Hi all,
First I want to say Happy New Year’s to everybody. I’m so happy to have found this community. I have been reading through my MRI report and my avm is on my brainstem and is 3.7 x 2.8cm x 4cm. I’m not sure if I’m reading this 100% correct. Is this considered a large avm? Has anyone had an AVM this size? I look forward to hearing from everyone.
Sal,
3cm to 6cm is considered “medium” in terms of size but if you’ve been told it is a Spetzler-Martin Grade 5 (and there are other grading system) then grade 5 is the max. This is not good news and would be a good reason why surgeons would say “I wouldn’t operate on that”.
See the grading scale here :
http://www.avmsurvivors.org/t/spetzler-martin-grading/18027
If this is the scale being used for you, it suggests that they are considering your AVM to be large (3 points) on your brainstem (1 further point) and with deep veinous drainage (the final point, making 5 in total).
If that is the case, I can see why “do not touch” is the recommendation. This is hard news and only my interpretation of the information you’ve shared. You should definitely confirm this with your Neuro or by all means get a second opinion from Dr Barrow or others.
I hope this helps understand.
Remember, you are not alone in this and there are others here with a similar situation.
Very best wishes,
Richard
Hi there Sal 
Happy New year! This truely is a wonderful community, wonderful moral support here and mutual understanding 
@DickD: you beat me to linking a copy of your post- a very useful link!
My AVM nidus is 4cm in diameter. Specialists have described mine as on the “larger end of medium” relatively speaking. My AVM was rated as Grade 4 using the Spetzler-Martin grading system by the neurosurgeon who first diagnosed me.
It is a little confusing according to the dimensions given on your MRI report as to why your rated as a “5”. Will you be having a follow up appointment soon with your consultant? I would definently ask them to explain this rating and your MRI report.
For me due to the positioning of my AVM in my left occipital lobe, I was told craniotomy was not an option. So I was offered to take the embolisation route which I am starting later this month.
I see from your posts you say you have been told by your neurosurgeon that your AVM is untreatable by craniotomy. Once/if you have your angiogram, they may find gamma knife or embolisation to be an option for treatment by sending your scans to specialists in this area.
Another thing… my neurosurgeon measured my AVM as being between 4.5-5.5cm when looking at my MRI. When looking at my angiogram scan (higher defininition than MRI) the neuro-radiologist measured it to be 4cm. So you could maybe get a better understanding once/if you have an agiogram in regards to sizing.
If not, as @DickD said, you are not alone, there are many people on here who live happy and long lives with their AVMs untreated. It is worth seeking treatment if a recommended safe option is available ofcourse. But if it is not, and risk of treatment outweights risk of the AVM - you have your AVMer family here always for moral support, your medical staff to help you manage any symptoms and to give you advice. You will keep making the most of life, the sweet moments and your loved ones.
Very best wishes and hugs,
Corrine
Thank you both for replying. I was reviewing all my material and I don’t understand how this could possibly be grade 5. In my opinion I think it’s a grade 4 AVM. Is treatment possible for a grade 4 arm? After speaking with the doctors assistant today, my arm is located in my brain next to the brainstem. I also have a venous malformation on the right side of my head/neck. Again I want to say thank you for replying to my question and I am so happy to have found this website. I’m so amazed everyday by the stories I read, they have also been so helpful for me in understanding my condition. Thank you and I look forward to reading your responses.
Sal,
For your question on whether treatment is possible - I couldnt possibly tell you, that will be for the specialists to advise on! However hopefully with detailed angiogram scans and opinions from specialists in the differant treatment options of AVMs - you will get a clearer understanding of what options there may be.
I know it is a very frustrating wait to get more information, patience is one of the most difficult things during this journey. However, we are here for you to get through it, to support you and make sure you know you are not alone.
Keep us updated, we are rooting for you! 
Best wishes,
Corrine
Hi Sal,
It’s a grade 4 avm close is size to mine and in the same location!
I don’t check in here alot but if you feel like you need to speak more about it, feel free to email me on ■■■■■■■■■■■■■■■■■■■
Ahmad, Sal,.
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Hope this helps,
Richard