Hi, I’m Jazz. I’m 27 years old and I’ve just been diagnosed with a right occipital AVM. I’ve suffered from migraines for years. Lately I’ve had cloudy vision in both eyes, though it’s worse in my left eye, and a constant headache for weeks, which is what has led to my diagnosis. I don’t know much right now, and have no idea what my options are for treatment. I have an appointment with a neurosurgeon next week. I have a million questions, but I’m looking for some advice on what to ask, what to consider, and just any guidance for someone just starting out with this diagnosis. I’m trying not to overwhelm myself too much before seeing the neurosurgeon, but it’s hard.
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Honestly, you’re at the most difficult stage of all this, as far as I’m concerned. I completely get the not trying to overwhelm yourself: I found that when I first visited here, I found about half of the stories, the information that I found out to be helpful and half of the time it was increasing my fright, so I’d say to you this is normal and I think the sensible thing to do if you find it getting too intense, take a break away from here. What we do here is intended to help, so if it isn’t, just take a break.
Things to ask about… we have a list of doctor questions somewhere, possibly in the AVM101 category under Help.
As for my own views, I wanted to know what it looked like (like how big) and how invasive a thing it was. I’d seen a horrific image of an AVM on the internet and was worried this thing had taken over half of my brain. As it turned out, mine was more of a shunt than having any kind of nidus but it still needed to be dealt with. The doc showed me my MRI and talked me through it.
The next thing is “What might we do about it?” and it might help if we ensure you understand the answers that you get back from that. I’ll talk a bit about that in a minute.
Mixed in with the “What might we do about it?” becomes the risks associated with leaving it alone and the risks associated with doing something about it. Overall, I think you want the doctor to cover off the risks it poses and the options for intervention and the risks associated with those different types of intervention.
Ideally, the doc will do a multidisciplinary meeting with other practices to agree with those other disciplines the recommended route forwards for you. Ideally, that has happened before you meet your consultant so that they give you a balanced view of the recommendations.
So what are the ways these things can be dealt with?
The most obvious (and the one we all think of) is open surgery – a craniotomy. Take the lid off, clip off the naughty connections and put the lid back on. It seems to be a very successful method but when the AVM has deep “feeders” in among brain tissue, you can do more damage than you’d want by this method, so the doc may propose a different method in such cases.
The next method that is used is a catheter embolization procedure. This is to feed a very fine tube in at your femoral artery at your groin or your radial artery at your wrist, navigate that to the AVM by using x-rays and inject glue or other embolic material into the AVM, closing it off and resolving the issue. This sounds perfect but it does still have risks and it cannot be used where the arteries involved are tiny. So it’s good for the larger vessels. Often, an embolization is done as a combination prior to open surgery. The advantage of embo+surgery is that it reduces the risk of a bleed during open surgery.
The third method for brain AVMs is to use radiotherapy. Where the AVM is in a difficult to get to location for the other methods, an array of zaps of radiation, focussed upon the AVM scars the AVM and causes the vessels to close up over time. If you think of it like a dandelion head with many zaps from different directions, all coming together at one point, the radiation only amounts to enough to act at the point of focus. Again, there are risks associated with the procedure, principally around the fact that you’re usually focusing on core brain stuff, there may be some collateral damage (true with all of the approaches) and often some oedema (swelling) which can be treated. The radiotherapy takes much longer to have its effect.
The other possibility is that actually, it is best left alone. If the AVM is in a particularly dangerous location and attacking it by any of the methods is liable to leave you with significant deficits, the doctor may propose to “watch and wait”. This seems less frequent for something in the occipital lobe but is always a possible recommendation.
Does that help a bit?
Feel free to ask anything you need. I’ve been there and so have hundreds of others.
Very best wishes,
Richard
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Thanks Richard. I appreciate the detailed explanation of everything. I’ll feel better going into my appointment with some information. I’ll have a look at those questions as well. I’m concerned with where the AVM is that I could end up losing some or all of my vision permanently, but I can’t really know those risks until I learn more about my particular case.
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Indeed. Loss of some segments of peripheral vision seems a more frequent risk with the occipital lobe though I’ve seen a story recently where it was not clear if the outcome for one person would be temporary (due to oedema) or more permanent. I think that was @Indalo.
Mine was in my right occiput but very much on the surface, so I’ve come away with no deficits whatsoever.
Good luck and do let us know how you get on!
Richard
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Hi Jazz,
Sorry about your diagnosis, as Richard said this is a tough stage getting your head around it and up to speed with your options.
