Hi everyone and best wishes for continued recovery!
I was just wondering if anyone also has or had aneurysms? I was diagnosed with a 2mm aneurysm and an AVM. My surgeon only treated the AVM and is going to monitor the aneurysm. Is anyone else in this situation? Does anyone know if there's a difference between an independent aneurysm and one that was caused by an AVM? Most sites say that small aneurysms are low risk but I don't know what to believe. I'm probably not alone when I say that statistics mean very little after getting a rare condition like AVM. I've also been told that AVM-associated aneurysms can spontaneously resolve with good treatment of the AVM. As these lesions are so rare, I simply have no resources. Thank you and bless you.
My wife had a lot of scans dealing with her AVM. One scan after an embolization, an aneurysm showed up. The Drs couldn't say if it was there all along and just wasn't seen, or if the increased pressure with part of the AVM closed off created the aneurysm or made.
Yes I had 3 aneurysms …2 surgeries were done and one small aneurysm remains to be monitored by the doctors within 6 months. They gave me no further info.
I also have aneurysms - 2 - with an AVM. Like you, my doctors aren't worrying about the aneurysms, just treating the AVM. In fact, the aneurysms have been such a non issue that they haven't even been mentioned to me anywhere but my MRI report. Since "treatment" for aneurysms is so invasive - clipping surgically or coiling - doctors usually don't do anything until the aneurysm begins to cause trouble.
Honestly, with AVMs, we have enough to worry about! I know it's easy to get worried thinking about all the other stuff going on, but hopefully you trust your doc enough to know he/she wouldn't ignore something if it needed attention.
Our experience was different; the drs said it would be somewhat silly to fix the AVM and not fix the aneurysm. As far as I know, the aneurysm, being in a different area than the AVM, wasn't causing any issues/symptoms.
We understood that the result of an AVM bleed and a ruptured aneurysm could be equally catastrophic. Each would require immediate surgery most likely to stop the bleeding.
Size, location, doctors, and other factors might indicate different opinions.
My AVM was actually found after I had what they call a "flow related aneurysm" ruptured suddenly one day last year.
It took them a week to figure out that it wasn't my AVM that had bled but an aneurysm that had ruptured, and then clotted off and "refilled". It wasn't until after the second angio a week post rupture that they found it.
My aneurysm was fixed by my AVM still remains as of now.
It isn't uncommon for people with AVMs to also have aneurysms as the flow to/from the AVM can cause AVMs to form on feeding arteries.
That being said, if the aneurysm is small and there are no symptoms related to it usually the doctors will just opt for monitoring it to ensure that it does not get larger. I am sure that if there was anything to be concerned about regarding your aneurysm your doc would suggest treatment.
Yes, but mine was in my neck. It was found by accident when I went in for an embolization. I had plenty of angios and embos before, but it was never noticed. It wasn't huge, but it wasn't tiny either, and with my history, my surgeon went ahead and took care of it. It does worry me sometimes that another will be found, as I have AVM and VM throughout my head and neck and sometimes it seems they just pop up on their own accord. While there are other causes for aneurysms, if you have an AVM and an aneurysm, then I would bet that would be the cause, or at least the main cause. Keep an eye on your BP and be careful working out and also try to avoid things that thin the blood, NSAIDS and excessive alcohol...not just for the aneurysm but for the AVM as well. I have no idea if there is actually any difference between an aneurysm caused by an AVM and an aneurysm caused by other issues, if that is what you meant when you asked if there is a difference between an independent aneurysm and one caused by AVM. When mine was found, I was told when I woke up from surgery and he didn't go into as much detail as I would have liked him to, with the exceptions of size, location, etc... Although I was pretty medicated, so maybe I missed something. Had I been able to speak at the time, I would have asked him a lot of questions, but talking and swallowing were temporarily not possible. If you are really worried that your doctor is treating it too conservatively then please do get a second opinion. Do as much research as you can, bug the crap out of your doctors with questions (I know they are busy, but this is YOUR life and you have every right to ask whatever you wish!) and don't be afraid to listen to your gut and be in tune with your body as much as possible. I hope and pray that you don't need medical intervention for it, but if it turns out that you do, once it is over with you won't have to worry as much :) I hope this was easily read...it's 2am and I am nearly falling asleep on my keyboard. Blessings to you!
Another thing I forgot to add from my understanding: AVMs in addition to being vessels that flow from high pressure to low pressure without capillaries, is that the vessels are weaker. The vessel walls are not as tough or formed so that they can contain the pressure. That being the case, it would be easier for aneurysms to form in those walls, expand, and potentially rupture.
If that's true, then it seems to me that people with AVMs might be more prone to having aneurysms.
At least that makes sense to me....................
I had an Avm rupture that lead to bleeding in my head. The situation was monitored, a 4 hour surgery took 6 hours, one embolization lead to more surgeries and treatments to come, and the bleeding hasn't stopped. I once worked in construction, now a survivor. You are more than just a statistic! One morning I was waking up from a calm sleep. As I tried to get up and out the bed, my world turned dark. I can remember waking to the ambulance personal and hospital treatments after that. Hang in there and try not to stress. Staying healthy and calm is very important in getting through this situation. Good treatment can work if you allow your body to aid the good treatment. God bless.
Very true Anthony about the stress part but I can’t seem to control that part of my life everything seems to go more wrong since this condition happened. I am trying to work at it by writing in my journal and praying.
