I have noticed that many post of this web site give us negative side effects of AVM. For an example 1. We can’t search possitive outcomes of avm in this web
2. but we can search thousand comments about negative side effects of avm
Kuma
I kind of know what you mean… it is easier to list the things that still need fixing than to say “I feel perfect!” And maybe the impetus to remember to tell everyone how well you got on is not always there. We are here to support the people who still have difficulties rather than those for whom normal life has resumed.
I know in my interactions on the site, Reena encouraged me with her outcome:
http://www.avmsurvivors.org/t/my-update-dural-avf-embolization/16916/14
And my favourite positive-person of all time is Bill, who cheered me when I first arrived here:
http://www.avmsurvivors.org/t/the-process-of-diagnosis-takes-a-long-time/15661/2
“… fear not, DickD, you’re going to be just fine…”
We should all remember to share the good stuff as well as the more worrying stuff.
Fear not, Kuma, there are very good outcomes to be had here…
Richard
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Hi DickD, unless I missed it I usually include in my posts to folks like you the following which takes some serious positive thinking: you must get into your mind that there is no other option but getting better. Getting as close to your pre-AVM condition as humanly possible. It may not be 100% but you must think and will it. It takes a lot of time. And you must endure pain, frustration, vexation, anger, irritation, blah blah…you must believe you’ll get there.
Please update me/us when you can.
Bill
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Bill,
You’re absolutely right. Positive thinking and determination are key. It is easy, when it is not going 100% as you want it, or it is slow, or people don’t understand, to be set back, to lose positivity or determination.
If I’m honest, I’m feeling a bit set back myself at the moment. I want to be more well than I feel and it takes its toll. It is great to have people like you remind us to carry on the fight. I’m reminded of John McCrae’s poem In Flanders Fields slightly…
Thanks for the spur to action.
Richard
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Hi Kuma,
Yes you are right, there is a lot more negative stories on the site rather than positive ones, but I find most people use the site for advice and support when feeling worried and scared. Not so many take the time to reflect their positive outcomes and stories,my self included!! Most are supporting fellow avmers with their experiences.I myself have had a positive experience following my avm journey which started over two years ago now. But It has come with its set backs. My bleed and surgery is still quite fresh 6months now,so I am still in the process of accepting the trauma and psychological effects that comes with such an assault to the brain. But I am healing day by day without any major deficits that some suffer and I will write and upload the journey and results so far to help others looking for inspiring stories to help with the doom and gloom that comes with diagnoses .Perhaps the moderators could set up a a sub group for positive stories. As this is more a forum to share experiences But I must warn it would be a long read 
All the best Amanda xx
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Thanks Amanda. Sometimes , i feel that this web site plays a marketing role for somebody or some companies
Define positive outcome; I consider my outcome positive as I am still alive, I can still interact and share time with my family and friends and have some semblance of a social life.
though I will probably never drive or work again I still consider my outcome positive as I’m still above ground.
I believe a positive outcome is in the perspective of the person with the AVM as many of us have permanent deficits that we will deal with the rest of our lives and anybody who has had an AVM probably has a change in their perspective on life.
I still come to this website to compare my situation with others who have similar circumstances and to encourage people who have been newly diagnosed with an AVM and to help them get through their situation.
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Finally, some relatable content!
I almost never post here because this place seems to be more of a support group than anything else. I recovered with barely any deficits, but–here’s the part I haven’t told anyone here–I actually felt so much better in the six months after my coma. I was calm, unflappable, and just plain happy all the time. It was wonderful.
Granted, the euphoria didn’t last, but it didn’t totally leave either. I’m less susceptible to stress now, less concerned about things I can’t change, and generally just a happier person.
Like I told the people that came to my birthday the year it happened, “I feel like I’m finally the person I was meant to be.”
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Hello Kuma, I read your reply and I’d say where there are plenty of sites for conditions where the front for pharmaceutical companies is true. It is not the case with this site or any of my experiences with it. When I look for assistance with endometriosis or menopause information the former I have the latter I have now entered there are so many “forums” offering friendly advice that always end with some kind of symptom survey. The great thing about this site is there is none of that. It is what it is. So rest easy!
