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.
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
- Auricular AVMby TVan on September 19, 2023
Hey, I’m new here and only recently got accepted into an AVM Clinic/Treatment Centre. My auricular AVM was not too much of an issue from birth until my twenties, mainly it was just annoying to look at. Since I was 24, and for the last five years, my AVM developed into what it is now—something that has altered many things in my life to a significant degree. After years of unhelpful ER visits, bouncing back and forth to many unrelated […]
- More Surgery on the horizonby ModSupport on September 16, 2023
This is Merl from the Modsupport Team. I’ve had a couple of members ask how my health is going and @DickD suggested I start a new topic. As I’m sure others have seen over the years, I’ve been on a bit of a rollercoaster and although not AVM related it is neuro related. My last major neurosurgical procedure was in ’13, that year I had 3 operations and although the procedures did deal with/manage a situation, each has left me that little bit […]
- Gliotic changes and AVMby eternalsunshine on September 13, 2023
Hi all Has anyone experienced gliotic changes alongside their treated AVM? Just had a letter today confirming I have these changes. This is 3 and a half years AVM diagnosis and a couple of years post embo and GK. I was hospitalised in 2020 with a suspected stroke when was dx seizure but no one really explained what kind and I wasn’t treated for that. But it was then they found the AVM and I think they put everything down to that. However in […]
- Pelvic AVM embolizationby lulahs on September 12, 2023
I was diagnosed with a 7 cm pelvic AVM in 2016. Two Oakland specialists and two San Rafael specialist said they wouldn’t do surgery as it’s too complicated and dangerous. I finally found an Interventional Radiologist in Roseville who looked at the AVM in June 2023 and successfully operated with embolization 8/25/23. The AVM is now 1 cm. With coils etc preventing growth hopefully. I did develop an adjacent blood clot which is being treated […]
- Started Avastinby bms9522 on September 9, 2023
Hello everyone! For a quick recap of my experience, I was diagnosed with a grade 3 AVM in my left parieto-occiptal lobe early last year, and went through GKR last August. Since May of this year, I’ve been dealing with brain swelling and radiation necrosis, and have been on decadron that hasn’t seemed to be helping. I’m battling some vision loss in my right field of vision, as well as weakness in my right arm. Anyway, last week I was able […]
- Tired of itby Longtermsurvivor2457 on September 7, 2023
How do you guys cope with an AVM. I get tired of having to deal with it. Mine dose not cause a lot of long term symptoms but I do worry about it growing often or needing further treatment for it because it’s been stable for a while. I have an MRI coming up in October so I’ll know how it’s looking then but until then it’s tough wondering and having no way of knowing for sure what’s going to happen. 9 posts – 9 participants […]
- Specialist about brain AVM, pregnancy, delivery and medically assisted reproductionby chm on September 4, 2023
Hello, I am looking for a name of specialist who could answer some questions about brain AVM, pregnancy, delivery and medically assisted reproduction. I had a brain bleed due to an AVM when I was 18 years old, I got an 80% embolization, angiography showing that the AVM had disappeared, then suddenly an angiography showing that the AVM had regrow, then it was removed by surgery. My last control (5 years ago) showed no AVM anymore. Today I would […]
- How to get insurance coverage?by kitsune on August 25, 2023
Hi, everyone, I live in Texas and I plan to get another round of proton radiotherapy in Mass General Hospital, but I am having a hard time finding an insurance that covers out-of-state networks. I got my first round of treatment in MGH five years ago through a PPO plan in my previous job, but not anymore. Now I’m getting my healthcare coverage through healthcare.gov, because my new job only offers coverage through healthcare reimbursement […]
- Emotional Agnosiaby ChrisG on August 24, 2023
Hi all. Speaking of focal seizures, with my pent up mania the past few weeks, I had 4 of them this morning, the beginnings of my uncontrollable sweating and almost no sleep. They came back with a vengence. We were on a family vacation at a nearby ski resort a couple hours away from home in order to be together one last time before my daughter heads off to university in September. Being cooped up with my children only flamed my agitation with […]
- GK side effectsby Radhika on August 23, 2023
Fellow avm survivor from UK here. I had gotten operated for brain avm by emobilization and gk in 2020 and 2022 respectively . I got Terrible brain swelling this year leading to 5 days hospitalisation. I am currently on dexamethasone 2mg per day. I am noticing some slurred speech and left hand weakness. There’s also left facial weakness. The doctor’s opinion is that it’s due to the swelling in brain and symptoms will reside with reduction […]
