Welcome Members of AVM Survivors!

Welcome to AVM Survivors Patients Support Community!

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

This is an online support group for patients, friends and families affected by AVM.

An AVM (or arteriovenous malformation) is a congenital defect in the circulatory system, a malformation between an artery (or arteries) and a vein (or veins). There are other types of vascular anomalies that are similar to AVMs, such as cavernous malformations (CMs), venous malformations (VMs), or developmental venous anomalies (DVAs). If you have any of these, you are more than welcome here. If you have an aneurysm, you may wish to join our aneurysm community.

Some AVMs are hereditary, due to genetic conditions such as CM/AVM, HHT or Cowden Syndrome, and Cavernous malformations may also run in families. It is possible that all AVMs are due to genetic or inheritable factors – we don’t really know yet.

AVMSurvivors.org is a virtual peer-to-peer community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.

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How is Ben’s Friends Different from Social Media and Other Support Sites?

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together.. 

Ben’s Friends: Safe and Supportive. 
And anonymous to keep it that way.

Why create an account?

Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:

Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.  

Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.

Click here to create an account and join.

Latest Discussions

  • AVM Rupture
    by Peachyfelly on November 30, 2023

    My mom was found on the floor of her room after a few minutes of we assume of the rupture. We called 911 and she was able to give them her name and date of birth by the time we got to the hospital she was no longer talking. We assumed it was a stomach bug because she was found with throw up. Only to be told by kaiser after a CT they’re showing a brain bleed so we figured she hit her head after fainting but it was the AVM They said they […]

  • From embolization to Kilimanjaro
    by Bargeron on November 30, 2023

    Short story version: Brain bleed in May 2022. Diagnosis of AVM/AVF in July 2022 followed by embolization in Sep 2022. Until that point, I’d never heard of an AVM. But needed to learn much and quickly. One of the biggest learnings was how to exhibit patience between medical appointments and procedures. All went well and in August of 2023, my wife and I summited Mt. Kilimanjaro in Tanzania. My story is on Medium in more detail and I pray it […]

  • AVM in forearm fracture
    by Pittypat on November 29, 2023

    Hello everyone, I’m Patricia. I was diagnosed in 1968 with my AVM. At that time, it was leave it alone. If they did surgery I could lose the use of my arm or hand or both or the AVM could come back. When I was 19, I started birth control pills. My arm became red, hot , swollen & I could not stand for anyone to touch it. I was told by a physician to try baby aspirin. Well that worked & ever since then when I have a flare up, I use the […]

  • My Nerves! Surgery wait
    by Phoenix on November 28, 2023

    Anxiety is getting the best of me! I saw my Neurosurgeon on Nov.2, and we agreed on embolization and surgery to remove my AVM. He said it will happen within 4-6 weeks, with only 2-3 days notice! Well here we are Nov. 28 and still no admission date. The wait for an admission date is more difficult than the the actual surgery for me🥴 My admission date could easily be this week and I don’t even know yet. Deep breaths lol 5 posts – […]

  • My Sister
    by afabarbosa on November 27, 2023

    Hello everybody! Yes, we are going through a very difficult time. On November 11th, my sister, 41 years old, had a severe cerebral hemorrhage while undergoing curettage due to a spontaneous abortion. Luckily for us, she was in a reference hospital in our city and was promptly attended to, undergoing emergency surgery (craniotomy). After the surgery she was kept in an induced coma for three days and after removing the sedation she took another 7 […]

  • November 27 – New Member Introductions
    by AndrewP on November 27, 2023

    Hi everyone! I want to welcome some of the new members who have recently joined our AVM support community. From Oregon, US is @Faye! Faye was diagnosed with a level 5 AVM deep in her brain in August 2009, after a bleed, and has also experienced several aneurysms related to the AVM. Interestingly, Faye runs an ornamental garden design and maintenance business. Just south of Oregon, we have @Cherylashby1 from California, US! Cheryl just […]

  • Cyber knife
    by bettybo on November 27, 2023

    Hello everyone i’m new here and so glad to find you!My avm ruptured 15 September 2023,two months ago and that’s how i found out i have one.I was hospitalised and tried embolization but unsuccessfully.I don’t know the exact size they told me it’s small,in the left side center of my brain.(i have all the info on cd but not available cd player).I have scheduled cyber knife in 15 of December.Im so scared though, i m hearing about swelling,or […]

  • Birthmark
    by Sarah26 on November 27, 2023

    I was wondering if I should mention this birthmark? /spot I had when I was a baby to the neuro surgeon. My brain avm is on the right side of my brain and this spot was on the left. 5 posts – 3 participants Read full topic

  • Spasticity
    by Zadeed on November 26, 2023

    Just a simple question about spasticity and if it ever goes back to normal and if so how long it took. 6 posts – 5 participants Read full topic

  • Side Effects of Gamma Knife: My Experience
    by eternalsunshine on November 22, 2023

    Hello all. As with all medical procedures/surgeries, gamma-knife or stereotactic surgery can cause side effects. It’s my belief that the more information we have, the better able we are to make an informed decision, the better able we are to ask the pertinent questions of our Consultants to help us decide. I would like to let you know the following: Post surgery I have experienced so much improvement in painful and debilitating hemiplegic […]