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abatie 12-19-2009 12:34 AM

Any Advice Welcome
Today we went to the dermatologist that diagnosed my daughter's CMTC. He wants her to be seen by a pediatric vascular specialist, pediatric dermatologist, pediatric orthopedic specialist,and radiology. We are not sure what to do now because the only pediatric dermatologist isn't located near the clinic that he thinks we should go to for everything.

He is recommending Vascular Anomalies Center at Children's Hospital at the University of Minnesota. Does anyone know anything about this place? He didn't know anything about it and hadn't sent any patients there. He just thought that their services were probably the best fit for our needs as a family in relationship to living in South Dakota.

He said we could also go to Rochester but from what he knew they didn't have a pediatric vascular specialist. Does anyone know anything about services available in Rochester.

He also told us to get ready for a fight with insurance. He said they aren't going to want to pay for any of this. I have already fought with them for just about every test she has had run.


missy 12-19-2009 06:16 PM

Corinne might (does) know more about the different centers, so I will drop her an email to make sure she sees your post.

Also, get in touch with Basia for help with insurance issues.


nickbar 12-20-2009 05:04 PM

Please email me directly for help. I need a bit more info and we can see what options are out there.

abatie 01-04-2010 03:01 AM

An update on Becca-We are now waiting for the schedule of appointments for her. We will be going to the Gonda Vascular Center at Mayo in Rochester. I will update when we know when we are going and what we find out. Right now insurance is on board which is a relief.

missy 01-04-2010 12:16 PM

YAY!! Please keep us updated. So glad your insurance co is not giving you troubles!


kristinagriffing 01-05-2010 09:35 PM

So glad to hear you have a plan! Good Luck and please keep us posted!

abatie 01-05-2010 11:39 PM

Frustration has hit again. We have an appointment scheduled at Mayo but only with the pediatric dermatologist. That wasn't what we had requested. So we are going to make a 9 hour trip for one doctor and it isn't even the doctor that we thought we needed to see the worst. Based on what our dermatologist told them that is what they decided. We go on the 13th of Jan. I am hoping that we will get there and she will realize that we need to see the other specialists and figure out a way to make it work or we will be turning around and going back.

missy 01-06-2010 12:32 AM

I will be saying prayers and keeping my fingers crossed for you next week!


abatie 01-14-2010 02:30 AM

Becca's update-Becca's CMTC diagnosis was reconfirmed today. Her thyroid was rechecked. Tomorrow she is being tested or Glaucoma. On Friday she is having an electrocardiogram done. They are also trying to get us in to see a medical specialist that works with patients with multiple medical needs but I doubt it will happen since his first available appointment is April 13. Our new doctor is great! Becca will come back to Mayo in 6 months to deal with the leg length issues because they need to see if she has the strength to stand/walk when it is developmentally appropriate.

missy 01-14-2010 12:15 PM

Thanks for the update! How are you holding up?


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