I’ve been researching things for months before and more so after surgery.
And I couldn’t find a site on dural av fistulas or the like. Maybe I was searching the wrong search terms lol
From what I’ve read here so far, it’s probably helped me more in the last few hours than anything I’ve ever read in 12 months so thank you
I realised the last few days of a bit of depression and anxiety that this was playing on my mind subconsciously and making me feel bad mostly from the ambigious and cryptic answers from drs
I have very limited friends after my initial diagnosis and family is non existent basically. I live alone and my son just moved overseas. So I’ve had to go it alone and I’m fine and strong enough to do that. But I am a people person and get along with everyone and I do very much miss the connection with people!
A few things in life took most friends and family off the map sadly but I like people in general
This so far has been a real godsend to find this site so once again congratulations and thank you all!
welcome @AlwaysCurious I too have a DAVF and was lucky to have found this site before surgery. Everyone is wonderful and very supportive.
The site has changed our admin @DickD also has a DAVF and can help you find past topics. But we all have been throughout and understand the issues that come with AVM and even the loss of friends and family.
Even though I have big family - they just dont understand. Even my husband who got to see me post surgery when I had a stroke doesn’t get it and they broke him in cause I was signing cause I could not talk saw I was in so much pain it looked like I had locked my jaw and I was making my owns bleeds as I thrashing in pain. I felt like I was being electrocuted . He also did not know I knew sign language.
I had a major freak out on here when I was diagnosed. I had already just had a massive stroke 9 months earlier due to blood clots and had finally started to walk again.
I feel for you but understand. I have had a LOTTT go wrong in my life and I always handle it and so I just chalked the avm up to “Just another thing to add to the list- nothing I can do about it so forget it” as I don’t have family that understand at all either and i dont look for attention. It’s not talked about at all. Strange family ok
But I recently realised subconsciously, it IS a big thing and has been playing on my mind. So trying to slowly deal with it now
Welcome to avmsurvivors! Its great you found us and I think it is important to talk about stuff like this. If you’ve no-one else to let off to, its perfectly right to let off to us. Its also got to be good that you recognise that it is having a bigger impact on you than you originally thought because I tend to think that’s quite a mature realisation. There’s a lot of mental health discussion in the news these days and that’s good because a lot of this is about mental health, not brain health!
I think you found part of my story, linked from articles that I shared with Mike From AZ. Like Angela says, I had a DAVF and there are a bunch of us. Best phrase to search for round here is “DAVF”. Use the grey search icon but beware really old stories dating back pre August 2016 as the site was re-platformed in summer 2016 and a bunch of the older crowd never really got used to the new style and stopped using the site.
Ask anything. Its what we are here for. We can’t give medical advice but we can share what happened to us and what we have been told, or have read, etc.
Welcome to the AVM Survivor’s network! We are a group of AVM-ers who really “get it” and we don’t mind sharing what we know or what we have experienced. Each of our journey’s is different, but also alike. My AVM ruptured almost 6 years ago and my journey continues. I’m in a good place medically, but sometimes I have my moments of $#@& this AVM. This is a great place to seek support or to vent, so reach out when you need to. I wish you all the best on your AVM journey. My tried & true recipe for dealing with my AVM is P&P (Prayer & Patience). Try it.
I have three fistulas or AVMs in mid spine but all cleared after surgery now rehabilitation physiotherapy to walk again. It is a long process but never give up despite the pain, discomfort and bowels & bladder complications. Keep fighting we can all do it! I’m 55 with three grown up gals. Educator from Singapore.
My AVM ruptured before I knew I had an AVM! I was watching TV when I was struck by the most horrendous pain you could imagine, and that’s when my journey began. Because of the location of my AVM (Cerebellum, close to neck muscles) the only option available for me was Gamma Knife Radiation. So far I’ve had 2 Gamma Knife procedures. Each one takes 3-years to complete its cycle; and 2 Angiogram procedures and lots of MRI’s & MRA’s. My AVM is much smaller now, but not completely gone. I am hopeful that my next and last (should I decide to do it) Gamma Knife Procedure (in 2 years) will completely obliterate this thing in my brain. In the mean-time I practice P&P. Again, I’m glad you found our group and I’m wishing you all the best.
