I have an AVM in my left temportal lobe. I had 3 embolizations and 2 rounds of gamma knife. I also had a couple aneurysms. Did you know there's different types of aneurysms?? Mine was a bowl shape, not as dangerous as a hourglass shaped one. They filled mine with glue to be safe, they were caused by my AVM. They are caused by the AVM because the way the blood flows and pressure on the veins/arteries. Let me know if you have any questions...looks like you have a TON of responses. Hope all goes well.
unfortunately we didn't know I had my avm until it ruptured... I'd suggest getting it taken care of... i would never wish the pain of a cranial hemorrhage upon my worst enemy...
I had an AVM resection (surgical removal) in March of 2011 after 5 embolizations. Prior to the surgery I also had an aneurysm, and was told it was a direct result from the AVM due to the increased amount of blood flow, unable to be "slowed by the capillaries." After some discussion with my neurosurgical team at UIC (Chicago), they felt (and were correct) that removing the AVM would also result in a dissolution of the aneurysm. Having an open dialogue with your medical team and asking a ton of questions, it your best solution. This is frightening and can be life changing, so NO question is a dumb one. Good luck and God bless.
Dee and Other posts: Hopefully this post can offer some encouragement hope for others who are in similar circumstances. I suffered an AVM bleed on Father's day 2010. After being checked on for not attending a Father's day function, I was found on the floor of my residence unconscious bu still breathing. I had apparently been there for up to 12 hours. After being hospitalized an MRI showed a ruptured AVM located in my brain very close to the cervical cortex. Ahole was drilled in my head and a catheter was inserted to relieve the pressure. After 7 days in ICU n an induced coma, I was awakened and put through some initial tests. The AVM stroke was located mostly in the right side of my brain, which did not effect my speaking, swallowing, or eyesight abilities any more than prior to the stroke. However, my left side was rendered immobiile leaving me with no initial use of my left arm or hand or my left leg. I was immediately put into both physical and occupational therapy.
I was sent to have an angiogram which unbelieveably showed that i actually had two AVMs,one on top of the other, and one of them had a 3cm aneurysm embedded in it. I met with what I and my family were told were some of the highest regarded brain surgeons here in the Southern California area, but all said that due to the location of the AVM and the relative small size of the aneurysm, that invasive surgery was not an option. So instead, I had the AVM radiologically treated in December 2010. Since that time i Hve been monitored every six months with results tha hve shown that there ha been no growth or further formation in either the aneurysm or either of the AVMS. They haven't yet started to reduce or change in formation. I am scheduled for another angiogram this December for further results. I know and feel in my heart that while having this condition is no pcnic for anyone, that I have been blessed with the ability to fight off this condition and wish to offer those who have not had the success that i have, all the information and support that I can. With determination, and stubborn way I have fought off the loss of the ability to work, which included a somewhat successful business aand a considerable of other tangible items. I am able to live on my own, have gained back the use of my left arm and leg, learned to walk and drive again. I am still working on the memory and what they call cognitive issues which I understand may or may not happen. But enough about me and I look forward to communicating with all of you as life proceeds.
Mikey
Dee,
Is not this site amazing to make us realize we are NOT alone in our AVM journeys! Before my brain surgeries in 1990, I lived over a decade with my AVM, in my late teenaged to late 20's, where I never knew ANYONE who had an AVM! Back then, I felt so alone. How the world has changed, in good ways, where people like us can connect and help each others, just like that.
Good luck to find some answers for yourself here. With how many people have connected here for you, I bet you have a better knowledge than you did before, right?
We are all Blessed to connect here!
