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

  • So much grief
    by Breezy on May 27, 2023

    Hello, I’m a new member and need to vent. Brief history… I had stents placed in my left transverse and sigmoid sinus’ Oct ‘19, prior to that I spent almost 10 years dealing with neurological problems and trying to find a doctor that could help me. I had multiple doctors, after multiple imaging and procedures, tell me nothing is wrong and to see a psychiatrist. After my surgery I thought my life would completely turn around and everything […]

  • Nidal Varix
    by Jaxx on May 27, 2023

    Hi all, Can anyone tell me what Nidal Varix means in relation to a cerebral AVM? 5 posts – 3 participants Read full topic

  • CT Angiogram Findings
    by Jessica12 on May 26, 2023

    I am 6 months post removal of my right frontal AVM. I had a CT angiogram on Monday and just got the results back. This isn’t my first one but I’m confused my the results and hoped someone more medically inclined could help interpret. I’m still about 2 weeks till my next check in and can’t wait that long to know. The first weird thing is that for every artery it says normal in caliber except for this: Anterior Cerebral Artery: A1 […]

  • Wow that was a miracle 😳
    by Alison on May 23, 2023

    Finally create topic is still around. I haven’t seen it for a while. Sad thing is I will forget where this was, thanks to my wonderful avm. Want I want to know now is how do I reject my badges and all that? Also is there another site about Avms anywhere online? 3 posts – 3 participants Read full topic

  • Bleeding Ears
    by Alison on May 23, 2023

    Does Anyone Know If Bleeding From The Ears Is Normal For All Avm Patients? 5 posts – 4 participants Read full topic

  • Sport with Vessel Clips
    by Goldmund on May 23, 2023

    Hi everyone! I’m Christian from Germany. On 08th of December 2021 my AVM ruptured. It sat just under my right occipital lobe. After quite a struggle to be taken serious by the doctors, I was finally treated with an initial embolization and a follow up surgery in which they removed the AVM entirely and shut the remaining normal vessels via vessel clips. When I was laying on ICU the chief neurologist came to give a visit. I’ve never seen him […]

  • Anyone else have this problem at work?
    by annawinter2000 on May 20, 2023

    Hello, My name is Anna, and I just made an account. I had an AVM rupture when I was 17, and had it surgically removed. Although I went through intensive physical and speech therapy, my right side is numb and I have a speech disability (speech apraxia I think?). I am now 22 and just started working. However, my physical and speech disability affects my work performance. For example, I can’t talk on the phone or to my colleagues without […]

  • Gamma knife
    by Ally6672 on May 19, 2023

    Continuing the discussion from General help: I have a few questions if any of you lovely people can help 1 since leaving hospital and what seems like a never ending weight for a date to have gamma knife in Sheffield how much can I exercise my avm bleed was deep in the left side of my brain and grade 3/4 and has messed with my right hand side with regards balance walking eye sight but I want to keep fit so any help there greatly received 2 re the […]

  • General help
    by Ally6672 on May 13, 2023

    Hello everyone My name is Alice and on the 26/27 January this year my avm bleed I didn’t even know I had one until then.since then my right side has become week my eye sight again on right side is bad and my short term memory is a joke and I feel I live off pain relief I am waiting to have gamma knife surgery in Sheffield I was wondering if any of you could help by letting me know what to expect next I’m 50 years old Avm is grade 3/4 deep in […]

  • Does it get better?
    by Jade05 on May 12, 2023

    I am about 4 months post occipital lobe rupture. I have poor recollection of my time after the rupture and in the ICU. My memories stop right before the rupture and began to build more consistently when I came home from the hospital. My vision has improved significantly though I have some central vision loss, peripheral vision loss, and upper corner loss. It seems like as the days go by, the peripheral vision gets better. Central vision slowly […]