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Spouse just diagnosed - what's next?

Hey there @jquiceno and welcome! While I am in no way medically qualified to advise, I can speak from experience and say don’t wait! If you have questions, ask them but understand your wife’s medical treatment team will be best to answer those types of questions.

With respect to waiting, I do want to refer you to a study completed a few years ago entitled ARUBA. (A randomized trial of unruptured brain arteriovenous malformations). In it was stopped early because of the number of untreated brain AVM that bled early.

Though not in that study my AVMs actually bled (one in 2000, one in 2010) prior to me getting treated. As a nonmedical but highly “interested” unwilling volunteer, it is imperative that you get this dealt with. I’m not a doc, nor will I ever be, but please consult your treatment team for a list of options. Blessings as you continue!

Also, gamma knife or cyber knife may be an option.
https://youtu.be/7ScVu-ZGfu8 <- gamma knife
https://youtu.be/_HKvmcHH05E <- cyber knife

Welcome to the group jquiceno and my thoughts are sincerely with you while you digest this new situation.
To address it, because it’s been put out there, there have been many studies done on AVMs and more than one on unruptured AVMs. If you are going to go that route I recommend you read far more than just one to get a better overall picture. It has been a few years since I have read any so couldn’t recommend.
As to the 2% risk, when an AVM is discovered the count starts and in most cases increases by 1-2% per year depending on the AVM, ie., year 1 might be 2%, year 2 might be 3%, year 3 might be 4%.
Bleeding is NOT a certainty. Many AVMs do not bleed.
Seizures are electrical activity in the brain that can be caused by pressure from an AVM impacting on surrounding nerves or by damage caused by bleeding or medical intervention. Seizures are more in the zone of Epilepsy.
What you are referring to when talking of a bleed is a rupture. This is when one of the veins in the AVM develops a split allowing blood to flow out into the brain. This split will most often close within a couple of seconds. The brain does not like blood and it damages the brain. How much blood is released into the brain and into what part of the brain is the issue. A bleed may have little to no side-effects or those side-effects may be catastrophic or even fatal. As you would have seen most survive their ruptures but may be left with further medical issues which require rehabilitation or medical intervention. Sometimes these further issues cannot be fixed and must be accepted.
If an AVM is untreated - there is nothing you can do to minimise risk but you should know that there is nothing that you can do that would maximise risk except with inappropriate medications or some chiropractic adjustments that would send a rush of blood into the brain, particularly as your wife’s AVM is deep brain and as such is quite protected.
As I said earlier the consequences of a rupture will vary considerably depending on the amount of blood released and the location where the blood flows.
If your wife has reached the age of 40, with an incidental find of the AVM and has had no symptoms then her AVM may be quite stable and may never rupture.
The risk of treatment is always weighed against the risk of rupture with one outweighing the other and thus deciding the course of action recommended. Treatment can carry small to potentially very serious risks.
If you are unsure then I would recommend a second opinion but sometimes they really are just best left alone, particularly when found later in life (40 is late for an AVM discovery) and with no symptoms.

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@jquiceno

Hello! Welcome to avmsurvivors!

I feel the other guys have probably frightened you to bits. I’m going to try to take you a different way. The truth is, everything depends on your wife’s specific situation, so we can only share knowledge we have about what has happened to us or what we have read about ourselves.

I think the first question to ask your neurosurgeon is why they are recommending “leave it alone”. I suspect it is because being a large AVM, deep in the brain, it may be more damaging or more likely to do damage by trying to operate on it than to leave it where it is. So, ask that question. The objective of any surgery or intervention is to give your wife a better outcome than the AVM being there but it isn’t always better to tamper.

@randombeggar has pointed you to the ARUBA study. While that study was not perfect, it did conclude that surgery is not always going to make a difference. (That’s my reading of it, anyway) so while we like to believe in surgery as an answer, it isn’t always.

You could seek a second opinion. Often different doctors or practices take a different view on these things, so getting a second opinion is definitely worthwhile. Equally, while detecting an AVM is a frightening and important discovery, it isn’t necessarily urgent. The AVM will have almost certainly been there for the whole of your wife’s life and it hasn’t bled so far, so while stats indicate an increased risk over time, it doesn’t mean that life stops this year. No.

I disagree with Christine slightly about “you can’t do anything about it” as self-help. It depends perhaps on your wife’s own situation but in general, increased blood pressure is going to drive an increased risk of a bleed. So, she can take actions to avoid stuff that puts her blood pressure up unreasonably. No lifting of heavy stuff: no helping with getting the wardrobe upstairs or pumping big iron in the gym perhaps. I was advised to cut out coffee/caffeine, chocolate, alcohol, smoking and anything else that spikes the blood pressure. I have had my AVM glued up and before I had that operation, my AVM was developing a bit rapidly (we think mine was acquired rather than congenital because of where it is) and cutting out the coffee and chocolate made a real difference to how my head felt. Since mine developed a bit rapidly (over 2 years) the benefits of reducing bp faded a bit quickly but I think it could help your wife.

