Hi, i'm new here. I had surgery for a ruptured AVM last year and they also found a 2x1 mm annie. I was told that treatment is not necessary and that this could go away since the AVM is gone. They wanted to see me again this summer (one year post op). I saw a new study was published stating that size does not affect rupture risk and that most ruptured annies in the study were small. What am I supposed to do now? I was told that small aneurysms have a very low risk of rupturing. My neuro surgeon said that he wouldn't suggest a different course to his own wife or daughter. How can I reconcile this study with what my doctor says? I'm really scared now as I really was starting to feel safe until reading this.
Thank you and god bless. This study was conducted by Seppo Juvelo. It's easy to find in the "news" section of any search engine when you type in "brain aneurysm"
I haven't read the study - but research wording can be quite tricky. So most that ruptured were small.....but more aneurysms in general are considered small rather than large, so it makes sense that many small ones rupture. It's similar to breast cancer stats.....if you have a family history then you are more likely to get breast cancer, yet most people w breast cancer have absolutely no family history. I'd rest comfortably w what your dr says - how he'd treat his own family.
Yeah its easy to get a bit freaked when you read a study that says such a thing, however, keep in mind that during your angiogram, size is not the only thing that's being looked at with your particular aneurysm...other items that are noted with a radiologist are things like the actual structure of the annie, does it seem to have thin or thick walls, is it jagged in appearance or if the annie is located in an readily accessible area in your brain. if the annie is pressing upon other nerves which could effect other things in your life (like if it's lying up against an optic nerve or the optic chasm for instance) --all these things are being considered when it comes to the treatment ,or in your case , the non treatment, of your aneurysm. Family history also plays an important roll here. Rest easy (or at least easier?) Hope this helps!
One must be careful of studies and who they are studying...also, knowing all the variables involved can be difficult as a lay person...that being said...if you are being closely watched and you are doing the best to live a good life (no smoking, no binge drinking, keeping your Bp down, etc.,) you should be good...remember often a Doctor doesn't want to do surgery on a small aneurysm because the chances are slim of risk, but surgery can cause it to rupture...I hope you will be able to discuss with your Doctor and feel better about this study...Gotcha in my Thoughts ~ Colleen
the fear of an unruptured annie is a constant reminder of the little bubbble in the brain and you have already survived the ruptured AVM. I had an annie that was 7mm when they found it and I stopped going to the gym, playing squash and jogging home from work. No more smoking or drinking. It shrank down over the years to 3x4x4. I read every academic article so I could be informed and understand which was a double edged sword. The articles don't always match what the doctors say and even all the specialist doctors don't always agree. But they are amazing at what they do. After 5 1/2 years they used a pipeline stent and my eyesight is saved, a little bit dodgy still, but better.
Living with an unruptured annie is like if you had a bomb in the office of your house. It is packed right in there in the middle of a whole lot of files and very important things. The timer is counting down but you can't see when it is going to go off. Maybe tomorrow, maybe never. No-one else can see that anything is wrong with the house but you know it is ticking away. Whether big size or small size both can do considerable damage. Sometimes these bomb squads - crack disposal teams that they are - just don't quite understand what it feels like to live with that.
Perhaps print out the study and show some highlighed parts to the doc? Like Sue said 'trust in the neuro surgon' and take it easy.
Thank you all so much. I'm trying to recover from reading that study :) It just felt like the opposite of everything I thought I knew about aneurysms. @Vee: you are right about a ticking time bomb. It's so hard to get others to understand just how that feels. Many serious conditions offer you time to get your bearings.... but aneurysms can be very sudden and devastating :/
This study revealed that around 30% of aneurysms they were monitoring ruptured. It sounds like most of those were under 7mm. While 70% didn't rupture (apparently), that's certainly not the overwhelming majority. I was coached (almost shamed) by my surgeon into thinking that my chances were extremely low of suffering any consequences. Now I'm trying to figure out what that is based on. This study proves that size doesn't really matter. Thank you and God Bless.
I totally get the shaming. Experienced the same thing. I did try to understand it from the neurosurgeon perspective. All I could come up with was perhaps she/ he had just walked in from seeing a patient with a golfball sized tumor then looked at my scan with a little pea sized annie? I presented looking completely healthy. They can operate on the tumor but the annie was unoperable so all they can say is: 'don't worry about it, you will be fine, nothings going to happen'.
Thanks Janet and Eva for saying you like the bomb story. It is so hard to explain how it feels, except here. I thought about the analogy over the years with the squad sometimes cutting a hole through the wall to come in and clip the wires to the bomb. Sometimes they get in specialists who go in through the electrical conduits via the stumps of the house. Oh. Sometimes things like the shutters on the windows can be effected if wiring is pressed against then you can't see out of the house properly. But I don't know, but from what I have read from the lovely people here in this group putting all those office files back together in the right place if it does go boom is quite a task.
