I don’t really know what to say. Heck I don’t even know what to do. I was diagnosed with several cerebral AVMs. At this moment surgery is too dangerous unless it comes to no choice. They can’t do anything except keep an eye on it as it hasn’t burst yet. I always act fine, but in reality I’m scared.
Welcome to the site. This place is brill for asking questions/discussing issues.
My AVM’s are in my right lung, so unfortunately I have no experience of your type of AVM. There are plenty on here who do though, so do use this site, it may be able to put your mind at ease…at least a little bit.
Take care Mandy
Welcome! Thank you for joining the avm survivor family! I granted your membership yesterday and read your story. I completely understand that you’ve got a difficult outcome and you’ve spent some months going through that, I hope not alone.
You are among friends here. Many people are lucky enough to do something positive about their AVM but there are a number like you who have little or no choice. There are also some folk who could perhaps do something but medical advice is not to act (yet) so, you should find many of us have agonised over what to do as the process of discovery and decision making takes an age, or who are very much like you and have no choice.
I’ll give you a few stats in case it helps. Ive read somewhere that they reckon 1 in 1000 people have an AVM and the majority go all the way through their life without it doing anything untoward. The number of people who are actually diagnosed with an AVM is reckoned to be about 14 people per million per annum, so very few people have issues with their AVM.
I’d say it’s a good thing that you know what it is, because even if you can’t act now, you know what to do if you feel ill, whereas if you’d carried on not knowing you might suddenly fall ill and the hospital might waste time working out how to help you.
So… welcome. It’s great to have you here with us. Well done for introducing yourself and I hope we can all help you along your future path a little bit, however you need.
It is good that the doctors have found it before a bleed. I had no symptoms whatsoever until my bleed, but because I did have a bleed, I now have fatigue and short-term memory (even ten years later). When the bleed was discovered, I was put into a coma for 11 days, had the bleed drained, and was stabilized and sent home. It was six months after that when I had the Gamma Knife, and my first surgeon didn’t even advise me to be careful–when we asked about surgery and he said, “She’s fine. She can go sky-diving” we fired him and replaced him. And while I have still been very careful since my surgeries, my AVM first ruptured when I was sitting at my desk doing school work, so you just never know.
However, Richard’s statistics he provided you seem very positive!! I wish you all the best!
I’m sure Andrew counts as “above average” in terms of risk… but I wanted to give a little balance. Knowing they are there is key, knowing what to do, what to tell people to tell the doc.
By the way, I wear a medical bracelet so if anyone finds me lying in an ungainly way on the floor making no sense at all, they can still see what the primary cause might be. And I’ve told friends, family, work, the taxi driver taking me somewhere when I’m having a more fragile day. Heck, I’m telling the world of Google on here. I don’t care who knows if I think they’ll pay me back by helping me if I get into trouble.
Andrew, welcome. Very best wishes,
Andrew, I’m Seenie and I’m not a member of this community, but I work, helping out, on the larger Ben’s Friends network. Welcome to this community: it is one of our top communities, and the people here are wonderful. Here, you will find information, and experience, and (even better) wisdom.
I’m really sorry to read that you’re in a difficult position. The question that occurs to me is, how can we help you here? Do you just want a friendly “ear”, or can we give you something more, like some ideas for where to get a second opinion or other supports?
How can we best help you? Your fellow AVM survivors are ready to lend a hand.
All the best to you
Seenie from Moderator Support
Hi Andrew. I found out what an AVM was and that I had one last year at 48. Lots of folks on here with a wide variety of experiences related to these things. I hear you on the fear piece, I had a lot of trouble accepting being scared. Its great your on here, it is a great group.
Welcome to our family of AVM-ers. The good thing about this group is that “we get it”. Most “out-siders, don’t”. We are always here to lend support and encouragement. We don’t mind sharing our experiences. I didn’t know what an AVM was until mine ruptured while I was watching TV in Nov., 2014. My AVM is in my Cerebellum and it affected my walking, coordination and short term memory. I had Gamma Knife Radiation 4/15, and it now appears my AVM is gone! This survivor’s network was and is a life-saver for me. When you reach out, we’ll reach back. I wish you all the best. You have to take this thing one day at a time; remember to breathe; Pray; and try to be patient.
You got to keep the faith. They went up my vain and put glue around it. That is one way. I still have all the pains and all but it’s not growing right now. They keeping a check on it every year.
Andrew I am praying for you and that you dont ever have to experience a bleed or suffer a rupture… pray, enjoy life to the fullest and be happy… anything can happen at any time or day… even while we do every day tasks such as driving a care. So dont let this or any fear hold you back… take care…
Hello Andrew and welcome to the site. I had an attempted ablation of my Cerabal AVM but the surgeon said it was far too dangerous. I, like most was born with my AVM and I’m 55yrs of age. Just be mindful of things that you do, like never go scuba diving and doing dangerous sports. I’ve travelled lots around the world on very long haul flights and I have been fine. I have learned to live with the fact that if mine bleeds I will have a severe stroke, paralysed and even worse. At least we know we have an AVM and one step nearer to surviving if it bleeds.