The main thing is not to panic. Not everyone has an AVM operated on and not everyone has the same views as to operate / don’t operate. We shouldn’t advise you at all but try to share with you our experiences and the information / advice we have gleaned over the years.

Don’t panic.

You are among friends.

Very best wishes,

Richard

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And take your time getting the information that you need.

… Sorry… had to dash off before saying everything I wanted :blush:

Getting a diagnosis like this rocks you but actually, with time, it becomes more ok. It is shocking now but I’m sure you’ll both get more comfortable with it and you’ll get back in the groove of “what are we going to do…?”

Just take your time.

Ask anything.

Obviously, if your wife does get any sudden, significant symptoms, go to the ER but meanwhile…

Chill.

Hope some of this helps. Very best wishes,

Richard

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You’ve added a few things in there I was trying to say which may not have come across in quite the same way as intended.

I was surprised that you had received the advice on lowering bp as I had asked those questions myself and had not seen anything to counter that, but maybe the difference was in the specific case of my son versus what could be done with others. I’m am pleased to hear that action can be taken to reduce the risk in some instances.
Did you suffer a head injury that led to yours? It doesn’t happen often does it?

It’s truly amazing what can become the new normal in time. A testament to human beings ability to cope.

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I just picked up on “Don’t panic.” Kudos to the late Douglas Adams, intergalactic hitchhiker extraordinaire.

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welcome to the site! an AVM diagnosis can rock your world and getting as much information as you can is important. Trust your doctors but you must also be your own advocate and ask very pointed questions but you have to be willing to accept the un-sugar coated truth and make the best decisions for your situation based on that information. Since most brain AVM 's are formed around birth the 2% per year risk starts at day 1 not the day they found it. mine ruptured at 50 and I never had any idea it was there until it ruptured. as each brain AVM is a little different keeping your blood pressure down and avoid heavy lifting to keep pressure off of your AVM is key. I was under a lot of stress with my father in law having a brain aneuryism rupture and the stress of that situation raised my BP enough to rupture mine; so do the best you can to control your BP and get as much information as you can and then make the best choices for yourself depending on your risk tolerance.
There is a lot of good information on this site and some scary stories but getting indormation and different perspectives is the key in making the best decision for yourself.

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Hi there. I’m Lulu and I’m in the UK. I seem to be in a very similar position to your wife. I have a large AVM of the Cerebellum and it is very deep down in my brain. In all likelihood I was born with it as most AVMs are present at birth. But it showed itself up when I was 14 and it caused a secondary medical problem for which I’ve had operations. The AVM itself is unruptured though and hasn’t caused me any major problems in life (I’m 46 now). It is also untreated, largely because every neurosurgeon I have seen has warned that the risks of treatment far outweigh the risks of leaving it be. So I have chosen to take their advice and live with this. To me intervention feels reckless and I don’t want to destroy what I have. I know that 2% a year sounds scary. But I don’t think that is a cumulative risk and in real terms 2% is tiny. But I know I’m in the minority to feel that way. I’ve never quite managed to forget about my AVM but I have accepted the situation. I got married, had kids, pursued a career and don’t think my life is too bad at all. I try to keep a very positive attitude about all this and really believe that helps. Very best of luck and best wishes to you and your wife.

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thank you all for the replies. It has been insightful to read all the comments and points being made. We were given the option to do an angiogram but the doctor said given what he saw in the MRI most likely the recommendation would not change. My question is two fold: - what will we learn from having an angiogram - he mentioned there are risks in doing the angiogram but he would still want to do it, if it were himself in the position.

On a different note, saw a lot of the replies made emphasis on blood pressure. My wife loves dancing and doing aerobics, are those considered high risk now? We socially drink alcohol every once in a while, are there drinks safer than others? or is the overall recommendation to avoid alcohol even if it is one or two cups?.
Thank you all for the responses and insights

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Hi!

An angiogram is a detailed survey of the vessels. It is undoubtedly the go-to method for seeing an AVM in all its detail, so if you want to consider an intervention of some kind, doing the angiogram is the right thing. If her AVM is just way too close to major functions (e.g. stuff as basic as the stimulus to breathe) then it is much more sensible to avoid messing around near that sort of functionality and there is a bunch of grey space between breathing function and loss of lesser things where the balance moves to “we should consider that doing surgery would most likely improve things rather than make life worse”.