Maybe also your surgeons hands are tied and he is not allowed to do anything at that size? Hospital policy? In Aus I think it is <7mm unless highly symptomatic and I read somewhere, France as well (but that may well be out of date information). Eva perhaps the best things from the study was risk factors - no smoking and lower blood pressure then you are in the safer area. Best wishes.
Thanks Vee. I'm not sure what to do anymore. I already went to see my surgeon in March for an "I'm freaking out here" visit... where he more or less shamed me for worrying. I started crying and said that I wanted this to be over. He said "it is over". Not a good thing to say after seeing this study. It feels far from over.
Should I make another appointment or wait for my slated July angiogram??? I want to trust his confidence but now I'm wondering if his confidence was based on older/possibly inaccurate studies. This feels so upsetting.
Just for general feedback: would you consider that 70% not rupturing is reassuring or not?
I read the study. It makes a very big argument for smokers vs nonsmokers as a major factor for rupture. So if you don’t smoke it looks like you can considerably reduce rupture risk. As for the size, how small is small. The article says less than 7 mm, but it doesn’t say what the lower limit is. My guess is there is a lower limit where the majority of aneurysms simply don’t rupture. You being at 2x1mm would certainly fit in that category as they can’t get any smaller and still exist. Please go get a ruler and see just how small 1 mm is. When you are dealing with aneurysms that small they may not be able to be treated, or it may be more risky to treat than to leave alone.
I have had a ruptured aneurysm that was repaired. I now have a 3x4mm residual aneurysm. Due to its location and physiology, the doctors won’t touch it saying it is “too dangerous”. So here is how I look at it. I have almost completely recovered and am back to my life (other non-related condition excluded). Do I want to risk that by finding a doctor to do surgery that may leave me blind or paralyzed? Absolutely not! So I go on with my life and get it checked once in a while.
If you already have had a second opinion and they both agree, I would try and relax and just get things monitored. You don’t want to do anything risky when there is no need to. Feel fortunate you know it’s there and its being watched.
July will be here before you know it :o) Tony's relax idea is great. There are so many studies about annies and they just about all say to watch the little ones.
Neurosurgeons are great at surgery - it takes a type of personality - high achieving, they can go into brains! But not always good at people skills. It is o.k. to be worried it would be weird if you weren't. The best thing I did in the years that I lived with my aneurysm was talk to a psych/ insight doc about my worries.Please take this the right way sometimes it sounds funny when people mention psychologists but this is how I went and it helped me immensely. Perhaps the surgeon may not be the best person to help? Wishing you all the best, Vee
I can completely see why you're worried. My annie was discovered by MRI in the course of ruling out something else unrelated. Then I had an angiogram that revealed a couple more annies and some other oddities. My surgeon made it clear that there is not a good correlation between size and risk of rupture-- that it could look stable and still bleed at some point. He said if it grew a lot over a given period of time, that might make him more likely to encourage me to have it fixed.
But as others have said, it seems the decision about what to do depends on many other factors, too: your age, general health, blood pressure, the architecture of the annie, where it's located...heck, even your insurance coverage and what else is going on in your life at the time.
This was tough for me because I always want to find the "right" answer, and it's not so clear. Some people can tolerate more risk or feel luckier than others. Some are scared to death of hospitals. You have to reach a conclusion that both you and your doctor are reasonably comfortable with. It is often a good idea to get a second opinion, preferably from a doctor who isn't always in agreement with yours. I had one from a doctor who generally takes a different approach from my doctor (coiling & stents), and he agreed 100% with the proposed course of action for me (clipping). It made me feel better about going ahead with it. And my surgery went fine, but then I had complications once I got home....nothing is guaranteed simple.
My primary care doctor is sending me to a geneticist, which is also something you might consider if you have other unusual findings on your testing, birth defects, a strong family history, etc. I am hoping it can guide me in how often and what to screen for, and what I should tell my kids to be wary of.
Good luck with your doctor appointment and making these decisions. What stress!
Thanks.... I'm definitely getting different answers from this site which is scary. I'm also slowly unraveling the painful truth that most ruptured annies are quite small. I don't know what to do. My AVM surgery went unbelievably well but the leftover aneurysm has haunted me. I am supposed to get a followup angiogram in July or August. My surgeon made me feel so confident of low risk that I was considering moving my angio a little later. I hate doctors and hospitals so much. I fear the worst in every situation and there's really no good outcome for this aneurysm. Even if it's stable, I'm realizing that this is not the low risk situation that I was made to believe by my doctor.