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nastasiawalden 09-06-2012 09:56 AM

I think my son has a VM, pics included. I don't know where to go.
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I think my son has a VM in his mouth. It has been there since he was born. The nurses who attended to him had said something about some bruising from the forceps so I didn't think anything of the purple in his mouth. He also had a small dot on his cheek that was purple. Then when it hadn't gone away by two weeks I asked his doctor about it and she said she thought it was a hemangioma, but thought it was strange that it was inside of his mouth on his left cheek. I noticed it was getting a little bigger and so I started looking online about hemangiomas and found this website, and noticed the slide on venous malformations and thought it looked and sounded more like what is in my sons mouth. I mentioned this to his doctor and she gave us a referral to a dermatologist. I brought this up to her and she completely blew me off. I told her, this thing in his mouth acts more like this, and she did not even respond but instead just started talking about his eczema. Then later started saying that by the time he is 9 the hemangioma should be gone. So she didn't even talk to me about it. I have written an email to the doctor in New York on Monday, so I am hoping I hear from him soon. I live in Alaska and if Gabriel needs any treatment it will have to be done in Seattle. I just want to know if I am just being a crazy mom or if I should keep pushing for someone to really look at it......
(I think I added the photos right :p ) Thank you for your input!

dancermom 09-07-2012 08:00 PM

Nastasia, it does look like a VM to me. A dermatologist is not an appropriate person for this -- do not let them attempt laser, as it will make aggravate the VM. Even if it were a hemangioma, it is somewhat ignorant to assume that it would disappear on its own. Unfortunately, very few doctors have the expertise necessary to treat AVMs or VMs successfully, and you have to be very careful who you entrust your child to, because a lot of doctors have read an article or two and are quite willing to experiment on your child while providing sub-optimal solutions. So, saying it will have to be done in Seattle is the wrong approach. You might be able to cure the VM with a single surgery, if the right surgeon is chosen, or you might pick a convenient doctor in Seattle and wind up receiving dozens of unsuccessful treatments over a course of years. If your child is still an infant, it may be recommended that you wait a couple of years until he can tolerate procedures better. That is okay -- treatments will be advancing over the next couple of years, and that may be to your son's benefit. Anyone who wants you to wait and see indefinitely, though, and especially to wait through puberty, is someone who doesn't understand these malformations.

I strongly encourage you to join, where there are over 150 members with facial, head, and neck AVMs or VMs. I recently posted a resource list there of recommended doctors for facial AVMs/VMs. If you join, I will help you navigate the site. Best wishes to you and your son!

nastasiawalden 09-08-2012 01:59 AM

Thank you for your reply! It makes me feel better knowing that you also think it looks like a VM. Yes Gabriel will be 4 months old on the 17th, so I know that if we were to go for treatment it probably wouldn't be until he was older. I really just want confirmation about this. I am going to try and write the Dr. Levitin again because I didn't get a reply back, maybe if I can get his opinion I could give it to his doctor and get Gabriel seen by someone familiar with VM's. Thank you again for your opinion! Also, I did sent in a registration request for the AVMSurvivors website.

ash2887 09-12-2012 02:15 AM

Have you only written Dr. Levitin? Maybe try some of the other ask the experts.
Let us know how it goes! I am very curious on the process people go through to have a VM diagnosed correctly. It's very difficult. You have to find a doctor who has experience with these, otherwise it will be a nightmare!

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