BIDMC Brain Aneurysm Virtual Support Group Meeting - Wednesday, September 21, 2022

Please just us for our monthly virtual support group meeting.

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Meeting ID: 890 3605 5290
Passcode: 445024
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Meeting ID: 890 3605 5290
Passcode: 445024
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I hope that I am not this dumb and the time of this meeting is provided, but I can’t see it anywhere. Can anyone share what time this group meets? Thanks!


It’s a good question. Martha’s previous posts seem consistent in an 11am-12:15pm time and since she is based in Massachusetts, I’d assume EDT.

@mdilor2 it would be great if you could confirm…


It’s by no means a dumb question!

I found it by doing a search on the BAF website

It’s from 11-12:15 Eastern time every third Wednesday.

Hi it is Suszanne from BC here. Could you give me the date of the next Virtual Meeting so I may write it down on my fridge calendar please. :grinning:

Suzanne, usually no one replies from the BAF on questions which means we have to do our own sleuthing. I just did a search on their site and came up with this Beth Israel Deaconess Brain Aneurysm Support Group - Brain Aneurysm Foundation. It list all the dates for this year!

I did a bit of sleuthing yesterday as well. @Suszanne is in British Columbia, so I was looking for something appropriately local. While there appears to be a web page to donate to BAF Canada on, I didn’t find any local support groups. So I’d recommend joining one of the virtual sessions that are advertised in this category from time to time and ask about Canadian groups.

Thanks @Moltroub and @DickD. I wonder why there are no support groups in BC. I will try one of the virtual sessions and ask about Canadian groups. I checked out the Bee Foundation which might be good and will check out Beth Israel Deaconess Brain Aneurysm Support Group. I appreciate all the help and support I get. Thank you, thank you, thank you! :grinning: :+1:

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It may be that BC doesn’t have enough cerebral aneurysms to start a group! I’m guessing there’s more funding if the title the support groups use is under the generic brain injury of which there are many in BC. But I am not familiar with taxes and politics in BC. You might have some luck just searching stroke. Here’s a start

There are two BAF groups in Seattle, Washington… not sooo far away.


The UW says it does online / Zoom calls but the page hasn’t been updated since 2021. However, @Suszanne maybe write to one of the emails and ask about online meetings or Canadian groups. I assume either of the Washington meets would at least be in the same time zone as you.

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Thank you all very much for looking into this for me. The bee Foundation does virtual support as well. There really is no support services close to where I live but that is okay. I will do many virtual calls…as I feel the more information, I can get the better.


Well, I’m glad you’ve found somewhere. Well done.


Learning is great, I hope you get a lot of information! Please let the other members know what you’ve discovered.

2 posts were split to a new topic: Discovering new life skills

I totally understand that. I was using a small daily agenda book and a scribbler for writing everything, and I just got too frustrated until my counsellor told me to use my monthly calendar and change it into a week with the spaces broken down into times. I use different colors for different events. I can actually see it now whereas, the other way was a jumbled mess, and I couldn’t understand it. Talk about “new brain function”! I find that hearing all the stories gives me hope. Does the dizziness, neck pain, spine pain (stress induced), headaches, hypersensitivity to light and sound ever go away?

Color coding is smart, good for you and your therapist!

Yes, for the most part it did for me, with some exceptions. In the beginning, everything was multiplied 100 fold it seemed. The dizziness slowed down as I learned not to bend over so much but to do as I’d been taught and squat, bridging when I got up. It also helps when I garden to be on my knees I have a lot of dislocated vertebrae with only three I think it is that has screws and pins, so spinal pain for me is still there but not near what it was and I can usually adapt to that pain as I had surgery the year prior to my rupture and was assigned to a wonderful PT who taught me all sorts of stretches besides how to bridge. I also take gabapentin and use muscle balm when it’s bad and stress seems to head right to it as well as bring my neurological issues to the forefront.

Being under a tremendous amount of stress the last couple of months, I did ask my neurologist about it and he prescribed something that I only take no more than three times a week as it’s highly addictive. My issue is that I don’t know when I will need it and forget to put it in my pocket for the times I do. Unfortunately I’ve noticed that I forget to do my relaxation breathing which is as much a part of me as regular breathing. I need to start consciously practicing again.

Sound and light sensitivities have decreased a lot. I’m not sure if it was me introducing myself slowly and increasing both or if it was the fourth procedure, maybe a bit of both. I can hear high pitched noises when others can’t, just this weekend my cousins kept insisting I heard a crow or blue jay until the hawk soared overhead. Being who they are, I was still incorrect but BH came to my defense.

A week ago we were able to visit friends that have just had their first baby. The father was flipping the light we admired but it strobes and it threw my skill set out the window. You should have heard the PGM and Mother telling him to shut it off. He couldn’t figure it out lol. What would have taken me days to get over, just took about ten minutes! I didn’t get the headache, and my words came back, stutter decreased and tremor about stopped. So I consider that a win!

Just take it slow and easy. Don’t be surprised if some days feel like two steps forward and five back. You will get there, be tenacious with your little goals.

A post was merged into an existing topic: Symptoms before and after surgery