My brain avm was found in 2010. I had a grand mal seizure and was taken to hospital. I’ve been going to hospitals for years because my first doctor Duke Samson now retire said it was not operable. So I put on disability because of my severe symptoms. Migraines with weather changes so bad I cant do anything. I lose my hearing and vision. Lost taste and smell, I lost my side vision completely now. I just had a angegram and the doctor said it got worse some the brain was black out because the veins was close off by the avm. This new nero surgeon is nice and worked with my old doctor, but still I was upset to hear nothing can be done but to keep taking all the medicines I do. I have other prbs too like memory. But my therapist told me to find a community to join. This one seems nice. I just maybe I can get advice. Because sometimes family just don’t understand. this thing came. I was fired and couldn’t finish my college because of it. An I feel stuck…I so many people here going similar things like me how do you keep stay strong?
Hey,
Welcome to our community! I’m so sorry you are having such a tough, tough time of it but it is great to have you join us.
I think our community falls into a few groups and I am lucky to be much much better off than you. My AVM was much smaller and I think we got it before it mucked up anything too serious. Yours sounds much nearer the other end of the scale.
There are some people here who have more serious effects from their AVM than me and life is a big challenge. I’d love some of them to see your story and share a bit about their life.
The people who I know that have big challenges who I see writing on here, or who I know read a lot (and are often in my mind) include @wales, @electrician, @Artem, @Cody, @Carita, @Mandaayr and others. Guys, please share a bit about your situation for wnarubi.
Always feel free to talk to us about how you are doing. We span the globe between us and are here to be survivors together.
Lots of love,
Richard
Well, your not alone first of all, welcome and glad you found us, you can only do what you can do, accepting this unwanted aliment is one of the hardest parts, personally I’ve been dealing with this 30+ years, good days bad days, we are all different and you just got to find what works for you without pushing to hard, Follow your hart it will never fail you, my family doesn’t get it either, I don’t feel my doctors really get it, just know your not alone and never give up, we are all here for you, take care, I like to say, be strong and carry on
Welcome to our community! You will find lots of support here and many of us can relate
I was diagnosed in May 17 with a large grade 4 brain AVM. The year before getting diagnosed my health began to deteriorate rapidly - daily migraines and visual episodes where I’d lose my entire right visual field, my energy levels became very low, I struggled to focus on things and memory became worse and worse. I tried many differant medications but they didn’t help. I too had to leave university, moved back to my family home and went onto benefits.
My AVM was causing brain damage by stealing blood supply resulting in a lower right visual defect in both eyes. I also had a small stroke during my embolisation in Jan 18 resulting in me losing a great deal of my right side vision in both eyes. I also lost half of my hair due to the radiation.
I can relate to family/friends not getting it - despite feeling differant for around 2 years, many people only seem to be more understanding now that I’ve had a stroke, lost more vision and look differant due to hair loss and shaving the rest off. Somehow before it didnt seem as serious when truely I felt worse back then than I do now.
I have been in this journey for less time than you but I can definently relate to the emotional toll it takes already. It is good you have a therapist, going for CBT really helped me cope aswell as joining this site. I try to focus on what I can do rather than what I can’t and lean on my family and friends, and this community for support. I try to focus on small victories too even if it wouldn’t be a big deal to someone else. Writing out my thoughts and feelings also helps me alot. I have learnt to not close myself in and reconnect with friends and not be ashamed of my situation. Distancing from people who make me feel bad about myself. Having my cat also is a great comfort to me, she is my little nurse 
In terms of your AVM - have you managed to get opinions from neuro-radiologists specialising in treating AVMs with gamma knife? I have read of several cases of people with grade 5 AVMs who have had their AVMs treated using gamma knife.
Lots of love,
Corrine
You been going through this for so long so I know you understand. Thank you for the words of encouragement. Thank you for the advice too.
Thank you so much for your Sharing with me and the pick me up. Your right and our furry family members are always the best. Thanks for the advice and for replying to me.
Thank you I love to see their story too.
Welcome to the community. Hopefully you will find some of the support on here with everyone’s experiences. I had symptoms for many years before my definate diagnosis in December 2015. Unfortunately my AVM is complex and inoperable just now but I know that as science progresses there is hope. Everyone has there own individual symptoms but I recognise a little bit of my experience in everyone’s story and that ressures me that I am not alone. This is a very rare illness and like you I find that family and friends “don’t get it” sometimes when i am feeling a bit low I just want to shout out “i am not well cant you see that”.
I am in Scotland and have no one near me so this community is a link for me. People may be from all over the world but they are there if you need them to answer questions, share experience and just be there it does make a difference.
I try to focus on I am here, it’s not what I had planned for but it only means having to change direction a little. It may not be an easy path but at least i am on it to make the choices
Take care
manda
Thank you for your kind and uplifting words. This community has been really nice. Everyone has their own story and I’m starting to see so many strong people. I hope I can learn something from everyone that may help me grow stronger.
