Is there any real, scientific compilation of data about annies?

General
21

Hi tami, it's a hard place for you to be in. I was told by the docs that smoking is a risk factor for rupture, just like other things that increase blood pressure e.g. heavy drinking, cocaine use etc. no the smoking didnt give him the aneurisms but the smoking and effect it has on blood pressure does affect the likelyhood of rupture so it's two separate things. I would be too afraid to smoke now, or have too much to drink etc so it's just not worth it for me. maybe next time he has a doc appt you could go along and ask about the smoking in front of him to try to get the message across but if your husband wants to stay in denial, he might not take it to heart either. It's tough because quitting smoking is so darn hard that your husband has probably just accepted that he will never do it and puts the risks to the back of his mind.

ps. when I had my rupture, I had just lit a cigarette and I started to feel like I had this weird sudden vertigo, I knew something was wrong but I think I even finished the damn cigarette! That was just the beginning and within a short time I had massive head pain, vomiting and was then unconscious with an ambulance on the way.

pss. was it you who was asking about vape pens? I honestly think it's the best way to go for hard core smokers because they really work. I vape and my blood pressure is really good now, I just dont think you can get that while he smokes

22

my surgeon said i had mine since birth, sure makes you wonder!

23

I had my first annie in the jugular vein in my neck - when I was under stress it bulged way out. I was in my early 30's when I had it removed (a cardio-vascular specialist just cut it out and sewed the jugular back together). He thought that it was congenital. My brain annie was diagnosed when I was 56 (unruptured) and I do believe that it developed later. One of the symptoms that I had that was driving me crazy for a year was pulsatile tinnitus (hearing your heartbeat in your ear), which no one seemed to know what was causing it. I haven't had the tinnitus since my coiling/stent.

24

Troy ~ I have been diagnosed with microvascular disease and endothelial dysfunction. I do have family history of aneurysms, but also have family history of diseases in the arteries. I have done extensive research on both aneurysms and my other issues. Endothelial dysfunction is caused from damage to the endothelium which is the inner lining of the arteries and vessels. In my research of this I found that aneurysms can also be caused from it. So there seems to be many reasons for aneurysms to form and I don't think they know of all of them. I have had a few discussions recently with people on rather or not you are born with aneurysms. I have found in research that some people are born with them and some are not.

My neurosurgeon said that I will be watched for the rest of my life to be sure that I am treated if another one forms. I have 2 for sure and a possible 3rd one forming in mirror image to one of the 2, apparently this is another common thing to happen when another one forms. I also found out that if they are hereditary that family may have them form in the same place. My youngest son has one forming in the same place as my 1st one that was clipped.

I hope with all the responses here that it helps you with your questions.

Take Care Troy!!

~ Carol

25

My surgeon had told me about a patient that he treated for one aneurysm that started using crystal meth and she formed several in a 6 month period. So he warned me to never ever use either crystal meth or cocaine. Not a problem for me, I have never used anything. I am not sure if crystal meth causes a constriction in the arteries which then causes blood pressure to rise or what, but I believe that cocaine can do the same thing as crystal meth.

26

I don't trust death certificates anymore. They put cause of death as Alzheimer's on my Mom's death certificate. They didn't do an autopsy and she did not have a diagnosis of that before death. She died of old age and she had congestive heart failure that was documented.

27

hey Troy! I found out I had 3 aneurysms in 1988, when one ruptured. Had no idea they were there. I was 25. Well, all the angiograms (no mri due to clips), were good until around 2002 #4 was found. two years later #5 was found. then 2010.. #6 found. which ruptured. #6 was coiled, in 2011 upon rupture. #4 & 5 were Pipelined in June 2013. was I born with them all. NO. Are there weaknesses in my brain arteries.... YES. #4,5,6 were NOT on any of my angiograms before the times I listed above. what causes this weakness? I don't know. None of my immediate family, all tested, have aneurysms.. I am the only Freak :) of the family. Thank God!!!!!

28

wow sharong!! I had almost quit smoking in 98 but I still did an after dinner smoke, then I started to get real dizzy and weak in the knees and could barely make it back into the house! im thinking this was sentinel bleeds?? Also had episode on vacation holiday could no longer walk had to sit, anyways I quit completely about 06 I think then had sah in 09, tc ~~

29

First of all, sorry if i already responded to this... i think i did specifically about clipping. BUT, if I did, AGAIN, THEY DON't KNOW FOR SURE.. I am living proof. again, at the age of a healthy runner, ran in high school, college, after college did 10Ks etc. Had "sinus" headaches for about a week. Saw a dr. specailist for what I thought was a sinus infection (I was 25 years old), VERY ALTHLETIC. 3 days later ...BAM! (I was ON MY WATERSKI in Lake Austin).. 1st aneurysm ruptures... they found 2 more. had no idea, no family history, no nothin, no symptoms, (until the week of the rupture, I felt nothing more than sinus headaches)... which isn't uncommon in Houston, Texas.. So, from 1988 through 2002... regular angiograms (NO MRI cuz of clips).. Regular! nothing new.. UNTIL, 2002! #4 is found. my next angiogram (watching #4 was about 2 years later) and #5 was found. They weren't there before. Because of where they were, no surgeries. Continued with regular angiograms.. then Jan 2010, after severe changes in my body.. excessive chronic migraines, water weight retention, irritability.. going from a six 6 my whole life to a size 12... bood work done.. no medical reason (believe me it wasn't from piggin out) NO EXPLANATION. yep that was depressing.. Felt like crap ALL the time with in a six - nine month period. Outta nowhere. Finally a sub PCP asks me who my neurologist is... well, my neruologist retired a while ago... married a neurosurgeon.. "you haven't been seeing one?" "No" this dr. made me an appoint with a neurologist within a few days... who subsequently made an appointment for an angiogram (with the same team that found #4 and #5) coincidently!!! Weird. So thats when, just days later that the biggest baddest of all my others... #6 on basilar was found. It was so weird it attached from the main artery to the 2 arteries that come from the main one. (hard to explain, but nasty). MY POINT. I was NOT Born with 6! Who knows how long the first 3 were there.. we'll never know... I do know that #4 came along... years later #5 came along... years later #6 came along.... I'm definately suseptible to Rupture... having 2 rupture.. But I believe I'll grow more! Cuz I have the history of growing them. None of my many neuro guys/gals have EVER told me why they think that...I Grow 'em!!!! If anyone has any info, I'd be grateful... i DO believe that i have a cerebrovasular disease... weakness in the arteries in my brain... that's all I can come up with since 1988.!!!!!!

