I wish with all my heart that older users would still be active here to encourage us with their success stories…
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Still here - 5+ years post hemorrhagic stroke & embolization. I’d say at this point I am most recovered. Definitely didn’t seem likely when it happened.
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@Amareea I completely understand what you’re saying. Having members remain active in the group long after their diagnosis and treatment can be very rewarding in terms of being able to see the big picture. This is what happens with a lot of support groups though. People come when they are in need and when their own individual need is no longer as strong, they tend to leave. We definitely have a few people in here who have been here for quite some time though and hopefully they’ll respond to you.
Sharon from ModSupport
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Thank you, Sharon !
Can i ask you why did you waited for it to burst…they said to you they will not touch it just if it is an emergency?
It was never discovered - it was actually somewhat found when I was 14. But, they knew nothing about it, my parents did speak English & I just remember the doctor say to keep an eye on it - that was 25 years prior to my hemorrhage.
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I am 46 years post bleed from my AVM back in 1979 at 19. It was treated finally by stereotactic radio surgery twice and ablated 20 years later. I’ve always had epilepsy but I will be coming up to my pension age next year. I’m a long term survivor. I had children whilst my AVM was active and have always lived a normal life. But I didn’t have access to all the information that you all have now about AVMs. I wish you all the best with your AVM journeys.
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Hi Harley,
Thank you for your reply.
I’m glad you’re doing well and that you’ve never let your AVM affect your life.
Thank you for your kind words!
If you don’t mind, can I ask if I understood correctly?
Did you have radiation after the rupture, and are you still AVM free or did you have radiation 20 years after the rupture?
Thank you very much!
Happy Holidays!
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I have been here since I believe June of 2016. I had a bleed in May 2016, and Gamma Knife in November 2016. My AVM was confirmed obliterated in February 2019. I had one seizure in January 2023, and none since. I was able to live my life as before, but recovery did take a lot of time, lots of progress early and then the pace of recovery slowed. I was 48 years old at the time.
I have seen a lot of people come and go, and like me show up in a time of need and receive the support we can provide. There are quite a few of us who have been around for a while, and we often have others drop by from time to time. I became a moderator in 2016 as well, and while my activity has wained some in recent years, I try to get on a little each day. I hope to continue to do as much as I can, although I plan to retire in the next year or so, maybe will have more free time. I enjoy being able to add my personal experience to others, particularly when people join us, they are having a really bad day. If I can help just a little with my story, I certainly will. John
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Hi Amareea
I had radiation 20 years after my bleed as that treatment wasn’t available at that time. Then again 2 years afterwards to treat a residual. I was told I was AVM free back in 1994. I recently had an mri with contrast which said I was still AVM free. I hope stories like mine help. Happy holidays to you too.
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My AVM was angiographically obliterated via surgery in July 2023. Fully recovered since then, no side effects outside of the very occasional minor headache. Mine was grade 1 located in the right frontal lobe FWIW.
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Hi. I’m doing very well 12 years out. Cerebellum hemorrhage repaired surgically, Dr Schvenk, Cedar Sinai in Los Angeles. Seems like it took about a year to recover fully but I feel I’m about 95%. Happy to answer any questions anyone has. Thanks. Howard.
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Hello Howard,
Thank you so much for your answear!
Can i ask if it was deep your avm?
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Hi Amareea,
I wish I could answer but I don’t know.
Best, Howard.
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There is life post avm bleeds but it is often very different to pre bleed.
I’m over 30 years clear now but I’ve been through ICU, tracheostomy, rehab, surgery to remove avm, and can live an independent life which I hope is a positive story.
On the flip side. It is a really crappie journey and there are days when I want to end it and wish I hadn’t survived. That’s blunt but also a realistic look at my life now.
I was 19 when I bled, same as another guy on here.
I hope you recover well
Tim
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Still here, 19 years post bleed! Thanks to everyone for this community; I’m glad to have you all on my side especially as I deal with the effects of my second bleed in 2020 and as I recover from my third Gamma Knife in 2021. 
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Five years post bleed and radiation treatment, my AVM was declared obliterated in October. I still contribute to the effort and promise to chip in whenever I can help.
This site has been very helpful to me over the past 7 years. The least I can do help others who are looking for information.
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Thank you🙏🏻
Can i ask where was your avm?
Right front lobe about 3 cm. Since I was 63 when it was discovered, the neurosurgeon recommended against surgery to remove it. But after two more seizures over the next three years and then a bleed after that, they decided to treat it with radiation. Five years later and it was gone. Now just waiting for a meeting with the neurologist to see if I have any restrictions. In the mean time, I’ve started running again, lifting a little more weight and plan on skiing next week.
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I’ve been on here for quite some time also, 2011 to be exact… God bless!
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