Welcome to this support site. I am so sorry this is happening to you. Have you gotten a second opinion? You can check on here for a list of recommended doctors. I am in Northern California and I see Dr Michael Marks at Stanford. He is the founder and head of neuro radiology at Stanford. If I was not seeing him I would see Dr Lawton at UCSF I have seen his work and a few others on here have had him work on them.
I was 43 when I had a massive stroke and was in a coma for five days after I awoke the damage was done and I could not recall anything short term memory was shot, could not walk, nor talk or do simple math and I worked in finance-
Just as I was starting to recover from the 5 blood clots in my brain that caused the stroke, i started getting some weird symptoms like passing out and hearing a whooshing. I mentioned to my stroke doctor who is also at Stanford and heads that dept and he said you cant have another rare thing and mentioned avm.
I could not even really comprehend what he was talking about…I just thought it was maybe all the meds I was taking. So I found this site and via this site knew that Dr Marks was the shit dr at Stanford for these. So when I went to my next appt and he was there with my stroke doctor I knew I had it.
Mine was caused from the trauma of my stroke and collapsed a major vein on my left side of my brain so my body tried to fix it growing the avm.
I am still not fully recovered from my 1st stroke but people say that cant tell. But I can.
I am sure you are freaking out and friends and family find it hard to relate cause we look fine. We are here to help. We understand cause we are all going through it.
You may have to make some life changes or take some items off your bucket list. There is no reason why you can not work and be a web developer. I do some web work for some nonprofits that I help for free. Infact I left the finance corporate world and have started a nonprofit with some friends.
You may have trouble with vision, sleeping and head pain. I dont have opiate receptors so most drugs dont work for me for pain so I finally got my medical marijuana card and I do the liquids and gummies which have been a life saver mainly for sleep and pain. Even my mm doctor is a neuro just by accident I went to her and she actually specializes in the area of my brain where the stroke happened.
There are a few doctors/hospitals on here that you can send your scans and they will review I think one is Barrow - and you can try Dr Michael Marks as well his nurse is Mary and she is super nice.
I know I feel like I have a bomb in my head. And as others said on here I do have a medical bracelet with my avm info and other health issues I have -
I also have TAKE ME TO STANFORD on it with Dr Schwarz who is my stroke doctor who is in charge of my cases at Stanford. Here is one place I have a medical bracelet from
https://www.survivalstraps.com/ sign up for their emails they are always having sales and I bet they will have one for the 4th of July.
Here is the other one that has everything on it and its stainless steel so I can wear it in the shower and swimming and you can also have it engraved on the back. https://www.americanmedical-id.com/stainless-steel-classic-medical-bracelet.html
I have learned to say no - if I am not feeling well and need sleep I wont go do whatever I was supposed to do - I dont over extend myself like I used to cause I need more rest.
All my friends and family know about my issues and know to call 911 and get me to Stanford if anything happens.
It is ok to be scared, Andrew. I was told that my AVM was inoperable by the first doctor I saw. When mine started rupturing, Dr. Saleem Abdulrauf (at St. Louis University Hospital, in St. Louis, MO), said he thought he could get it (and he did!). Look him up, if you like. Know that we are here for you.
Hi Andrew. And like many others have said, welcome to the site. We have all have experience of dealing with AVMs as survivors/patients, family or friends. My own AVM is a cerebral one and is situated deep down in my Cerebellum. Like yours it is too dangerous for surgery so that isn’t a treatment option for me. Embolisation and then Gamma Knife together is a possible but would involve multiple procedures, involving severe risk of deficit and limited chance of success. I too was advise not to go through it. So far I have therefore left it to God and taken my chances. I think I’m in the minority here in believing that taking no action is the most sensible course of action for me. But there are others and I have heard that a lot of AVMs have only been found at postmortem, having never caused any problems. I can certainly understand your fear but I try to focus the positives in my life instead and it keeps me going. Best of luck.
ps I wear a medical bracelet too. It gives me lots of peace of mind.
Could you please tell me what you wrote on the medical bracelet? I have an AVM at the top of my brain which I don’t really worry about but it would be nice to have a medical bracelet so other people will know what to do.
Mine says my name, NHS number, c/o hospital name, then my condition, and some other info so…
Richard DASTARDLY 444 444 44r4 c/o QMC Nottingham has an embolised dural arteriovenous fistula R occipital. If seizure or stroke, dial 999. ICE 07777 777777.
Where all the 4s are my NHS no and all the 7s are my wife’s phone no. “ICE” is a common term used in the UK for “in case of emergency, contact”.
Hope this helps
Mine has my name, DAVF LEFT SIDE then my other health issues then my allergies then my neuro/hospital last in CAPS
mine takes up both sides of the medical bracelet so I was limited to my choices