This condition causes worries to heighten. I get that. I had that problem myself. I was very easy to become irritated, made some bad decisions, and didn't know how to justify my surroundings. Live, learn, and let go. Somethings are more of a burden. Your health is most important. No one else will know how you truly feel either. It's not your problem, but theirs to deal with. Try to have patience, stay calm, and be persistent in your faith. Think positive. Your future will be much brighter. This is a bridge that you must cross having confidence in yourself.
Three days before AVM surgery, after an fMRI and angiogram, they found an aneurysm just behind my right eye. I gave approval for both, removal of AVM and clipping of aneurysm, in the same op, as there was a possibility the AVM op could result in the aneurysm bleeding. It turned out they couldn't attend to the aneurysm, so after a week in ICU, my swelling had come down enough from the AVM resection, for the clipping to go ahead. It's done, no sign of either after 3-odd years - I'm one of the lucky survivors. Each situation is different, and I would always seek a number of professional opinions, before making any choices. I chose to have the aneurysm clipped, rather than chance it - since my op, I have lost two very dear friends to aneurysm bleeds - young fathers in their early 40s who didn't even know they had aneaurysms. Take care, and stay strong.
Hello Lindsay, Hope that you can tell me real experience and give me moral support considering my situation.
I am living in Edmonton, AB and working for Alberta Health Services. I have
two children ,4 years girls and 2 years boy and I had brain Aneurysms on
March 24,2013 and it was fixed by putting coil in my head . Moreover I have
AVM from my birth and my AVM has not been treated yet. Doctor advice me to
go for Radiation to stop aneurysm (It might happen again) but I am afraid of its side effect as I told by someone and doctor. Is that true if I take radiation I will be paralyzed (40% chance) or hair loose (35%)or some unknown side effect that doctor do not know.
I am sending this posting to you and all of my well wisher to know what are the risks and side effect if I go for Radiation . I do not want to live as a paralyzed person rather I would like to die.
My children are little even they do not know what is going on. Please let me know your experience and also let me know the side effect with the percentage who (patients) went through radiation .
Hey Amin Islam, It is very unfortunate that you'd have your aneurysm and an Avm was discovered during treatment. March 22 is my Birthday. You had a coil on March 24. Coincidental or no I just want you to be strong and understand that it is up to you and your health along with the treatment from the doctors on whether or not you'd lower you're chances of being paralyzed or hair loss. Stay positive and believe. Think of your children and the happiness you will bring to them alive and well. We all have odds against us, but we all must standup against any challenges.
Hi Dee. I was in the same situation. My aneurysm happen so sudden. I woke up, got sent for some MRI's by my doctors and they told me that I had an Avm as well. I did my homework on the Avm. Yes it comes from your birth. Only stomach Avm's are most hereditary. Through the ups and down my best found advice was to let the surgeons do their jobs and the doctors use their talent. All we can do is stay healthy, active as possible or necessary, and learn more about our situations. Sorry I can't be of much help right at this moment.
6 years ago when I was 38. I had a AVM rupture. In the surgery to clean that up, they found a aneurysm. It was coiled and even though it has been a long recovery, I have done remarkably well.
Hello Amin Islam, Just to give you some information on radiation. I have had Gamma Knife Radiation for my AVM 4 times at Thomas Jefferson University Hospital in Philadelphia. The only side effect that I have had from this is hair loss at the spot of the radiation two out of the four times and some soreness at the spot of the radiation. This type of radiation is pinpoint and not generalized. There were no side effects that lasted and my hair grew right back without any problems. I also have become a Registered Nurse after my experience with my AVM so if there are any other questions that I might be able to help with, let me know!
Best wishes,
Gina
I'm sorry to hear of your situation ,but yes I had two AVM's.One ruptured about seven years ago that caused a massive brain bleed.Even yet today they don't know how I survived it as they said it was the most horrible they had seen where the person was still alive.Nonetheless I spent the next three months in the hospital-almost all of it in rehab.It left me permanently crippled with the right leg paralyzed and unable to walk.Initially the entire right side was paralyzed but gradually I regained use of my right arm.Today it is about 85% of what it was before.I took up guitar again which has been great therapy for me. I have a second clot growing from the other AVM though that they have told me they don't want to operate on to try and remove as it's deep in the brain and right on top of a major neural pathway.They are afraid I could easily die right there on the table-or end up worse off than I was before.They told me I have made such a great recovery/improvement they don't want to jeopardize that.As with you they want to just monitor it with an annual MRI-or sooner if the need arises.
I wish I could give you more info but I'm sure there are others here who can.I can and will say this though-try to keep a positive attitude and belief it will be ok.Don't let it stop you from living life either; find things you enjoy doing that aren't a danger for you and perhaps good for you as with my guitar playing;something that works the mind and coordination.If you're at all spiritual by all means keep faith too in your higher power.Notice I didn't say "religious" as you can be spiritual still without becoming religious.I pray and practice meditation daily which helps me a lot!In fact now I don't feel "right" if I miss.
Hope any of this helps.
Keep the faith and be well.
Love & Light,
Dennis
I actually get the results of my angiogram tomorrow. My AVM (located on the left rear of my brain) has grown from 30mm to 33mm since 2010, and three aneurysms showed up on my latest MRI. It was discovered only after a routine MRI done by my neurosurgeon before a scheduled microdiscectomy for a bulging disc. So now I can’t have my back surgery until the AVM is under control and am in constant pain. Who knows how long that will take? I am so frustrated right now- especially because all I want is to have a baby and that isn’t going to happen anytime soon.
Gosh I sound like such a Debbie Downer! I’m just so scared, I guess. I just got married, am about to graduate college, am getting a big promotion in the sprig. I just can’t understand why this is all happening now.