Anyone with an ear or other non-brain AVM in Iowa?

Hi, I just wondered if there are any other AVM people in Iowa I could chat with. I feel pretty isolated because I really don’t know anybody else with the same thing as I have. I would like to hear from other ear/head non-brain AVMs anywhere. Thanks, Kim

We have a new "diagnosis" for my daughter--AVM in her ear. I'm not in Iowa, but in Texas. had to reply just because I'm also hoping to connect with other's who have AVMs in ear--I've been told it's so rare. I haven't met with my daughter's team of doctor's yet since the arteriogram last week, (and just found this support group), so I have no further specifics regarding the AVM until our 1st appointment in late July. At the time of diagnosis, my daughter was 6 months old. But she was very obviously born with the AVM, which was misdiagnosed as a Port Wine Stain. At the time of birth, the affected ear was noticably larger, thicker and very red. By age 2 months, the "port wine stain" covering her ear, scalp and neck, became extremely hot and she pulled on it constantly. When I brought this to the attention of her vascular plastic surgeon who was going to do laser surgery for the port wine stain and the 6 multiple hemangiomas she had on her external body, he felt the ear, and felt a "pulsation," and mentioned the words "AVM possibility" to me for the first time. He said she'd need an MRI to confirm an AVM, but he wanted to wait and do the laser surgery for PWS first. By age 4 months during her pre-op appt for the port wine stain surgery, her ear was worse and she'd developed excema all over the port wine stain area and was bleeding daily. I begged him to go forward with the MRI BEFORE the laser surgery, noting I couldn't find anything about port wine stains being hot or pulsating---he agreed. The MRI at 5 months resulted in mixed results (radiologist said AVM and Director of Radiology for hospital wasn't convinced) and an order for an arteriogram came at 6 months. Last Friday, the Interventional Radiologist delivered the news to me over the phone she has "an AVM in her ear and it's an easy fix, but I won't treat it until she's about 2." Since finding this group--I realize there will most likely be nothing "easy" about fixing the AVM in her ear. During my follow-up call Monday to her vascular plastic surgeon's office to make an appointment to get the details of her "treatment plan," his nurse told me to be "prepared that my daughter might lose her ear and need a prosthetic" and that I wouldn't be able to meet with the doctor until the end of July--so that's where we stand. I'm also looking for other's with AVMs in the ear--Please keep me posted as to your findings. I've read some studies saying there's a better chance of preventing reoccurance of AVMs later in life if ear is amputated--but hoping to hear other stories of success. Thank you so much! Page, Burkley's mom:)

Hey, there are a couple of other sub groups on this site that may also be able to help you
Parents of AVM and also Extremity AVM’s. Just go to the main page click on more then groups. You most likely already know this but saying just encase.

Best of luck

Kia Kaha Taiki

DM