Is anyone keeping statistics on what happens to patients. Each Dr. seems to have their own story. As I read through comments I see all sorts of contradictory information.
Well, it posted before I was done. I just read one Dr. saying you are born with all the annies you will have. That seems to be a variation on the idea that they are genetic, but it means something different. We all worry about getting another one and I thought the follow up testing was to see if that has happened. And then someone else's Dr. told him that his annies were a result of some kidney issue. And the answer to how many follow ups, what type and how often are all over the place. I would say that my annie was forecast by a bleed in my eye called a BRVO. A BRVO indicates a high risk of stroke and heart attack. So that leaves me wondering, will I get an annie in or around my heart and what should I do to try to find out before it ruptures. Etc. etc.
Troy, I have often thought along the same lines on the AVM community, that insufficient studies had led to a hodgepodge of incomplete and contradictory information. Fortunately, we have the Brain Aneurysm Foundation taking the lead here -- in featured discussions, there is a request for members to join in a patient-outcomes study.
Thanks, dancermom. I checked it out. It is for unruptured aneurysms so I can't volunteer, but I will be happy to learn the outcomes. I got a BAF newsletter and was excited about the studies being financed. Now I have to look around the site and see how to donate.
I've wondered the same thing. When I first read about aneurysms I read that they are genetic, or caused by high blood pressure, or cocaine use. Well I knew I didn't do drugs and nobody in my family had them (to my knowledge) so I blamed high blood pressure. But even among the series of doctors some would shrug and say 'really, we just don't know'. I guess that was the most honest answer I heard.
Good Question Troy...I hope you get more responses...my personal opinion is that the Brain is the biggest mystery in the medical field...wishing you a good Friday ~ Colleen
Troy,
VERY interesting question...and I'd wager to say that it is still a complete puzzle in the medical community...Sure, there is no doubt certain things will pre-dispose anyone to an aneurysm (smoking, drugs, high blood pressure,, stress, too much garlic, hanging upside down like a bat for too long and too often )-lol-but never have I heard a 'no question about it' type of hands down reason that would be satisfactory to explain why I've had several aneurysms , why they were discovered 8 years apart from one another, why no one else in my family has had this annoying problem with aneurysms and so on and so on...
Polycystic kidney disease is another one of those diseases that has been thrown into the aneurysm arena, and they claim lots of folks with PKD are prone to having brain aneurysms..Another thing they've discovered recently is that , when an actual aneurysm is dissected, it appears that the annie sac is filled with blood and collegen (indicating that an aneurysm is formed due to something to do with the collegen within our connective tissues...making a Connective tissue Disorder a culprit for aneurysm formation..Maybe..!)
In other words, Voodoo and mysterious inuendo's seem pretty prevalent in the world of annies..and they simply don't seem to know the exact reasoning behind them...Fixing them is what seems to be the main focus in the medical world, not so much research into why they are there to begin with..there seems to be no concensus on when we should have follow-up MRA's or angiograms, One doctor will say you'll never get another aneurysm then you come across another doctor who says just the opposite! not to mention how health insurance (or lack thereof) comes into play..
Just my observations on a very gray area...!
Peace, Janet
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When I was scanned for my annie I was told by the first doctor that you’re born with them and then I went to see a very famous specialist for aneurysms we have here in belgium, and he assured me that even though it can be hereditary (hence the family history screening), you are not born with it. It appears in the course of your lifetime and it grows. Or not. and it ruptures. Or not. This is why we are supposed to get scanned regularly once they found one because we can develop new ones. Polycystic kidney disease and high blood pressure are risk factors of course
I find it frustrating too that getting solid answers about why is so hard. My take away from what I've been told is you may be born with a predisposition or weak spots but the annies develop over many years and ruptures are more likely with smoking, cocaine, high bp etc. I've also read they are more common in women so there must be more to it from that angle as well?
I don't think there is a definite answer yet. Before I had my clipping done at Johns Hopkins I was interviewed by some research doctors from different countries (in regards to brain aneurysms). The only thing they could definitely say is that, if you have one and you're a smoker or drug user that will definitely increase your chances of having it rupture.
They also said...and my neurosurgeon agreed is that there has never been a case where someone has developed an aneurysm after age 50, which was great news to me since I'm over 50!
