Hi, I’m a new member. I have an avm located in my frontal and temporal lobe (on the left). The size is 4.0cm x 5.0cm x 4.6cm. Anyone know if this affects my treatment options in a way where I’m likely going to be limited in what I can decide to do to treat it? I’m a little scared of gk personally. And being limited to gk due to my location and size. I’m seeing a neuro this Monday to talk about options. I can’t tell if it’s really big or medium size… But I know it isn’t small… Thank you in advance.
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First off, welcome! As you will see commonly here, great you found us, too bad you had a reason to look! I had a left temporal AVM that decided to show itself by bleeding, but much smaller than yours, and ultimately treated by GK. Small, but on the inside if he lobe which presented a variety of access challenges.
I would say get your list of questions together for your neuro team. There are some great options in the US, incredible expertise! The initial stages are incredibly difficult to manage. Lets face it, when we are told we have an AVM, we say, a What? Lean on our group here, a fantastic group of people with a lot of experience. Let us know where you are exactly, we will have folks here in the general area that can provide some advice on places to consider an opinion.
Thanks for joining us, and I hope we can help you navigate this. Take Care, John.
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Hi
From what I can tell, it’s “medium”. See
It is the other aspects of the score that probably will affect the approach that they take, so if it is nicely on the surface, nothing deep or dangerous then open surgery may be an option. If it is deeper or near vital stuff, the score goes up and that may tend towards radiotherapy as the better option.
Just ask the doc why they are recommending the route(s) they do.
Ask anything you need.
Richard
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Thank you for the warm welcome from both of you. It means a lot, and this is very helpful 
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Well, I saw a neuro but guess what! It wasn’t to discuss treatment options. It was my original appointment with a neuro to discuss my very first MRI results. I wasn’t going to wait until Mar 31st to see a neuro because I was very worried to begin with… So I decided to send my results to a bigger city near me and I got to see a neuro much quicker. I had another MRI, an EEG, and an MRA (no dye and dye for both scans). And a visit to confirm my diagnosis with that neuro. Just… I forgot to cancel the one set for March 31st originally. 
I forgot so hard I confused it for an appointment to discuss treatment. It wasn’t exactly a waste of time though… They gave me a new size (MRA specifically): 4.0cm by 5.0cm by 4.6m. I even got to see the AVM itself MRI and MRA form. It’s like the size of my eyeball and looks deep in. The location worries me too. I feel like I won’t be a strong candidate for a craniotomy and I feel kinda down. Anyone have advice in finding peace?
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Hi.
I don’t think there’s any good reason to go to a small neurosurgery practice. When you’ve got your reports, scans etc, consider sending them to Barrow Neurological Institute at Phoenix AZ and see what they say. If they’re not too far to travel, you might go and be seen there. I’d say we have them down as world class and you may as well have world class care. If it does turn out to be big and deep and complicated, they’d be the kind of guys you’d want to see. We also get good reports of Stanford (I assume somewhere near San Francisco) and there are other good places out West.
In terms of rationalising this stuff with ourselves, you’re absolutely right: you’ve got to rationalise it with yourself. Life has taken an unusual and unwelcome turn, the sky has gone dark and the sides of the valley are so high you can’t tell which way you’re going or how long it’s going to take to get out of here. It’s tough, ok? It’s ok to feel set upon just now because it’s a difficult situation to be in.
My constant advice to my wife whenever she has something health-related (and I follow the same advice myself as well as anyone can) is not to assume the worst about a health issue. You can spend a lot of your life worrying about the What Ifs and life is not for worrying about the stuff that doesn’t come to be. The way forwards looks very unclear at the moment but it doesn’t mean the path stays in this dark valley. My wife fails abysmally at this optimism and at every health trouble worries herself stupid for the several days needed before she sees the doctor. It’s not a way to live, so if you can, be positive about your outcomes. I think it’s the better way.
