AVM Survivors Network

How much time have I got left?

I know that’s a hard question to ask and even harder to answer, but let’s be real for a sec. My wife and I were getting life insurance and she is approved, I am not. I figured as much, but I want to know basically two things.

First, from doctors studies, after discovery of presence of an AVM, on average how much time does the person have left?

Secondly, with the abbreviated life span, what did you do to provide for your loved ones if you could not get covered by any life insurance companies?

Just putting that out there because as much as possible, I want to leave a surplus and not a debt to my family.

And I should state, I don’t have gall bladder, appendix, part of small intestine, and I do have a programmable shunt in my head.

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Hey Paul,
Unfortunately, I’ve had a bit of experience with these insurers and none of it has been good. I too have a shunt and when I disclosed this, the answer was an automatic ‘No’ to cover. I asked “What if the cause of death has nothing to do with the shunt?” and was told “We have a team of lawyers and we will fight it”. In their view " you could trip over on an uneven foot path and we could argue you had a dizzy spell, then fell. And it would be your word against our lawyer’s word… …everything is controlled by the brain, you have a brain condition. We could blame anything and everything on a previous condition and therefore void your policy".
I had an insurance policy as part of my superannuation and when I went to make a claim they were rude, nasty and vindictive. They put up EVERY obstacle they could, even had an investigator sitting in a car outside my home, watching me and talking to my neighbours. I had the policy prior to any firm diagnosis, so they couldn’t say it was a known pre existing condition. I ended up making a formal complaint to the financial services ombudsman in regard to their conduct, then got myself a lawyer to deal with the $#@%&#@. It cost me $$$$$ to do so, but saved what little sanity I had left.

Be very careful, they will be more than willing to take your money, but less than willing should you need to make a claim.
Well, that’s my 1st hand experience with these mongrel/insurance companies.

Merl from the Moderator Support Team



To try to answer a couple of your other questions…

How long have I got left? I think it is entirely variable. It’ll depend entirely on where it is, how big it is, if it has been treated or removed, how impactful the treatment was, perhaps. So to (not) answer the question, I think it completely depends. My own view is that sometimes we can worry about this more than it is worth. We’ve got a rare condition, so focus on that. Then get run over by a bus or die through some so much more common thing. There is a radio advert for a cancer charity in the UK at the moment, citing that 50% of the people we know will get a cancer diagnosis at some point. Half of the people we know. So, I’m just putting it out of my mind. There are a million other things out to get me, too. This life thing is deadly dangerous! :wink:

In terms of insurance, I have a young relative with a genetic condition. If they were to get to 40, it would be a complete miracle. Their parents realised very early on that they would struggle ever to get insurance, so rather wisely started putting aside a pot for when more significant hospital time would be required. I’ve no idea whether they ever got to a decent sum but that was their strategy for putting something in place, given the b*stard insurance companies’ approach to zero risk.

Are you saving for a pension? I don’t know how tax and pension contributions work in the US but in the UK, it is a great idea to fund into a proper pension scheme with the right options for a future salary, spouse / dependent pension and/or ability to take a lump sum out of the pension at some point. In the UK, pension contributions are before income tax, so a really great way to get value out of your income for a later date. Obviously, it’s a form of insurance, so starting a new scheme might give you some or all of the obstacles you’re already facing but it may depend on the scheme; and if you’ve been contributing into a scheme since a young man, you may be able to up your contributions to that without triggering new conditions.

Hope any of this helps,


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Thanks for the helpful tips from all. And I should say, insurance, at least so far as my wife and I have seen, is in it to keep their company in the black and that’s about it.:yum: Also, I know the statement “how much time have I got left” is also wide open. But it was generally to start a conversation of final arrangements. I thought I was way too young to be thinking this at 18, but after the first bleed the summer of my18th year, death is always in the back of my mind.