30

my understanding (and to me this makes sense) is that youre not born with the aneurisms just the weak spots or inclination to develop them but the annies themselves develop at various rates and probably different times over years depending on different things like location, blood pressure, pressure at the particular site etc. to me it's like the old re-tread tyres that were once popular to buy, sometimes they would have unseen weak spots which would bulge out and even blow out after a time so they got a reputation as being dangerous but probably most of them never had a problem, it was just a crap shoot. I doubt if they can see the weak spots in scans unless they start to bulge and the artery becomes misshapen.

31

That would make sense (about cocaine). I remember during the 80's and 90's when snorting it was popular and several well-known public people died because of cocaine use. They said back then that it caused higher blood pressure and heart damage (it increased your heart rate).

32

Hi Troy

Please click on the link below and go to the New England Journal of Medicine, this is the most comprehensive study on Aneurysms headed up by Dr Tom Wiebers and is used bt most Neurosurgeons worldwide for risks etc. http://www.nejm.org/doi/full/10.1056/NEJM199812103392401

Click on the blue sub sections, below each section and it will expand the report, so that you get the full text of each section.

This is the biggest study ever done, so all you questions will be answered here in.

Best Regards

Martin

33

In answer to your question, "Is anyone keeping statistics on what happens to patients?" Not in any national survey or national statistics.

The problem is that the location of the aneurysm makes a difference, left or right brain makes a difference, as does the quality of the surgeon, the age and health of the survivor, etc.etc.... It's impossible to know what will happen to you based on these studies.

This is about 10-year follow-up of ruptured aneurysms and suggests there are more disabilities than survivors would like to admit: http://www.ncbi.nlm.nih.gov/pubmed/23208056

This is about unruptured aneurysms and indicates the quality of life after coiling vs. clipping.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3519507/

Both are complicated reading.

As to what causes aneurysms, there is no single answer. A summary of this is from a fact sheet from National Institutes of Health. I am surprised it doesn't include risks during the mother's pregnancy, since my surgeon felt my mother's health (heavy drinking) might have influenced it.

www.ninds.nih.gov ›

Cerebral aneurysms can be congenital, resulting from an inborn abnormality in an artery wall. Cerebral aneurysms are also more common in people with certain genetic diseases, such as connective tissue disorders and polycystic kidney disease, and certain circulatory disorders, such as arteriovenous malformations (snarled tangles of arteries and veins in the brain that disrupt blood flow).

Other causes include trauma or injury to the head, high blood pressure, infection, tumors, atherosclerosis (a blood vessel disease in which fats build up on the inside of artery walls) and other diseases of the vascular system, cigarette smoking, and drug abuse. Some investigators have speculated that oral contraceptives may increase the risk of developing aneurysms.

Aneurysms that result from an infection in the arterial wall are called mycotic aneurysms. Cancer-related aneurysms are often associated with tumors of the head and neck. Drug abuse, particularly the habitual use of cocaine, can inflame blood vessels and lead to the development of brain aneurysms.

Please let me know if you find better information about what happens over time, not just survival, but disability, dementia, deterioration....

34

I also had a bleed in my eye near my optic nerve. I was told it had nothing to do with my annie. I totally get the frustration about the actual science. Opinions are just that, I want scientific data. My neuro said my siblings needed to be checked because we have two grandparents that died from ruptures, and now me with an unruptured annie now repaired. However, He said my children did not need to be screened, because there is only one annie case in their family (me). That's so confusing to me, but then he really said its about the insurance criteria. Go figure. They also said that headaches are not related to annies, but almost every patient on this site has them, either before or after their procedure.

35

Interesting you mentioned about the connective tissue disorder association. I am a hypermobile adult ( easy to research and even test yourself) which they say is really a connective tissue disorder and I've had the eye bleed and an unruptured annie, now repaired. They say that is a genetic thing and will not go away.... so I would say I am prone to more in the future. They also say Annie's are genetic as well and in my case I'm number 4 in my family. Seems like some research dr. would jump on this well know killer.

36

Interesting...I am aware of questions on both death certs and autopsies... added by comparison to med records...either general/usual...or the procedures, etc...

Sorry I am so slow getting back...pre-occupied brain waves...barely rolling ...

Many of the aging do get varied declines in brain activity/memory (sometimes due to hearing decline/loss...can't hear it ---can't remember it)...And, some are so exceptional...One, @ 102...was saying "discover"...his wife finally told me he wanted me to get the March issue of Discover magazine...and, I was only 66...5 years after the

minimally invasive procedures...w/hearing loss, hemianopia (severe vision damage), the hit on the circadian, body temp and the continued GI issues...there is a lot to this story...

and, mine are not at all unique to other survivors...

37

Also troy, I would like to add no one ever asked me of occupational questions of what hazardous materials such as asbestos, chemicals, what age started smoking , was their any drug or alcohol abuse etc etc etc, you would think a major university teaching hospital would be interested??