Now, I had my discovery at about the age of 50. It hit me just as much as yours is hitting you but honestly, I rationalised with myself that I had not worried a jot about my health for fifty years and that’s a luxurious position to be in. If mine signalled the end of a good life, I’d already had fifty years and surely nobody can sniff at that. Twenty-something is unfair perhaps, but I’d still be positive about your prospects. Other than my “fifty years is a great mark” rationalising with myself my other one was that we all assume that we are healthy, that the people around us are healthy but it isn’t true. My own theory, which I used to justify to myself about this unwelcome fork in the road was that in reality, everyone will have health challenges of one kind or another as they go through life. Everyone. It’s just that some people make it to 90 before they discover what theirs is. So I shouldn’t be surprised to find out what mine is. It’s something to be expected and I was naive to go through life believing otherwise.
So I hope one or two thoughts might help. It is obviously much tougher to be thrown this sort of thing in your twenties, so be easy with yourself. Ignore anything I’ve said that doesn’t help and maybe take on anything that might. It’s freely given and free to leave alone.
Best wishes,
Richard
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Thank you, that helped my nerves a bit. Might you know how I would go about sending my reports and scans to Barrows? I don’t think my insurance will even cover them and I’m not exactly in the best of financial situations right now… Although, I’m familiar with the second opinion option. You pay $100 to get a second opinion but I think that’s after I get my first appointment talking about treatment options (which is going to be until the 21st…I’m going to try to push for an earlier date though)?
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So far as I know the total cost of the remote second opinion is just $100 – an easy way for them to get you in the door! But can be a very helpful step. You’d upload your reports and scans through their portal, once registered.
I think the information starts here:
And the other major neurosurgery practices in the US offer the same sort of thing, so if you prefer, choose a different practice. I only mentioned Barrow because it might be your nearest.
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Yeah, it’s my nearest. Might you know if I can do this as early as me acquiring my scans or is this only supposed to be done once I get an opinion from a specialist for the first time? Since it says “second opinion”.
No idea. I’m sure they will form their own opinion rather than rely on your other doctor, so I’d think it is the imaging and any image reports that are important.
While these things feel urgent to address, in reality neurosurgeons are very laid back about pace. Unless your existing doctors are telling you that urgency is a thing, I wouldn’t feel the need to rush.
Equally, radiotherapy takes years to have an effect, so rushing now is a small step in the overall process.
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I decided to wait until the 21st. Then I’ll seek Barrow’s opinion. Maybe even a third. I’m going to get the CD where my images are at in the mean time. Despite this, I’m currently a bit scared of it growing in between the opinions and actual treatment…
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My belief is that most regular AVMs are believed to be congenital in origin, that is to say that they are not hereditary but part of your formation in your mum’s womb – just part of the random magic of how you were knitted together. So most likely you’ve had that AVM since before you were born. They do develop further over time, which is often why we discover them.
My particular AVM was a Dural Arteriovenous Fistula (DAVF) and these may be more acquired than congenital. Mine was definitely changing pretty rapidly as I got different effects over the 1½ years from when I first found it to when I got it embolized, so I can relate 100% to the worry! Even so, my consultant was very cool about it and I sat on his elective surgery list for over four months, waiting to become his most urgent patient! UK healthcare is free but you have to wait in line. Obviously, they prioritize patients but you have to trust the team to prioritize appropriately as well as communicate with them any changes. I found it very challenging. I was undoubtedly a noisy and bothersome patient! 
So talk to your doctors about their assessment of urgency if you’re worried about it (rather than taking an anecdotal view from my experience) but I expect they’ll be pretty cool about it. They usually express it as a risk of haemorrhage as a percentage each year, increasing by a few percentage points annually.
I think it would be fair to suggest that most patients in the US get at least a second opinion and a good proportion get a third. It seems like good practice in a “system” where it falls on your shoulders to go and find an appropriate expert. In the UK, I guess we are expected to trust the machine and we get allocated to our nearest team, unless they assess that we need referral to a national centre of excellence.
If you’re bothered about how to get through the intervening days or weeks or months, there are some small things you can do to help yourself. Waiting is certainly part of the game over here.
Very best wishes,
Richard