Missing arteries in the brain...no information anywhere

[Razorecko]

Hello,

I am a new member. I've been looking for information the last couple years and I can't find anything about my genetic brain arterial malformation outside that my neurologist said its very rare. I've had severe headaches that went away as I got into the teenage years. Starting in my mid 30's they came back with a vengeance. After having a MRA done it was found that i have no ACA/PCA arteries. ( Anterior or Posterior communicating arteries) So I only have one arterial branch feeding each hemisphere of the brain with no connections to the other side. I've been trying to find other people with similar conditions and their risks and experiences but I haven't even been able to find one case on the internet. Not even in brain artery malformation studies. Does anyone have or know of any with a similar condition ?

[agate]

Just wanted to welcome you, Razorecko, even though I don't have an adequate reply to your question.

You've probably already explored the Arteriovenous Malformation forum here at BrainTalk.

I hope that someone will come along with some helpful information for you. It sounds as if you're getting good medical attention, but it can be useful to find others with a similar condition.

[Razorecko]

Thank you agate, yes - i've been on the search for a couple years - I hope to find something soon, especially as I get older and the symptoms get worse.

[agate]

It might help if we could get our archived material back so you could look back among more postings. I keep hoping that that feature will be restored but so far the administrators have been too busy, I guess. However, we did have access to archived posts for many years--it was a standard feature, and so I'm not giving up hope.

[Razorecko]

That would be very useful. The access to information on the internet has gone down drastically since I've logged onto aol using a 56k modem line. Everything is turning into a pay per use service and information is highly controlled in order to maximize profits.

[agate]

Have you tried setting up a Google alert or maybe several of them? You'd get the alerts in your e-mail inbox.

[Razorecko]

I have and nothing shows up. I'm honestly not even sure if I'm a one of case at this point - the way my neurologist stated that I should be in the e.r. for any headache lasting over 30 minutes makes it seem that if there were/are cases they might not have a normal lifespan.

[agate]

That unfortunately may be true. In fact, speaking strictly as someone without any medical training, it seems to me that just about any disorder involving the brain can shorten one's life. I don't mean to scare you as by no means all of those brain disorders will do that, but you should definitely exercise caution and try to stay informed.

I've found it useful (with MS) to keep up with the mainstream medical resources--The Lancet, Nature, the New England Journal of Medicine, JAMA, and the PubMed listings, for instance. You do need to know the exact medical names of the disorder(s) you think you have, and many have more than one name.

Multiple sclerosis, for instance, is often called "disseminated sclerosis" or just "a demyelinating disease."

[Razorecko]

Thank you for the information, i'm not scared but more curious and just trying to assess risk. It seems like at some point there is only so much I can do but just be grateful for what I have. Medical care is not what it used to be so navigating healthcare and acquiring information is not as simple as it used to be. We make do with our hurdles, adjust, and move forward.

[agate]

Thank you for the information, i'm not scared but more curious and just trying to assess risk. It seems like at some point there is only so much I can do but just be grateful for what I have. Medical care is not what it used to be so navigating healthcare and acquiring information is not as simple as it used to be. We make do with our hurdles, adjust, and move forward.

Being curious and trying to assess risk--that seems perfectly natural to me. Each one of us is the boss of our own body, and we're capable of saying No to anything we don't want. Many people seem to be in awe of medical providers and don't question them enough, and that's understandable too as the medical providers obviously have more training and knowledge than their patients, as a rule, and of course we respect their opinions. But they're only human and they have their limitations. And we're the ones who have the best knowledge of our history and our own reactions.

[Razorecko]

agree wholeheartedly !