I’ve just had (a week ago) a complete embolisation of a large right occipital AVM. I had already lost my bottom left peripheral due to a bleed five years ago. My procedure went well and I feel fine but I have lost nearly all my left peripheral since the procedure. The surgeons feel that it’s likely to improve over the coming weeks and months since there was no evidence of ischemia or bleeding, just edema from the procedure. I really hope so, we will see.
Every AVM is unique, my only advice is to take your time assessing options, and DON’T PANIC. Your bleeding risk is statistically very low in the short/medoum term, especially since you haven’t had any prior bleed whereas procedural risk is all taken now, up front. I had a bleed, was diagnosed and then tried SRS as the lowest risk option, had a five year wait and it didn’t work for me. SRS success rates are high now, around 70-80% for AVMs that can be treated in a single session, I was just unlucky. I then spent six months bottoming out my remaining options. My AVM was high risk (bleeding, associated aneurisms etc) and very challenging surgically so I opted for embolisation over open surgery, and selected my surgeon carefully……but it was a close call and I don’t know for sure which would have been best in the long term. Whatever though, I’m comfortable that the decision making was cautious and not rushed.
It’s likely that your perception is that your left eye is worse because your left side is affected (contra side to the AVM) but you may find through testing that your field of vision is impacted equally in both eyes, which seems most commonly the case. It really depends on exactly where the AVM is causing issues in the optic chiasm.
All the best, happy to answer any questions
Regards
Jonny
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Hi Jazz,
I am sorry that you´re going through this right now
You´re me, a year ago.
In September last year, I was admitted too with severe headaches and vision loss when they discovered an AVM in my right occipital lobe.
It´s a rollercoaster of emotions and I remember being so scared at the start.
As Dick said, when you just find out is the most difficult stage and from now on things will fall into place.
I am sure you have done this already, but I wrote every question and symptom down to discuss with the surgeon. It´s also helpful to look back at later.
I am unsure what is available in Canada, but I joined a charity for young people with brain injuries they organise support groups and can help you sort things out with work etc.
I wish I found them sooner as I was very overwhelmed too.
Good luck and you have lots of people on here for support!
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Don’t pump yourself up prior to the appointment too much. Focus on accepting it’s something you have to deal with that most other people do not. You want to know the size and major features. Each AVM gets a somewhat robust description. I don’t understand all the medical gobbledygook myself. My AVM was in my right parietal lobe and was large, 4.1 x 1.9 x 5.9 cm. You may have a follow-up imaging procedure called an Angiogram. This procedure isn’t so bad. Unless, you are allergic to the iodine contrast dye. Try not to get wound up until you talk to your neurosurgeon. My first Neurosurgeon had no bedside manner and I didn’t like her. Try to get paired with someone you can stand. My second neurosurgeon was a dorky Indian guy. I liked him & we got along. This forum is a good place to ask for a recommendation. The other thing I would keep in mind is that if it weren’t for symptoms you wouldn’t know you have an AVM. You can live with it peacefully for the rest of your life unless it ruptures. That being said, it’s not something you want hanging around.
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Hi Jazz! Welcome to the group. My name is John, and I also had a right Occipital lobe AVM, except in my case, it turned out to be an AVF. An AVF is an Arterio-Venous Fistula. I’m not sure if treatment options are similar, but my AVF was totally embolized using the “glue” method, and they were able to do this endoscopically. That is, they inserted a catheter into my right femoral artery, threaded it all the way up into my head, and dispensed the bio-compatible super glue that way. No craniotomy necessary, and I got all of my vision back. It was so called “field deficits”, or blind spots, in my left eye that led to the diagnosis. Anyway, feel free to reach out if you want to talk about things. I would be happy to share my experience, even though the location may be the only thing we really have in common. My embolization was back in 2010, and I have since gone on to participate in extreme sports and earn two black belts! I really hope for a similar outcome for you. Best of luck!
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This is one of the hardest parts about being diagnosed… I think the best advice is to ask about what procedures are offered to address the AVM, such as surgery, radiation etc and the risks associated with any of those recommended procedures vs not doing anything at all.
Rest assured this beast is much more common these days than when I first came across mine & the medical technology has advanced so much since.
Please keep us posted on your journey & use this site to help with any questions you may have… God bless!
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Hi Jazz,
I can relate to what you’re going through. I was also recently diagnosed with an AVM on my right occipital lobe. I’m contemplating a craniotomy to remove it. I suffer from migraines with aura. This year, they have worsened…I had a fainting episode and vomiting which prompted the MRI. Feel free to reach out if you have any questions. If you can, seek out a few opinions from AVM specialists/Neurosurgeons. Barrow Neurological institute is a great place to start.
In solidarity, best wishes.
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