Hello all!
I am new here. My wife discovered her AVM on July 25th as a result of a CT scan after a serious of very bad migraines. She then had an angiogram the following day. We feel very lucky that it was discovered when it was. The AVM is on her left frontal lobe. She hasn’t had a bleed. She has noticed over the last few years a lot of problems with memory, concentration and losing her words.
We finally met with the neurosurgeon last week. Apparently, it is quite large (4-5 cm). She said that it is too diffuse for embolism and too large for radiation. She said surgery was the only treatment option and it would likely be a long recovery with a 50/50 chance of some problems afterward.
My wife isn’t going to rush into anything but definitely wants to take an active approach to dealing with it, rather than just leaving it untreated indefinitely. We just don’t really know where to go from here. We’d like to get a second opinion, but not totally sure how to go about that. The doctor we saw is the only specialist in our area. We also have two small children and just wonder how much all our lives will change over the next few years. I know that no one knows what will happen, but any thoughts/advice on what to do or expect next would be welcome.
Thanks so much!

In Canada this seems to be the place people go to with complicated AVMs…
Not exactly near you but could your wife 's medical records be sent there?
Another option is Boston’s Mass General Hospital. They specialize in Proton Beam Radiation. Some members have gotten permission from their governments to go there.

I am so sorry to hear about your wifes recent diagnoses. Many people on here have got second doctor. I am sure you know that its essential to have a doctor who has experience in this field not a normal neuro has the expertise.
I had a DAVF behind my left ear and I had seven hours of embolism and it did hurt afterward but in the long run my memory was better and I could sleep!

Hi Ocean7 and Welcome to the group.. :),

I can tell you from experience,.. it's NOT too large for radiation. Mine was 5 cm when I had gamma knife radiation done. I don't know how things work in Canada but, here in the USA we can send our records to a dr or a hospital and they will give us their opinion. I hope you can do the same thing(?)

I can tell you some precautions your wife needs to take:
* - Don't do anything that raise your blood pressure and your pulse rate for any length of time.
No running, jogging, playing sports.. those kind of things.
* - Don't put your head below your heart level for periods at a time. I was told to not even go
swimming. Wading in the water was ok. Just don't swim.
* - Avoid stimulants, such as caffeine as much as possible. As that to can raise your pulse
rate. I don't avoid it completely myself but, I do limit my intake (wink).
* - Avoid ALL blood thinners. Like aspirin and ibuprofen. Those are absolute No - No's.
* - Don't over do it! If you feel you need to rest a while -- You REST. Take a break.

Something else to keep in mind is: Blood vessel walls are thinner in an AVM than what they are in a healthy blood vessel. AVMs also don't have corpuscles. The combination of these two is why we have to be extra careful when living with one of these.

I hope this helps you and Good Luck. It sounds like she has a good attitude about this and being proactive is going to be a good asset for both of you.


Thanks so much everyone. This forum is such a great resource. I spent many hours reading before finally signing up. I’m so glad it’s here for all the information and support. We will be pursuing a second opinion before we proceed with any treatment. Thanks again!

I should also add that this news of the AVM has come while we are in the middle of a process to adopt a 9 month old baby (we have two other adopted children). We are feeling hesitant now about whether this is the best time, and need to decide very soon whether or not we’re going to go ahead with it. All the unknowns are so stressful!

My other halfs AVM is exteremely large 7-8cm and he has undergone staged radiotherapy treatment, in 3 stages. The risks of surgery were too high, and we also have two young children so didn’t feel that leaving it untreated was an option. I might add we are in the UK so procedures may vary. But certainly get at least two or three different opinions from different doctors. These are big life changing decisions you need to make and you need to make sure you have all the options available to you.
I might also add that I discovered I was pregnant at the same time we found out about his AVM, and whilst it was hard work the baby certainly gave him the incentive to keep going through all the hospital appointments and radio. He was also diagnosed through migraines.

Hi, Ocean7 - my craniotomy was done in Oregon - on the west coast, so it's on the wrong side of the continent relative to where you are. I think your desire to get another opinion is a good idea, though, - even if the recommendation is still for surgery with a chance of residual problems you know ahead of time, and can plan, like you're already thinking about. My bleed/surgery was an emergency (completely asymptomatic before), so I had no prep time. I have obvious deficits, but I just want to encourage you that it's okay - don't be scared. I've seen lots of people, e.g. on this site who raise families and run households while dealing with deficits. They find a way bc they must. It can be painful, but it works. A few things to think about: 1) How to talk about this with the children. You might need to consult professionals on the best way to talk about this with them and get them used to the idea that Mommy is going to get some type of treatment. 2) During recovery time, or possibly longer term, if you need it, what kind of resources can you procure for help running the household, and how much of this would be covered by insurance vs. out of pocket? e.g. a nurse who comes to the house, and who can help with transportation, groceries, light housework (I've seen elderly people employ a helper like this, and seen ads in magazines at rehab), or a non-medical helper, like a maid service weekly or monthly, or simply friends...3) YAY for you both for building a family through adoption and loving/welcoming these children into your lives. Planning for #3 is so exciting, but since I have no parenting experience, I can only wonder - it would probably generate a LOT of excitement and stress for everyone - the parents, AND the kids, at a time when you're already facing major changes...I suppose the question is if you would be able to provide the standard of care you would want to at this time without compromising the care/comfort of your wife (given that she will be seeking treatment) and kids (they would probably already be in a tizzy). Okay, that's all for now - bye,

Hello Fellow Canadian. :) I live in Ohio but I am originally from New Brunswick.
First, I am so sorry you are dealing with this, despite being very happy you found this group :)
You are in the right place, and it makes me feel good to read that you are being pro active in your search of what is best for your wife.
All I can really advice you with is what others have already told you... do NOT stop at one opinion only. Neurologists/Neurosurgeons all have a very vast diversity of opinions when it comes to conditions like that. The key is to research and find one that specialize in AVM. By that I mean, not only know what it is, but is CONFIDENT about treatments plans. If your neuro spoke to you in a way that left you with as many questions coming out than going in, nothing very established but more of a "lingering" feeling... You probably have a neuro that has knowledge of AVM, but not much experiences... Do not be afraid of looking outside of your geographic zone either. Sometimes, you have to travel to a different province. I was told inoperable many times here in Cincinnati (it was in the brainstem) with 95% chance of severe deficit, and at the most 5 years before I die
or become a vegetable. I traveled 2000 miles after I found a surgeon for the surgery. He was the most confident in the outcome. Neurosurgeons will not play games with you. They wont offer a surgery confidently if they think its going to do more harms than good. Its so important that you dont stop until you find one that is obviously knowledgable, experienced, and confident :)