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Featured Groups

All Groups (66)

  • Southeast AVM Survivors

    153 members Latest Activity: 16 hours ago

    This group is for AVM Survivor members who live in the Southeast ... for sharing, support and occassional get-togethers.

  • Active Community Moderators

    11 members Latest Activity: 12 hours ago

    This group is for moderators to discuss community management topics.

  • CM-AVM

    14 members Latest Activity: Apr 29

    Started a group because my son was recently diagnosed with CM-AVM. Please join so we can share stories, treatment options, and support.

  • Facial (or Head/Neck) AVMs

    89 members Latest Activity: on Monday

    For anyone who has a facial, head, or neck avm or wants to learn more about them.

  • Mid-West AVMers

    129 members Latest Activity: May 8

    This group is for all of us in the Mid-West.

  • Mindfulness/Relaxation Techniques

    5 members Latest Activity: Feb 21

    This group is for discussing and sharing mindfulness, breathing, or relaxation techniques helpful for coping with AVM stressors and chronic…


    44 members Latest Activity: on Tuesday

    New group linking anyone with DVAF's
    Set up by Vin Frm VinandOmi who has a Type 3 DVAF

  • Gastrointestinal AVMs

    21 members Latest Activity: Apr 19

    I am looking for others with bleeding stomach and intestinal AVMs. Mine has been particularly bad this last year. Had 20 cauterized only to have…

  • AVM Presenting with Trigeminal Neuralgia

    6 members Latest Activity: Oct 10, 2014

    For those who have been diagnosed with AVM and trigeminal neuralgia to discuss treatment options and to get support

  • PETS

    39 members Latest Activity: May 2

    "Pets enrich our lives!" said one AVM Survivor.

    From the scaly ones to the furry ones, that goldfish in a bowl to a majestic…

  • Affirmations and Quotes

    17 members Latest Activity: Mar 16

    Share Affirmations and Quotes that help you keep on!

  • Spanish AVM

    20 members Latest Activity: Apr 16 My niece is spanish and she had a bleeding 7/13/10 - She had AVM waiting for another angiogram - is not a lot information in spanish I'm her aunt and…

  • cowden syndrome

    3 members Latest Activity: Jul 3, 2014

    Hello everyone.. I was recently diagnosed with cowden and have a brain AVM and leg AVM.. Id like to connect with others that also have the same…


    41 members Latest Activity: May 10

    Long Term survivors

  • Coping with Headaches

    77 members Latest Activity: May 14

    Please share your strategies for coping with headaches. Which medications have worked for you? Have you tried cold packs, relaxation techniques…

  • People in their early 20's

    78 members Latest Activity: May 14

    This is for the people in their early 20's to connect and share their stories and all around just chat.

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Blog Posts


Posted by Lori on May 14, 2015 at 1:08am 15 Comments

Yesterday (05/13/15) I went back to Omaha to have an MRI. The doctor said while it has shrunk some it is still there & he also sees some shadows. I will be going back in August or September for another angiogram & possibly more radiation.…


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