I received my MRA results today and they state “concerning for small residual AVM”. Can anyone tell me what the treatment is for this, if any?
Hey tgarcia,
Often with those classed as ‘small’ the recommendation is ‘Wait ‘n’ Watch’ for any changes. Some people can have a small AVM their whole lives without incident, having very little in the way of symptoms and yet for others, can be given the same diagnosis, but have no end of issues. Both the location and blood flow through the region can play a part in treatment options.
For example, if the location is near vital brain structures, leaving it alone may cause symptoms to increase and result in lifelong impairments, in which case, leaving it would not be advisable. But then by the same accord if it’s located deep in the brain, surgery could add additional risks that outweigh the benefit as they may need to travel through more grey matter to actually get to the site. If the blood flow through the vessels is minimal, the likelihood of expansion could be reduced and therefore surgical intervention deemed unnecessary. These are assessments only a neurosurgeon can make, taking into account your personal history and circumstances.
Hope it helps.
Merl from the Modsupport Team
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Hi Merl,
Thank you for responding! I had a left occipital craniotomy in 2013 from a ruptured AVM. From what I’m reading it’s located in the left superior cerebellar hemisphere, the same area as my prior one. I haven’t heard from my neurologist yet. I’m hoping she will refer me to a neurosurgeon. The wait and see scares me. I was told that I was lucky my rupture wasn’t fatal the last time. 
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Hey tgarcia,
And these are the risk that all need to be taken into consideration by the surgeon. You have a history, so that should also add weight. BUT one thing I have learnt is that you can never guess what decision a medico will make. My idea ‘Cut it out’, Their idea ‘wait’ 
I was given the wait’n’watch theory. My view “I have a timebomb in my head and you’re wanting me to wait???” Happy I was not. Only 3 month later, I was under the knife.
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Oh my! Did you have it taken out because that’s what you requested or did you have a bleed? I hope that you are feeling better and didn’t have any issues. I know I never want to feel that pain again especially now that I know what it is. 
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Ohh no. My requests played very little part in the decision to operate. I collapsed, woke up in hospital, then the decision to operate was made, but prior was ‘wait’n’watch’. And, ahh, yes, I did have issues. I’ve now required 6 neurosurgeries and been told the likelihood of more to come. I have a VP shunt, a plastic drain tube, from my brain draining into my intestinal cavity. My idea was that the initial surgery would be all that was required, that was not the case. But when it comes to neurosurgery every situation is different, I have found trying to draw direct parallels from patient ‘a’ to patient ‘b’ near on impossible, every case needs to be assessed individually.
BIG +1 on that one.
Merl from the Modsupport Team
So it’s impossible to say what the treatment options are from here: you’re familiar with craniotomy, catheter embolisation and gamma knife? I’d say which route(s) are suitable are for the neuro to advise on. I’d like to hope (on your behalf) that it might be something a bit less invasive than the craniotomy. I don’t think any of us ever fancy one of those.
Let us know how you get on.
In terms of dealing with the wait, I got myself a medical wristband which helped me not worry about becoming seriously ill out in public somewhere and not being understood or looked after as well as possible. Arming any of those around me with my medical ID, my condition and my wife’s mobile phone number helped me feel that I’d be better looked after if things went wrong.
I think it’s also good to keep your mind busy. I started a project while I was waiting: I had to wait a year after I first suspected an AVM and 9 months after getting a first diagnosis before I got an embolisation. It’s not good to have an empty mind and too much to think about. If you can distract yourself a bit, it might help.
Very best wishes,
Richard
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That’s a great idea. I never thought of that. I see my neurologist on Monday. I had a craniotomy already back in 2013 and I’d prefer not to do that again. I’ve read on the other treatment options and the only thing that bothers me is that they only reduce the AVM by 80% and take up to a year to do it. I will let you know what my neurologist says on Monday. Thanks!
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My daughter had a devastating cerebellar rupture in 2017. The surgeon felt he’d removed it all, but swelling was significant. After the 1 year angiogram we found out she had residual. Another open surgery was recommended to remove it. His reasoning was that a pathway to the site already existed due to the rupture and previous surgery so he felt that removal would go smoothly. I think my daughter’s age (11 at the time) also played a large factor in the choice of treatment as AVM’s can re-grow up to the age of 25. Anyway, this second planned craniotomy to remove the residual was a breeze compared to the initial hemorrhage and emergency craniotomy. She was only in hospital for 3 nights. Discharged to home from the ICU. Only major effect afterwards was increased fatigue for about 6 weeks. No worsening in physical function—she was still very much in active recovery at the time and still in outpatient physiotherapy.
As the moderator said though, each person’s case is unique so you’ll have to see what’s recommended by your neuro team. Good luck and let us know what is recommended.
I can’t imagine one of my children going through this or what it was like for you. I am so happy to hear that she’s doing well. If I’m reading my scan correctly my prior MRA (May 2022) showed possible trace of a residual AVM and this scan says 8 mm residual AVM. My neurologist didn’t tell me about the findings last year. Anyway, I’m hoping it’s reading no change from the prior one. I will let you know on Monday. Take Care!
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Hi T., So you’re dealing with the AVM cocktail we are so familiar with— fear and pain.
I’m the poster child for how not to swallow the bitter cocktail. (Merl and JD seem to be good examples of how to drink responsibly.) Believe me, I’m not making light. It’s my way of saying do your best and try not to swallow more of that bitter cocktail than you absolutely have to. Best wishes, Greg
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Hey Greg,
If you only knew how funny that line is.
In a former post I wrote:
Well, it turns out that ‘the likelihood of more to come’ is going to be happening much sooner than I expected and certainly sooner than I wanted. I saw the surgeon for the annual check up to be told I’ll be needing another craniotomy 
and soon. Happy I am not.
“…how to drink responsibly.” I am SO tempted to ‘drown my sorrows’ 
Merl from the Modsupport Team
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Merl,
I was thinking about you today and thinking that when you go in, please tell us here. You’re just as much a part of this community as anyone and so many of us can relate to what you’re going through, I think we can support you a bit.
Important to do so in your own thread.
Best wishes all,
Richard
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How did you get on with your neurosurgeon consult? I know you were bothered about it but the plan is to talk you through whatever you need.
Very best wishes,
Richard
I love this post Greg; a little bit of humour works great as a chaser to the cocktail.
Merl, Sorry to hear that. If the surgery is in AZ let me know so I can visit you. Best wishes, Greg
Thanks @GregF
But you’ll be needing a plane ticket and a passport to be visiting I’m in Australia, my closest city is Adelaide, which about 14,000km (8700mi) from Arizona. So, it might take you a couple of days to get here 
Merl from the Modsupport Team
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Merl, if you send me a ticket I can meet up with GregF en route! While not there in person, we will all be there in spirit for all you add here! Take Care, John.
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When I know more, I’ll be sure to do that Richard, but presently… …I wait.
Merl from the Modsupport Team
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Update! My Neuro states that my AVM is really small so she recommends the Wait N Watch and will redo an MRI yearly. GregF…I will take your advice and enjoy my life 
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