Lisa A. Stuckel
Hello,
My AVM was fixed after a small bleeding, thanks to embolization procedure. It was a high flow pressure relatively large AVM (about 3 cm nidus, and 3 cm for a large venous dilatation) that included 3 aneuvrysms into the abnormal shunting structures, and was located in the frontal lobe. But I have also another aneuvrysm of 5 mm diameter lying on the carodid siphon, i.e. in an intracranial sinus. It is considered as a consequence of the AVM high flow pressure. However, 6 months after the embolization its size did not decrease, a not rare possibility sue to its origin (high flow pression upstream). Due to its localization, only a follow up will be done... except if bleeding! I think that the size and the localiztion of aneuvrysms are important for the physician decision.
Iām so incredibly grateful for your responses!!! I feel less alone on this site and am so glad we are all around to tell our stories. I really want to forget about this aneurysm and live my life but it keeps bogging me down on a daily basis. I guess I want to feel confident about my doctors plan for me. I keep reading unsettling info about aneurysms connected to AVM 's being extra dangerous. : / my doc is more or less saying the opposite.
God bless and thank you so very much
And of course HAPPY THANKSGIVING!
Happy Thanksgiving!
Hello Gina:
Just let you know My treatment name Sterio Tactic/Novalis . Now advice me or give your experience regarding side effect . Please.
As I can see from these responses, there are quite a few of us, that have had both. Very surprising to me since I've never hear of anyone else having both.
Guess I'm not as special as I once thought!
My story starts with a ruptured aneurysm, which was originally diagnosed as a ruptured AVM.
They kept telling me how lucky I was that it wasn't an aneurysm !! The admitting DR. went on vacation -and his associate, looked at MRI, and spotted the aneurysm. He decided that surgery should be done A/O.
During my surgery, he felt that he couldn't clip it as close to artery as it required. He got on the phone made some phone, and was referred to a neurosurgeon, who does about 250-300 per year.
That's my point. Be sure to ask, how often they have performed this procedure.If it isn't over 200, move on. It has been nearly 15 years since my last surgery, ( for AVM )and I feel very good. Not like I was before the bleed, but then again I'm 15 years older. It's a very SLOW porcess.
norm
Does anyone know if aneurysms usually grow or stay the same size? I'm sure it varies. I would like to think that aneurysms caused by AVM's would at least stop growing if not go away or get smaller after AVM treatment. I also wonder about traditional aneurysms. I keep reading that *most* aneurysms don't rupture at all. Unless most aneurysms are under 2mm then that would mean that even bigger aneurysms don't generally rupture. Does that even sound right?
Just curious. Being a patient is so exhausting :) Happy holidays!
Hi Dee, I just had embolization of my dural arteriovenous fistula that had an fusiform aneurysm on the artery feeding the fistula. My neurosurgeon embolized it with Onyx glue at the same time he embolized the fistula. He said in my case the aneurysm was much greater of a risk for rupturing than the risk of my fistula hemorrhaging and so it had to go. They are going to check my fistula in another 6 months because it wasn't completely obliterated, there is a remaining venous feeder that is very small. Still makes me nervous that it's still "out there" and I wonder if it could form another fistula, but I'm going to ask all of those questions at my post-op follow-up in January. Best of luck to you!
I had a few Aneurysms inside of the nidus of my AVM, the biggest Aneurysm was 9mm. I'm not sure the size of the other one's but I had a Embolization done for the AVM and they clipped the Aneurysms while I was having the Embolization. My neurologist told me that the Aneurisms came from the AVM. I now have another very small Aneurysm that they are just watching now. Some time's if you don't get the answers you are asking about then I would get a second opinion just to ease my own worries. Good luck to you and God bless you.
Hi leela_pip ā¦ I was just reading your post and came across "but talking and swallowing were temporarily not possible". My partner had his AVM embolisation on 12 December 2013 and has had huge trouble talking and swallowing since then. They are saying it is because of the length of time of intubation (procedure took 5 hours and was expected to take 1 hour). He is able to speak but his voice is terribly croaky and difficult to understand and he is on a pureed food diet because of his difficulty swallowing. I am just wondering how long it took your speech and swallowing to improve ā¦. Cheers Supporter ā¦
1 Like