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

  • Post op symptoms
    by Krisie on March 4, 2024

    I had surgery for Removal 2/7/24. Ever since my entire left side of my body face to toes, has been asleep. Like if you sit on your foot too long and it tingles and is asleep. But it’s my entire left side, with no relief, it just stays asleep. Has anyone else experienced or heard of this. Will it wake up? 1 post – 1 participant Read full topic

  • More about my son
    by Simba900 on March 2, 2024

    Back in 2020, my son had a massive bleed and swelling on the brain. Every time he has a rapture the blood goes right down to the brain stem, so that damaged alot of his mobility. He woke up one morning couldn’t walk, he been in a wheelchair ever since. He has no strength in his left arm and hand , he can’t lift it up,his right hand has lost alot of strength, he can’t hold things very good anymore. He has trouble feeding himself, he […]

  • My son’s AVM is really bad the worst
    by Simba900 on March 1, 2024

    My son has lost so much strength in his whole body. He’s doesn’t seem like the same person anymore, he has inappropriate behavior , the tnings he say is so embarrassing. He is restricted to the wheelchair. I feel like I’m all alone. My son is in a long term care home, he doesn’t like it, wants live back in the community, i feel where he is is much better for him, nurses and doctors are all there, how can i convince him he needs to stay […]

  • Removing scar tissue from avm brain surgery
    by BLESSING on March 1, 2024

    Has anyone had to have scar tissue removed on brain from avm surgery? 8 posts – 5 participants Read full topic

  • Staged gamma knife help
    by Jenny24 on February 24, 2024

    Hi everyone, My husband has a large unruptured grade 5 AVM which was diagnosed when he was 11 (he’s now 37) due to sensory sensations down his right side. For years, neurosurgeons have recommended monitoring only as the risks of treating are very high so he has learned to live with it. He is largely symptom free but has had 4 seizures which are well controlled with medication. However, we recently had a consultation with the Sheffield centre […]

  • Welcome February Members!
    by jamiee on February 22, 2024

    Hello everyone! I hope you are all having a wonderful month so far. I am excited to see all of the new activity and discussions between members over the last month. I would like to take some time to introduce and welcome our new members. @AlisonO is from Northern California, U.S. and has shared some information on her daughter with an inoperable AVM, who has experienced her first ever tonic-clonic seizure. I believe that our AVM members can […]

  • Facial spasms after cyberknife
    by Lucy on February 22, 2024

    Hello all! I was diagnosed with a left occipital lobe AVM and after five embozilatios, that shrinked it but didn’t obliterate it, I had cyberknife in November 2023. Since the beginning of this month I’ve been experiencing very frequent involuntary spasms on the left side of my face. They are quite annoying since they last some time. The radiation therapist who performed the cyberknife doesn’t think they are related to the cyber knife or […]

  • Update – Surgery Offered After Failed Gamma Knife
    by Indalo on February 21, 2024

    Hi all, I’m 46 and five years ago I was diagnosed with a right occipital AVM after a bleed from which I made an excellent recovery, with some lower left visual field loss. I probably had a small bleed when I was 20 but didn’t go to hospital. My AVM is SM3/4 with a large varix. My neurosurgeon’s opinion in 2019 was that it is a difficult surgical target, but a good candidate for gamma knife. I was treated at Sheffield with 25gy marginal […]

  • Eye sensitivity from avm removal which led to epilepsy
    by BLESSING on February 20, 2024

    I am trying to get some advice for a type of shades to help me to try to get my life back on track. Sunlight and strobe light effect like going through trees. Anyone have any advice? 4 posts – 2 participants Read full topic

  • Can an AVM develop from a low flow malformation?
    by sudek on February 19, 2024

    All my life, I have always been diagnosed with a mixed low flow malformation of the neck and head, and I have already undergone several angio, MR and sono.The last fourth angio where I had low flow was done 10 years ago.Just a few months ago, I had a detailed MR and sono and I was clearly diagnosed with low flow without clear signs of high flow. Two month ago For the first time I had a series of spontaneous bleedings from the mouth, by chance […]