That is good news valerie, I wonder why they dont form after 50? I'm 45 now so hopefully I wont get any new ones
I don't really know why and I don't think the docs know either. My neurosurgeon assured me that I was cured after my clipping and that there has never been an incident of someone over 50 developing a new one and he's the top neurosurgeon at Johns Hopkins. Guess there's something to be said for getting older...lol
Fortunately or not it's a relatively rare disease and I guess there aren't as many funds for research as for other more common diseases, but I agree there must be better answers and I really hope that research will bring good news in the coming years. Maybe even a way to prevent them one day, why not?
Valerie and Sharong...
You may want to research
www.ninds.nih.gov/disorders/cerebral_aneurysm/detail_cerebral_aneurysm
They have "What causes a cerebral aneurysm"... ..can be congenital...inborn abnormality...
Aside from this article, I have a vague memory of an article covering the weak area of an artery wall where the aneurysm forms...usually close to the branching or bifurcation of arteries.
Now...I was 61 when I had the aneurysm leaks/rupture...I was 56 when my headaches began following two MVAs four months apart...that h/a was definitely in the area of the aneurysm...
A friend's neighbor, past 80, lost his wife and her death cert was noted "brain aneurysm" ...he told me she had never been diagnosed or treated for one...
The mother of another friend had a hemorrhagic stroke...not w/aneurysm...it was an artery wall weakness...she was also in her mid-80's...
Perhaps, had I not been involved in two MVAs, mine would have developed slower into my 80's...or maybe I'd have been gone sooner from a flight...or another fright...In my first ten years of recovery, I lost more family/friends from cancers, PKD, Alzheimer's...far more than 10...several younger than me...
Does this help open more doors to statistics...and the research of causes?
Hi Valerie,
The unfortunate thing of what your Neurosurgeon told you is only true to a point--if he clipped your annie, then no doubt that particular annie will never give you any more problems....but that doesn't preclude you from getting an aneurysm in another part of the brain on another artery later on down the road.....there are plenty here who've found out well after age 50 that, guess what, another aneurysm had formed even though they thought they were completely 'annie-free' (my first Neurosurgeon told me that the odds were not in my favor regarding having another aneurysm--yet 8 years later I most certainly did have another) -- So in my view point....I don't really think the docs can say for certain what will or will not occur with any one individual ...at least not from what i've seen.
Pat, what is an MVA? I looked it up and couldn't quite figure out. Is it related to heart arrhythmia?
I can't quite believe the statement about no one will develop an aneurysm after age 50. I see no reason that they could have supporting evidence since annies aren't necessarily discovered before rupture. Mine ruptured at 63. Who is to say when it started to develop.
Can I add blowing your nose to risk factors? (joke) I did have blood pressure in the zone that most doctors would treat, but not super high. No one else in my family has been found to have an annie, meaning none have ruptured. No one has been scanned. Also don't smoke and I don't use drugs. I hadn't heard a cocaine connection before.
My apology...MVA (motor vehicle accident)...when searching any words/abbreviations...
include: medical definition...I learned MVA off my auto insurance records...
RE: arrhythmia...I am aware of a number of us, post procedure (either type), having arrhythmia... sometimes just in the way we turn...particularly lying down...
I am intrigued by your interest in statistics...because I am, too...
Right down to the annual stats...on ruptures...
I got the feeling that they were talking from people who already were known to have annies and were being monitored with scans that they never saw any of them develop new annies after 50. I think It's possible that all annies form earlier in life but how rapidly they grow probably depends on a number of factors and for some people the growth may be so slow that they never cause an issue. It seems from reading the forums that most people are not young when the annies are found from ruptures so it may take decades for them to become a problem but are still formed in us at a much younger age. I've had bp issues and I smoked so that may be the reason I had a rupture at 44 yrs old instead of much later. If I never smoked and had good bp, I may never have had a rupture but probably would have had annies still (just from being told that these things dont cause them, only increase the risk of rupture)
just want to comment that my hubbie who suffered his ruptured brain annnie Nov 8th 2013 and was coiled and even though he had several complications is doing very well. the issue is that he had smoked since age 14, he was 53 when he had the rupture he was told by the dr's that there is still another small one, but they will watch it. he has started smoking again excusing the rupture as " I had it all my life, like the docs said, so smoking isn't the problem" He believes that the docs said to him it was just a "fluke" that it ruptured and won't blame the smoking on it at all, I know for a fact that smoking is the main cause of the rupture, but if I bring it up he just gets mad saying " I'm always bitching about him smoking" and that it's my issue, but I say the next time the first one has complications or the smaller one bursts that it's all about the smoking am I wrong?