Laura
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Kuma,
This site is one of the Ben’s Friends communities. You can read about Ben’s Friends in the Category on the home page, or here:
http://www.bensfriends.org/mission/
It is not about selling products or services at all. Just peer to peer support, for however you need it.
I can say I’m very proud to be one of the volunteer moderators in this community, who have helped me through the diverse days of my experience with an AVM.
Richard
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Hello Richard,
Thanks for this?!
Laura
As with all of our Ben’s Friends communities, it’s the people who are having problems who hang around: a great proportion of those who now feel great disappear from the community. Why? Well, the people who are feeling good don’t need advice, don’t want to appear to be smug in the face of people who are suffering, and they are probably way too busy to be on a support site. (Unless they are Ben’s Volunteer Moderators like our own DickD, in which case they are committed to helping others cope, day in, day out) Human nature, of course!
Seenie from Moderator Support
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Kuma, when you come across something that has the feel of marketing or promotion, please flag it for the moderators. Click on the flag icon, and the mods will be notified of your concern.
Seenie
I’m not surprised on Gamma Knife while most all patients have a great experience with Gamma Knife, it does take the average person 39 mos for the AVM to “disappear” For many this will include some symptoms. That would be very discouraging to most…
Kuma,
Not for sure what ur complaining about. This site has always been helpful for me. I have never felt anyone was selling anything. I have listed positive and negative things but mainly most r listing helpful information. I’m so glad that God has kept me here longer and He has plans for me but it doesn’t change the fact that my life will never be the same. Life is how u view it. Life is good but hard. Hopefully we can all find the positive in life.
God is good all the time, and all the time God is good
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Kuma:
This web site is full of positive outcomes! First of all if we are well enough to respond to your post, we feel we are winning this battle in small and large ways. It took some of us weeks, months and possibly years to be able to read or walk, or construct a sentence. Little victories mean a lot in the AVM world. My guess is that you were recently diagnosed and you are scared to death. I think we all felt that way as we began our AVM journey. While fear can over whelm you in the beginning of your journey, we are here to give you the support and encouragement that you are going to need as you meet your various mile stones. Try Prayer & Patience. It definitely helped me! Wishing you the best.
Sharon D…
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I can share something poisitive:
Before my AVM brain bleed when I was ten, I was bullied a lot by my aunt. In general I was an unhappy kid who enjoyed wallowing in my misery. I had a good life though, with the exception of that aunt. I was very introverted and shy, especially at family gatherings.
When my brain bled, the doctors induced an 11 day coma. I am told that when my aunt visited me, I became very agitated, even in a coma.
Because the bleed caused memory loss, I sort of forgot how mean my aunt had been (or I was too tired to fight) and we started doing things together again. She has revealed her true colours since though, but I have been able now as an adult to write her out of my life.
I am still nervous at family gatherings, but mostly because of the noise— but I no longer avoid people all together. I think my bleed taught me how to cope with negativity and not let people get to me. However, I have learned to tell the difference between the people who are genuinely interested in me and those who are just going through the motions. My brain bleed has made me more social and open to trying new things, but it has also taught me not to bother trying to earn the approval of people who don’t offer me the time of day. I have a great group of family members that appreciate me, and I am much happier and better off with them!
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Hermione such inspiring words, thanks for sharing your story, I want to be more like you and start seeing things from a higher perspective 
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Perhaps it is because there are so few positive side effects of an AVM, like “Wow, when I awoke after my craniotomy, I could suddenly speak Mandarin, and play the piano too!” Unless I am mistaken, an AVM and its treatment, are an injury, and even when the treatment is successful, leave several deficits. Sometimes minimal, and sometimes a whole lot more. It is how we choose to deal with the deficits that can be either positive or negative.
And, as for this seeming like a support group… well, isn’t it?
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Oooops, I posted this before I was finished. I meant to add, when I found this site I was looking for a support group, and I am darned glad I found this site. It has helped a lot, just by showing me that there are people out there going through the same things that I am.
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