@AlwaysCurious Trading - Most of my carreer was in Fixed Income Trading but I actually grew up on the Pacific Stock Exchange in San Francisco my mom worked there and I started to work for people during school breaks at 10. Then I got hired at 22 at Schwab in the Fixed Income dept . Then a few years before my stroke at 43 I got pulled over to Mutual Fund area to fix a problem in the Fixed Income systems area. I also worked on the developement of the Fixed income trading system and ETF trading systems at Schwab. The only thing I havent traded in Options.
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@mike_az_21 @DickD @AlwaysCurious My neuro at Stanford who is the founder and head of Neuro Radiology told us that people come from all over to see him and he only gets about 12 of us DAVF a year.
I think it would be really helpful maybe to have a sub category for each type for post - I know my neuro told me I would be fine post embolism ( I am allergic to the dye) and I was so sick for about 2-3 weeks each time and I guess I forgot or buried it after the 1st time - Now I would be ready for a big detox like I do post ketamine infusions-
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I agree with you both to some extent and as far as I’m concerned it’s only by having such conversations and the sharing of ideas that we can make improvements to meet the changing community needs. I’m certainly not saying ‘The mods have ALL of the answers’ because honestly, we don’t. We need individual community member’s input.
There is another option and that is to utilize the search feature, the magnifying glass, near your avatar.
If you click the magnifying glass a text box will appear. Type your search (ie DAVF) in the box and it will display posts relevant to your search criteria, you can then refine your search using the ‘Sort by’ box on the right. This can help refine your search by relevance, by most liked, by most recent, etc
Merl from the Modsupport Team
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Shoot, I’m just happy this place exists - period
It helped so much to touch base with real people - not neuros. . . Don’t get me wrong, my team was amazing & gave me all the pieces - then I brought them here to make sense out of
However you guys want organize it, is fine
But, I don’t think breaking every type into subsection is very necessary - like mentioned, I use the search function if I’m looking for something very specific
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Guys,
I’ve done a trawl through and moved a number of stories to a new Types Of AVMs / Brain DAVF category.
In general, I’ve not moved really old stories, as most likely the correspondents are not active on the platform these days.
However, I feel I’ve learnt something in doing so…
- Cerebellum AVMs seem a little closely related to DAVFs of some kinds, as there were several stories I found where the issue was closer to the cerebellum than the dura mater. I’ve left those wherever they were. So, do go and read about cerebellum AVMs as well.
- I’m sure there is some commonality of symptoms, so gathering this stuff together – at least a little bit – could be helpful.
I’ve moved this thread to the new category, too.
I may revisit the stories that I’ve moved to give them more relevant titles and act as a better reference.
Where there has been a mix of AVM and DAVF, I’ve left out of the Brain DAVF category. I’ve also left out Spinal DAVMs – these are most often already in the Spinal category – VVAVFs – we have one member with a VVAVF that I remember and a VGM (Vein of Galen Malformation; these seem quite different).
@AlwaysCurious Have a read around and see if there is anything repeating that you recognise that helps you. I tend to feel there is a lot that I recognise; you have symptoms that are less familiar to me, though I think I did find one older article that referred to eye / socket pain.
Hope this works out. I’m here to help, you know.
Richard
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Merl,
This is great advice.
What I’ve found this evening is that you have to work your way through the million posts in which @Angela4 and @DickD say “I’ve got a DAVF…” 
Richard
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To be honest DickD it happens quite a bit in other communities too AND I don’t think that’s always a bad thing because sometimes the mental processing of it all takes time and affirmation, often self affirmation. ie “I’ve got a DAVF…” to actually say it, to process it, to come to some sort of acceptance of it all. I think showing that is a good thing. I didn’t have anybody to compare or ‘bounce ideas/thoughts off of’ when I started this journey, so I had all of that same $%@& rolling over and over and ov… and nowhere to put it. That was a Bad thing. Just to be able to say “I’ve got a DAVF…” and have that ‘PHEW, so I’m not alone…’ moment can mean so much.
The other thing I want to say is that often what you and I may think of as an insignificant point in the management of our own journey’s, could well be that ‘key’ some other poor sod has been hunting for on their journey. None of us have had exactly the same route, but often just to know that some of those odd, strange, weird etc etc etc pains, sensations and symptoms are not so unique, that can be a darn good thing. Well, it was for me 'cos the medicos had me questioning myself with statements like “THAT shouldn’t be happening…”(But it was happening) and my all time favourite “It’s nothing we’ve done… …it must just be YOU.” (Like I choose to be in this position).
Having other people say ‘Yea, been there, Done that…’ (even repeatedly ) OHH PHEWWW!!! ME TOO!!
Merl from the Modsupport Team
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The only trouble is that the evidence points to me & Angela telling people with AVMs that we very much relate to them BUT ours was a DAVF and so, looking for the term “DAVF” basically brings up all of mine and Angela’s empathetic posts as well as the real DAVF stories.
Anyway, I’ve done an initial trawl through the search list and moved what look like good, solid DAVF people and their stories to the Brain DAVF category, under Types Of AVM. I’ll probably do another sweep through and find a few more another day but it feels like a reasonable number to start with.
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Ahhh, see, and that’s why breaking it down further into differing types isolates the types further, making micro groups. I can understand in regards to, for example, uterine AVM’s as the treatments etc would differ vastly. But when it comes to the brain I don’t believe splintering the differing types on their own is going to be of any great assistance overall as many of our ‘Brain’ experiences can be VERY similar, hence the suggestion of utilising the ‘Search’ feature.
Merl from the Modsupport Team
Thank you for doing so much work @DickD !
Like I said in earlier post guys, do what you think is best for the community
I think it’s absolutely fantastic! But that’s just my personal opinion. If you get a feel most don’t like it, change it back like you said Dick
I had my follow up with nuero guys today to discuss my results and I’ll post what was said later but funny enough one of his exact comments during my enquiries about my own treatment was he said DAVF is very specific and is so different from other avms we treat
But as mentioned in a previous post of mine, I see Merl’s point of micricommunity too. It’s a hard one. I love what you’ve done Dick! But I guess you guys have to decide what’s best or ask the other members / administrators what they think… I’m only one person 
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Hey, you’re worth it, just like everyone else.
The Brain DAVF sub-category could be a useful quick-reference for those of us in the @BrainDuralMeningeal group to find people in about the same predicament and I do think it helps to be able to read story-by-story and see some of the common features – pulsatile tinnitus, dizziness, embolization as a treatment (and I think I saw one story about pressure behind the eyes) so I hope it is a potentially useful resource.
I completely note Merl’s concerns. Let’s just keep an eye. If it helps one or two people, that’s fantastic. If it falls out of use or we see conversation being somewhat stilted or siloed, maybe it’ll need changing or undoing.
Anyway, I feel I look after some of these things for PAVMs, UAVMs, Extremity folk or Spinal folk, so I don’t mind keeping an eye out for how we DAVFers are doing.
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I think it’s only by having such conversations that we can adjust and improve the communities and that’s a good thing. The very last thing we want to do is have a top down approach where we say "I’m right and everybody else is wrong…’ And although you say
as a member of the community, Your input counts too.
Merl from the Modsupport Team
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