My main concern is simply to provide a somewhat stable transition for my family when I’m gone. With my wife working, my children and I on Social Security, and a precautionary life insurance policy in place for burial, I suppose I’ve done the best I can.

Now it’s time to get the word out regarding this condition so that those that come after won’t have such a difficult time getting answers to questions that should have been asked many years prior. Thanks guys and gals.


Put the money you would have spent on insurance in CD’s. They are insured. Credit Unions seem to have the best rates. Good luck. My bleed happened at 16. As time went by I stopped worrying about how much time I have left. I see a neurologist twice a year. I worked as long as I could and finally went on disability. Depression has always been an issue for me. Thanks to my PC that is better now. I am 62 now and never think about the time I have left. God bless you and stay strong.


My AVM ruptured in 1992 it’s been 27 years I do have life insurance but I did have it before I was diagnosed. My sister has a shunt in her brain and she has a $25,000 life insurance policy there are many companies out there and they do offer life insurance that don’t require a medical exam to give you life insurance.

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Hi Paul,

I’ve had the mis/good fortune of having an AVM, being a former insurance agent and being turned down for health insurance. I’m 58, never married and no children. So no need for much life insurance. You can read my AVM odyssey in my profile if you’re bored.

I applied for health insurance not too long after I was released from my neuro surgeon which was around 1994. Initially I was turned down a health policy. I shared this with my neuro surgeon. He actually got pissed off and gladly drafted a letter stating that the general public is at higher risk than I; I had the AVM, now I don’t. I also threatened legal action as there was no medical nor actuarial reasons for denial of coverage. The insurance company issued a policy.

Your life span is not necessarily abbreviated so get that out of your mind. But as a former insurance agent and now a real estate agent for 21 years I’ll just add that as a provider for your family, AVM notwithstanding, it’s always prudent to meet with your accountant and/or a financial planner. Or at the very least just work diligently to pay down your mortgage and any other debt (remember the old expression, "how do you eat an elephant? One bite at a time). Don’t incur new debt. AND LIVE BELOW YOUR MEANS. It can be done. Nobody “needs” a new car every two years or five giant flat screens, and access to every conceivable media subscription in their home. Commitment to making what truly matters to you and your family your priorities is key.

Hope this helps.

We’re here to help. Reach out…


Hiya. Yes I’m afraid that I agree with the other responses here. Try not to focus on how much time you have left but on making the most of that time for you and your family. I realise it is prudent to consider what happens in the event that your death comes first. And I worry about this a lot too since I have an AVM and a Shunt like some of the other respondents. Insurance companies are the pits. In my experience however much you try to tell them that their assumptions aren’t quite right and that each brain condition has different risk levels associated with it they just don’t get it at all. My AVM is unruptured and I actually suffer very little day to day. But it makes no difference. Fortunately I am a great believer in positive thinking though and am determined to live for as long as I can and make the most of it. Best of luck to you. Lulu x

Just had a further thought Randombeggar. Could you ask insurance companies to quote for a life insurance policy that excluded your AVM? Not ideal I know. But at least you might be covered if you happen to die from a totally unrelated condition.

That’s a good thought Lulu but so far two of the companies I’ve worked with said I’d be approved, but when the application was sent off to underwriting, it hit a hitch. Apparently there is info in the underwriter handbook (if that’s a thing) that excludes AVM from coverage. Right now my family is covered but I was only approved for accidentally death (like stepping off the roof or something. But hey, it’s something. And at least was
wife and kids are covered.

I knew I had a large AVM in my brain in the 1980’s. I began getting major headaches &* gran mol seizures. Year by year, I got more & more headaches & seizures. In 1990, at 29 yrs old, I could not take this problem anymore. I looked & looked for a neurosurgeon & found Dr. Robert Spetzler, Barrowlogical Neuro Institute/Phoenix, Arizona. I am not sure if he is still practicing…but look into it! I would be dead probably if I did not do something about my gigantic AVM!! I now have my FAB 2nd Life!!!