offline
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Hi,

If you go to http://birthmark.org/experts.php we have an insurance expert, Basia, who may be able to help you.

Missy
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  #5  
Old 07-07-2012, 12:46 PM
abatie abatie is offline
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Insurance is always a big fight. My family has had an easier time now but when my daughter was first diagnosed with CMTC we had a tons of issues. Claims would come back saying it wasn't covered because it isn't a test run on babies and stuff like that. It helps when your insurance company finally gets the file right. Ours finally flagged Becca's that there were tests run that we're not standard on an infant. Try to contact your insurance company and get a case manager. Then every time you call you are talking to the same person.
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  #6  
Old 07-08-2012, 12:26 AM
dancermom dancermom is offline
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Default Extremity AVM group

If you go to AVMSurvivors, I will welcome you and help you navigate the site. The sub-group to join is Extremity AVMs. I read all the discussions there and can help you connect with the members who can help.
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  #7  
Old 07-09-2012, 11:08 AM
mom s mom s is offline
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Thank you so much Missy! I will give it a try

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Originally Posted by missy View Post
Hi,

If you go to http://birthmark.org/experts.php we have an insurance expert, Basia, who may be able to help you.

Missy
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  #8  
Old 07-09-2012, 11:09 AM
mom s mom s is offline
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Thank you dancermom, I will join that group!

Quote:
Originally Posted by dancermom View Post
If you go to AVMSurvivors, I will welcome you and help you navigate the site. The sub-group to join is Extremity AVMs. I read all the discussions there and can help you connect with the members who can help.
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