Hi My name is Sarah and I am a new member, on behalf of my husband who is trying to come to terms with his diagnosis and at this stage doesn’t want to do any research. I however want to know everything and read as much and as many stories as i can.
My husband is 39 and has been diagnosed with a grade 5 AVM in his right frontal lobe, yesterday he had an angiogram to determine more details and we have found that its 5cm big and has a couple of aneurysms along the blood flow. We had initially been told that surgery or radiotherapy treatment wouldn’t be an option for him due to the AVM size and location. But had a possible option of embolization ( i think these are the right terms) but since the angiogram they now believe a ‘do nothing’ approach may be best or less risk.
Reaching out for similar stories or if anyone has had treatment for a grade 5 AVM of this nature. Thanks in advance and its been really comforting reading all the real life stories on this forum.
Hi Sarah, Its not all bad news both you and your husband should have hope and faith that everything is going to be fine. My AVM was 3CM in the right temporal lobe (near the frontal) and was removed after I had a bleed (2 separate surgeries) After the second surgery which was 10 hours long, I was out hospital after a week and things started going back to a normal life, I had no issues after surgery but was very tired, sleep helped speed things along for me and I was back working my desk job after 8 week, this was a little too early but I coped. Docs never told me what grade mine was, But did say that it was superficial since it was on the surface of the brain, I guess what I’m trying to say is that everything will be ok, Sure there may have to be some small life changes, But nothing that isn’t easily possible (Like less alcohol and more Rest and relaxation no lifting of heavy things at all that cause him to strain etc, But the doctors here in the UK are very good at treating AVM’s and your husband is in safe hands. Take care
Martin.
Thank you Martin for your reply. i have read some of your posts already and your positive attitude is really great and i know the right thing. I keep saying it will be ok. Thank you for this forum I cant stop reading and arming myself with as much information as i can. Good to know your doing well. You also take care. Sarah
Sarah, Thinking positive especially when everything seems so unfair is very difficult, For me late at night I was alone as my wife would go to bed early, I would think about worse case scenarios and these times were tough, But The more I thought everything will be fine, the more I believed it, and the easier it got and after months I was sure that everything would be fine 
. And it was fine for me, Don’t even look back now except when facebook reminds me via memories .
Martin.
Hi Sarah. Welcome to the site. I also have a 5cm AVM but mine is in my Cerebellum deep in my brain. I am desperately sorry that your husband and you are having to come to terms with all of this. It is truly shocking when your AVM is diagnosed. Due to location and size I have also been advised that a ‘do nothing’ approach is best. Surgery isn’t an option at all since it is too risky. They could try Gamma Knife but only with multiple embolisations first. And there would only be 50% chance at best that they could get it. So I have decided to be brave, accept the diagnosis and live with the thing. So far, so good really. It has not ruptured and doesn’t give me much in the way of deficits. I try to look at the positive in everything and believe this really helps. Very best wishes to you both.
Welcome Sarah! You and your husband are going through a lot right now, but in time things will start to make more sense. Coming to grips with having an AVM is a hard pill to swallow. Mine was 4 cm in my Cerebellum. I had the Gamma Knife procedure in 2015 as it was the only option open to me. Finding this network of Survivor’s is truly a blessing for me, you, your husband and everyone else tuned in to this site. We are pleased to share information, and encouragement. I wish you and your husband all the best on your AVM journey. We are here for you.
Sharon D…
I am also having SM GRADE 5.had Gamma Knife in 2014. Right body disabled post GK. Going through hell routine. But things will be normal and fine soon. Just prayers and medication will help.
Hi Sharon. Did your GK work please? Where did you have it done?
Hi Lulu:
My G.K. procedure most definitely worked! My last 2 MRI’s and MRA showed no sign of the AVM. During my last scans in May, I was told that there was no trace of it, but to be absolutely sure, they want to test one more time. I got a call yesterday telling me that my hopefully last Angiogram is scheduled for August 21, 2017. If all is well, this will be my last MRA and my final goodbye to the Monster in my brain. I don’t want to get overly excited because life has taught me that things can change in a hot minute. As such, I’ve made up my mind to keep on pushing if my results are not as great as I hope. My G.K. procedure was done at Yale New Haven Hospital, in New Haven, Connecticut. My Neurosurgeon is Dr. Gunnel and Dr. Bulsara. I wish you the best of everything on your road to recovery. How is it going so far?
Sharon D…