Welcome to the community! Sorry to hear about what you are going thru. It’s been a while since I logged in. I was checking a discussion when I saw your post. My daughter is the one with the level 5 inoperable AVM. She was first diagnosed when she was 2 back in 2008. Long story short, images and studies have been sent to several in the country and all of them agree to not operate bc it’s too risky. It is frustrating, especially now that she has more knowledge of what is going on and has been experiencing TIAs and other side effects bc of the size of her AVM.
What can I say? Our hope is not in a doctor, medicine or system, our hope is in God, and frankly he has never disappointed us. It is scary, especially at first, but in this experience we have learned to trust and wait in the Lord, and this has helped us tremendously. I don’t know if you share the same faith or have different beliefs and I don’t wish to offend you. However, to answer your question, how do we deal with it, I need to mention the importance of our faith and how it makes us stronger. I will add you in my prayers and I wish you all the best. Keep up your follow up appointments, continue to have your MRI/MRAs annually and send them across the US, it never hurts to have more opinions. Angiograms, we don’t do often, last time was in 2012, since it’s inoperable at this point, risks surpass the benefits. Always have hope, their might not be a treatment now but in the future, who knows. And above everything look for a faith community that will help you with the burden it can have sometimes. Take care and God Bless you.
Thank so much. I think God did want me to see this. Thank you Ms. Santiago I really need to hear this from another person of faith sometimes its so hard and you start to lose faith. I’ll keep you and your daughter and family in my prayers too and thank you so much.
Mine was first a level 5 too until they decided to embolize and did another angiogram THEN it turned out it was two level 4 avms with 4 aneurysms 
2 ruptures later, hydrocephalus, embolization AND craniotomy FINALLY AVM free at my 6 month follow up angiogram. Hoping it stays that way for my 1 year follow up in August 
I hope for you too. that its good news and praying for you too. Thank you for sharing you are so strong!
I am not sure what size my avm was cos they didn’t tell me 40 years ago when mine was discovered but it was untreatable then back in the dark ages when I had a haemorrhage. But I had it treated by gamma knife twice twenty years later and it’s now obliterated. Science moves on and now at such a pace so I’m sure there will be something for you very soon. Never give up hope.
Thank you so much! 
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Sorry for the delay in responding. For some reason my email doesn’t always send me notifications, so I didn’t realise I had been tagged in, until now.
Sometimes I don’t know how the hell I am managing to deal with all of this suffering. The symptoms are constant and severe.
I have felt SO ILL for 3 years now and had to give up my career, my independence and my life is about nothing but dealing with the symptoms. But, although there are moments where I can’t help but think ”why me?”, you just have to keep going. This is the card we have been dealt and we have to accept this change in our life and deal with it as best we can.
Actually, one of the worst parts of this whole illness (apart from the symptoms) is feeling like no-one truly understands. My symptoms are so abnormal (and some even difficult to explain) and I have found it such a help talking to other sufferers of this condition.
Groups like this one are absolutely vital for us. My friends say things to me like “are you feeling better now?” as if I have had the flu…or “let me know when you have a good day” (I haven’t had a good day in 3 years). It infuriates me. They.Just.Don’t.Get.It!!! My absolute pet hate these days though is friends complaining to me about a cold or sore throat etc. I simply cannot listen to that anymore. I appreciate they don’t mean to be ungrateful but I want to tell them how lucky they are and that I am the wrong person to moan about those minor aliments to. That probably makes me sound cold (which I’m not) but that’s how I feel now.
Just remember that you are NOT alone. Whatever you are suffering or feeling, people on here have suffered and felt the same way. Whatever issues you have encountered relating to any part of this horrific illness (including the fact that treatment is not available), there are others who have been there. Whenever you need to talk, about anything, at least you can come here and do so. We have all been brought together because of this hell but at least we have a way of communicating with each other.
Perhaps you should seek a second opinion on whether you can be monitored. I can understand why you want to at least know what’s happening in there. It’s your body and your brain and if you want to know, you should be entitled to
Find strength, have hope, just keep going …
Thank you for the encouraging words. I’m So happy yours is resolved now give me so much hope!
Thank you so much for sharing your kind words. Hearing you share is like hearing my thoughts. Its comforting that there are people that understand. You are so strong thank you.
Greetings wnarubi86. I wanted to encourage you to stay strong during this process. One item I think we can help with, the Spetzler-Martin scale is what I think your referring to. You can check it out at:
I’ve been zapped by gamma knife twice and as far as surgery goes, it was virtually pain-free. So far as your job, I’m in a similar spot, but if we don’t advocate, then the medical community won’t know there’s a problem! 
The good news, they are coming around.
Thank you very much for this info. I wanted to know more about what can be done. Thank you so much i will have to read about this grading scale. An you are right and thanks for sharing with me and being uplifting.