Open surgery isn’t the only option. I had an embolisation, which is to insert a very fine tube all the way up from my groin (the femoral artery) to my brain and inject some glue to bung up the AVM. Or, targeted radiotherapy can be used to zap the naughty vessels and encourage them to close up somehow. However, everything has its pros and cons, benefits and risks.

An angiogram is like the embolisation but rather than injecting glue, contrast material is injected and how it flows through the blood vessels can be seen on an X ray screen (or maybe fluoroscopy screen; I don’t know the difference). As such, your wife would need to have a tiny puncture in her groin to insert the catheter and there is a risk of the fine catheter damaging the vessels as it is navigated to the right spot, causing a haemorrhagic stroke. It is also possible for the catheter to go into a vessel that is too narrow and cut off blood supply, creating an ischaemic stroke.

I’ll add more later. Dinner is ready!!

Cheers

Richard

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Welcome to the family, Im sorry to hear the news about your wife and can offer some comments on your questions.

Firstly the percentage of a bleed increases every year so when they say 1-2% then the following year that increases to 2-4% etc etc… I was diagnosed in December 2010 at 30 and suffered a bleed a month later and had no syptoms whatsoever my whole life until that day… It was removed a few weeks later with surgery but at the moment Im due to get a further check up to confirm it hasnt returned.

Not everyone suffers from seizures or even a bleed as I have heard stories of ppl living their whole life and then passing away in their 80s and then discovered they had an AVM.

If your not 100% sure on things you need to ask the questions and do know you can always get a second opinion if that helps… also keep in mind you guys are not alone and there is light at the end of the tunnel… I wont lie it will be a challenging time for you both but keep the faith and be positive will get you a long way much easier… God bless!

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… but obviously the interventional radiologist watches in the screen as to where they are and knows whether it is safe to go into a vessel with the size of catheter being used. It’s just not a risk-free option.

In regard to dancing and aerobics, I don’t know where the sensible limit is – you’d be as well to ask someone else or your doctor as to how blood pressure goes up or down doing aerobic exercise but the gist of it would be that exercise is good for you, so continue doing some exercise but pushing it to far is not so good with a risk of rupture.

Regards alcohol, I don’t know, but I assume any alcohol pushes up the blood pressure a bit. I hardly drink, so giving up was not an issue for me. My AVM is a dural arteriovenous fistula, which was injecting blood into my right transverse sinus. This is a major vein, horizontally on the back of your head, inside the skull but basically on the surface of the brain – in the layer known as the dura mater. The issue I had was that the flow was so high pressure, not only was the blood taking a quick short cut back to my heart (and presumably running the risk of not keeping some other part of my brain properly pressured and flowing with oxygenated blood) but the flow was going into the TVS and flowing both ways – upstream and downstream, a situation known as “reflux” or retrograde flow. I feel as though it was the retrograde flow that made me feel poorly, partly because it was playing past my ears and perhaps thereby affecting my balance but it also got way worse when I lay down at night. Cutting out the chocolate and coffee (and the little bit of beer I did drink) took the pressure off and I felt noticeably better.

However, my AVM being a DAVF it is very much on the surface, the treatment of DAVFs seems to be different from other AVMs insofar as they have a different classification system as to when to treat them (the Cognard scale) and occur more frequently in later life, so are perhaps acquired rather than congenital, aboriginal. In this way, I believe my DAVF was developing relatively rapidly and the effect of the cutting out of coffee, chocolate made a difference for me of about a month. After that, I was starting to feel as poorly as my DAVF developed.

This is what I believe. I may not be perfectly factually correct.

I believe more internal brain AVMs are believed to be congenital, certainly in most cases and therefore whatever development has occurred in someone aged 40 has probably occurred over those 40 years – a slower development than mine. So don’t worry about the pace I’m saying about mine.

AVMs do develop over time and I assume this is why the risk increases over time. Equally, if an AVM is not wholly closed off, either by surgery or glueing or zapping, the remaining sneaky flow will continue to cause the risk to grow back up again.

My thoughts on all this are that when you first get a diagnosis of an AVM, the bottom drops out of your world. Much that you took for granted is suddenly dashed. However, it is greatly an adjustment to understanding life as it really is, not life as you innocently thought it was and everyone on the planet has something wrong with them. It’s just that most people don’t know what that thing is yet and some people die of old age before whatever they’ve got shows itself.

One of my work colleagues has a son who showed some unusual sign when in the womb. Whether that was possible Down’s Syndrome or something else, I don’t remember but in looking closer to rule out Down’s or whatever as a risk, the doctor discovered he had only one fully formed kidney. Andy and his wife were shocked. OMG! Our child has only got one kidney! But actually if that scan had never been done, their son would most likely gone through his whole life with just one kidney and never noticed.

Insofar as your wife is noticing migraines etc, clearly her AVM is having an effect, so now you know it is there, but it doesn’t mean that she is in imminent danger. There’s a risk and that risk will grow over time. The average stats say how that usually occurs but that doesn’t mean that’s exactly what is going to happen for your wife.

