Spotlight on our Moderator: DickD of AVMSurvivors.org

Sascha Gallardo May 24, 2021

Members find our communities for many reasons. They may be suspecting that they have a condition and are researching what they might have.

They might have just been diagnosed and want to find out what others have gone through or want to know what their options are.

Many of them are looking for doctor recommendations while some want to share their fear or frustration to people who they know would understand.

We also have members who are caregivers or relatives of patients who want to become familiar with what they are experiencing so that they can better care for them.

Addressing our members’ needs is no simple task. Foremost among the things we have to focus on is ensuring that our communities are safe for everyone.

Among other things, we need to make sure that our members are using appropriate language and that they respond properly to questions. People will always have different opinions on a subject but we need to make sure they are discussed in a positive way.

Our moderators undoubtedly play a big part in making this possible. They are the ones who ensure that guidelines are followed at all times and that everyone is contributing to the healthy conversation in the community.

Being affected by the same conditions themselves, our moderators are very much familiar with what our members are going through. Like the others, they can respond to questions based on their personal experience. Or they can tag someone they know who might be able to provide valuable information.

In this blog, we would like to introduce one of our moderators and share what the community means to him.

Please tell us something about yourself.

Hi. I’m DickD and I’m a member of the avmsurvivors community of Ben’s Friends. I’m in my fifties and I live in the UK.

Please tell us about your Ben’s Friends story.

I had an arteriovenous malformation in the back of my head which I discovered in 2016.

I don’t like going to the doctor, so I did a bit of searching online. Initially, I didn’t find anything to persuade me to the doctor’s but after several months I eventually found some things called “pulsatile tinnitus”, “AVMs”, “DAVFs” and “stroke” and frightened myself stupid. I went to see the doc!

My GP referred me to an ENT specialist. I think she thought “tinnitus” rather than “pulsatile tinnitus”.

When I saw the ENT, he did a number of hearing tests. Eventually he asked: “So, Mr. D how long have you had tinnitus?”

I said, “Oh, I’ve had tinnitus for decades but it’s the pulsatile tinnitus that I’m bothered about.”

He went to find a stethoscope and plotted all over my head, finally settling over my right transverse sinus and just listened for quite some time. It was clear he had found something.

“You’ve got what we call an arteriovenous malformation,” he said, and the bottom dropped out of my world.

I’d self-diagnosed four months earlier. I’d even recorded the pulsatile tinnitus by pressing my mobile phone to the same spot on the back of my head. So I suspected an AVM but waited for a formal diagnosis before panicking properly. I’d have to confess to my wife when I got home that my “hearing test” today was something a bit more and I was at risk of having a stroke…

It took two months to get the results of an MRI which confirmed a dural arteriovenous fistula (DAVF) in the right occipital lobe and a further five months to have an operation to glue up the fistula and reduce my stroke risk back to that of an average 50-something.

I found Ben’s Friends and the AVM Survivors community as I was about to go for that first MRI.

Tell us about your becoming a moderator of the AVM Survivors community.

I’ve done volunteering work throughout my life. As I joined the AVM Survivors community, I decided I should give back support to others, even as I was going through my own concerns.

One of the existing mods asked me if I would join the team after about three months of arriving. I think it was clear that I was there to offer help as much as to get help.

What do you love most about being a moderator?

I love the sense of giving, to be honest.

I love the effect of saying to people who are in freefall after a similar diagnosis to mine, “I know exactly how you feel, because five years ago I was doing the same as you”.

You can turn someone’s perception of the world around from considerable panic to some degree of calm by simply sharing the worries that you had at that stage — the time it took to get seen, sometimes the apparent disinterest of the neurosurgery team, and the self-advocacy that you need to do to make sure you get the attention you need, without crying wolf. (I am sure neurosurgeons often have too many patients at their door and it is a matter of prioritising the most needy rather than that they are really uninterested!)

The giving that we do on any of the Ben’s Friends communities is free. It costs me nothing apart from time and it is very rewarding.

What do you love most about the AVM Survivors community?

They’re a great bunch of people.

There are a lot of members whom we don’t hear from, quietly reading others’ stories and staying resolutely in the background. Some people read a lot.

And then there are people who are in need, looking for support because their world has just caved in; or people still fighting to regain good motor skills after a haemorrhagic stroke some years ago; or people struggling with migraine-like headaches most days; or others who have had a lifetime of operations and finding the next operation or the last operation to be a challenge too far.

Some people are really very well and some people are really very poorly. It is great to see the diverse members of the community chip in with their thoughts, their experience of the same difficult situations and nudge each other through.

Can you tell us any unforgettable story related to the community?

I’ve told this story before. I found a cry for help from a new member who had received a diagnosis that she needed to have open brain surgery. Her husband was working away from home.

She had posted the cry for help on the open forum, then thought better of it and deleted it. Her operation was a couple of days away, on the day that her husband would finally arrive home.

I was only able to see that post because I was a member of the moderator team. I wrote to her to welcome her, talk through some of her worries, encourage her that she would be in great hands at the hospital (her doctor is world-famous), and some of my hints and tips for how to get through a hospital visit – what to make sure to do and what not to worry about. Hers was a proper cry for help with no-one to turn to.

She went quiet on me for a few days but came out of the op very well, had read my thoughts and taken some of them to heart. She was grateful for the advice and I think that someone was there to just help.

That’s why I do this: to transform someone’s outlook from “O.M.G!” to slightly less (we are often talking about brain surgery, so it’s bound to be quite alarming) using just the written word.

What do you love most about being part of Ben’s Friends?

It’s the people. I now feel that I know a bunch of people who live in all parts of the world and I would love to be able to go to their part of the world, shake them by the hand and thank them for being there.

Anything else you’d like to mention?

You don’t always find an AVM in your brain.

We have members with AVMs in their spine, hand, arms, feet, legs, pelvis, lungs or on their face and we welcome people with a number of different vascular malformations, not just AVMs.

Depending on where the malformation is often affects the treatment, so we have a number of groups who are able to share their experience of the treatments, success rate etc., for the relevant places where you have a problem.

These are rare medical issues but by being a worldwide community, we can usually find at least a few people in a similar situation to you.

Also, it doesn’t have to be you who is the patient: we welcome parents, siblings, partners, friends, and others.

Any message you’d like to share?

If you’ve got a rare disease, and especially if you find it hard, talk to someone about it. Have a look to see if Ben’s Friends has a community for you.

Our communities are staffed by patients, volunteers who have gone through the same stuff. The forums are free to use, we set high standards of conduct and most communities are anonymous: we don’t need to know anything about your Facebook profile!

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