It’s a good thing to learn about it and be able to make decisions about it. It is as worrying as hell to start with but I hope that time will take the edge off it a bit. Everything in life has risks associated with it. It isn’t that we ignore those risks. Usually we understand them, accept them and take the steps we can to reduce them. Crossing the road is risky but by looking each way and listening, we do it every day without worrying about it too much.

I hope some of these random thoughts help.

Very best wishes to you both,

Richard

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Welcome to this forum. I found this group especially helpful when diagnosed with my own AVM a couple of years ago. The initial shock of discovering that your wife has this condition definitely takes the wind out of your sails and some time to absorb all of the information presented to you. As mentioned before by others, there are so many variables that makes each of our situations more unique and challenging. Getting the expertise from a larger hospital that deals with AVM’s on a more regular basis would be recommended. Living in Maine, seeking the expertise from specialists in Boston made sense to me as it is important to have faith in the drs handling your wife’s care. Angiograms, although rather expensive, are definitely worth their weight in gold as to the value of the information that other diagnostic tests cannot provide. I understand your desire to plan things out ahead of time and can certainly say that these conditions are much better addressed, if feasible, before they become a bigger issue. It’s definitely a personal decision, but it sounds like you & your wife are in a position to made an educated one with second opinions from the experts. I’ll look forward to hearing of your progress and the route that you choose that is best for your situation. You are absolutely in the right place here.

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I believe in the medical world the 2% does not begin until discovery despite the presence from birth.

Surgery is almost always looked at as the first and best option if it can be done as it carries the most definitive resolution outcome as well as instantaneous results. Glue does not always work though also instantaneous, and radiation of any form is an extended wait of up to years to resolution and usually carries a reduced chance of success.

DickD mentioned that your wife was having migraines but I do could not find that referenced in your post.
Cerebral angiograms can certainly pick up finer vessels involved in the AVM that are invisible on an MRI and give an accurate picture of the blood flow through the AVM. They do carry a higher risk of stroke when an AVM is involved because the veins are weakened from stress. It is this weakness in the veins that leads to ruptures.
As to blood pressure and alcohol, as stated above, it really would be best to have that run by your wife’s medical team as it would depend on the type, duration and intensity involved in her routine in her particular case.
I disagree with one statement made by DickD in regards to progression of a congenital AVM but am unsure if the same is the case for a DAVF. Congenital AVM’s may “grow” during the life of a person, this is most likely during childhood and teen years as the vein system is growing so can be a natural progression but is not always the case. They do not commonly progress outside of those growth periods unless a medical intervention has increased pressure or forced pressure through to another part of the veinous system. The veins however, can become weaker over time. It really depends on the AVM.
As you can see from the comments on here, each AVM is different depending on location, structure, medical intervention, cause and even lifestyle.
Plan your questions prior to appointments, with a further plan for additional questions depending on the responses you receive. As most have said, you have time to work this out. Don’t panic. Take in all the information offered and seek any more you need. From that you and your wife can make your decisions about how you would like to handle this. Once you have made that decision then move forward with it, whatever it is. You can also even plan your outlook. This will become your new normal and it will integrate into your life. Good luck to you both, God bless, let us know how you are going and know that there is a caring community out there that understands what you are dealing with.

@jquiceno I am so sorry to hear about your wife. The angiogram is the gold standard to see what is going on the brain with AVM -mine was far more complex then the MRA showed. I am like Dick and I have a DAVF which is a rare AVM and there are risks during angio and emblosims and I did have a minor stroke during mine. Alcohol is a blood thinner so I would definitely ask her doctor about drinking and also dancing and working etc. I know I was told I could not lift weights.
I am treated at Stanford by the head and founder of neuro radiology and personally these are rare and I would not want a young dr working on me. The best dr in the USA is Dr Michael Lawton who is now at Barrow in Arizona and he does remote consults you might want to contact them -I think they charge 250- He used to be in San Francisco .
I know my migraines got worse with my DAVF too. Mine was from birth but a rare type of stroke due to five blood clots called Cerebral venous sinus thrombosis and then my transverse sinus collapsed and then my body tried to fix it by growing the DAVF with 30 attachments - When I fly I have to wear compression socks and I get a terrible headache . Also severe weather changes give my terrible migraines. I get botox shots every 3 months as well. I am also getting Ketamine IV infusions every 3 months to help with my constant pain from my first stroke.
I would ask how many angiograms this dr has done on avm patients ? how many patients have had strokes? how many have died? I think there is a list of questions on here @DickD
Hugs Angela

It’s in the AVM 101 category:

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@DickD Thank you so much I knew you would have it!
hugs Angela