i was told by a neurosurgeon after a recent MRI that i have no trace of the AVM remaining. i realize this is very rare, and he was shocked, but i also know that MRI’s are not 100% accurate and that often, an angiogram is needed to make absolutely sure. i am wondering if i should have an angiogram; the only one i had was right after the hemorrhage, and i remember it being extremely painful after it was done. if anyone else has had this procedure done, were you put under anesthesia for the test, or were you partially conscious because i was put fully under. thanks for the info!
I also was wondering about this!! I canceled my followup angio because I didn’t think it was very necessary. I don’t have insurance and was still trying to make arrangements for the first bill and the hospital said I couldn’t get the follow-up angio until the 1st bill was taken care of (I could’ve bought a really nice house for what they charged and I probably couldn’t pay it off in my entire lifetime, let alone in 2 months), so I guess that made the decision for me.
They also left a catheter in one of the veins going to my head from the 2nd or 3rd angio pre-surgery so i didn’t want to do anything to dislodge that. Plus shouldn’t they do a less-invasive procedure 1st to determine if maybe another angio is absolutely necessary??
And I’m just done having procedures and being a guinea pig at my own expense!!
And I was awake for mine and just the memory of having that nasty stuff pumped into my head is enough for me to say “No”.
Elle,
I believe angio is the definitive way to determine whether there is an AVM. You might talk with your neurosurgeon about having one done if you’re feeling uncertain that the AVM is actually gone, to see what he has to say about it. Could you have someone else take a look at your MRI pictures for a second, or even third, opinion first?
The first time I had an angio they had to have me awake, but I always ask to be put under, and they’ve been able to do that the other times.
How long ago was the MRI before this last one? Maybe you can ask to have another MRI in say six months, and depending on what it shows you could then ask for an angio if you’re still concerned?
It’s great that it looks like the AVM may be totally gone at this point - I hope it really is!
Hi Elle, This is Libby. First, Congratulations on the prospect of being rid of your AVM. I hope it’s true. IN 1974 (eons ago, I realize) I had an arteriogram during which I was fully conscious. I am about to have another–my second–and am worried that it will be as invasive and uncomfortable as I remember the last one to be. If you elect to have one, let me know how it goes and what your doctor offers you in the way of options.
Hi Elle-
I say go for. Sure it’s going to be uncomfortable if they keep you awake, but isn’t the peace of mind worth a short period of pain? In the grand scheme of things…it just seems like the right thing to do! Having said that, I’m a no-brainer and so I’m always asllep during mine. But I’ve has upwards of thirty and have never had any real issues with pain after the fact. But I knowmost brainers are kept awake so that the can better monitor how your bodyis reacting.
Either way, good luck and congrats on being AVM free!
Hi Elle,
I had a really good experience and would not think twice about going back for a final angiography to say good by avm. I was a little afraid going in for my first angio because it was the first time I ever had any sort of procedure and the fact that they were targeting the brain made it even more scary, Keep in mind I had just been diagnosed with avm the day before. However I had really cool doctors at Mission Hospital, Mission Viejo that took the tension off. They put me in a twilight sleep and I was completely comfortable during the procedure. All I remember was being wheeled into the room, The anesthesiologist jokingly saying OK I’m going to give you a shot of whiskey, think of a nice vacation spot, lol. I was to a limited point aware of what was going on and I could feel the warmth of the contrast when they injected it near my neck, but I was in happy happy land so all was good. The only pain I felt was right at the end when they plugged the insertion point in the groin + the tenderness down there for a couple of weeks afterwards. Over all it was well worth it for the clear images they got.
They also left a catheter in one of the veins OMG I would have Strangled that doctor. Was this during embolization or just an image angio? I know they use different size catheters when doing embos but I’m pretty sure they use just one piece tube for image taking…
The angio I was awake for (again, the first one) wasn’t nearly as bad as I had thought it was going to be. Not having any experience with them, I was very nervous, mostly just because I was going to be awake for it. But they gave me a fabulous ‘cocktail’ before hand and it’s so good that it makes you really not care about what’s going on. They told me beforehand that I could get more of the ‘cocktail’ anytime I felt like I needed it and that all I had to do was ask, which I did, a couple of times.
The only time I really felt any discomfort or pain was when, apparently, they got the catheter to the area of my spinal cord where the malformations are, and suddenly I had pain on the right side of my back. I thought I was having really bad muscle spasms and it made me kind of flinch a little (you know you have to be really still), and suddenly everyone in the room was telling me to be still and that it wasn’t muscle spasms but rather the catheter. That pain didn’t last for very long though and other than that I was comfortable the entire time, and even joked with everyone a couple of times.
I did, and still do, have discomfort every once in a while in the groin where they always go in on the right side (for some reason they can’t get the catheter in on the left side). But it isn’t too bad and bothers me most when I’ve overused my leg, or when my cat or dog puts a paw right there and pushes off when they jump off my lap. I think there’s just some scar tissue there, and one of the docs in September confirmed that.
I think how much or little discomfort a person has with an angio just depends on the person, their pain threshold, whether there may be scar tissue present, etc., so some will have more discomfort or pain where others have very little or none.
I agree with Shalon that if having an angio will give you peace of mind, then there’s really no reason not to ask for one, especially since it’s been so long since you’ve had one. Even if you have to be kept awake, you’ll be given the nice ‘cocktail’, and like me, you may even fall asleep for some or all of the procedure and they’ll wake you if they need you to respond in any way.
hey everyone, thank you for the replies and encouragement. i am having quite a time with this whole business; first off, i have had so many injuries (broken bones, head injuries, car accidents) that pain really isn’t on my list of things that would keep me from having the arteriogram. however, i’m feeling sad at this period of time, because i really feel like my mother doesn’t understand what i’m dealing with. she has always been so supportive, but as soon as i mentioned to her that i’m struggling with depression again i feel that she just got mad at me and i haven’t heard from her since. when i mentioned i thought i should have an angio just in case, she said it was unnecessary even though i told her MRIs are not 100% accurate, and she told me that i need to forget about that and focus on school. well, i’m doing well in school (aside from the depression) and hello, it’s not HER heaed it is MINE and frankly i’m pissed that she doesn’t seem to think the peace of mind is worth it. i feel like she left me on my own when i really need her support the most. i do want to have the procedure done, and she seemed open to thinking about it after school is out but i don’t know, i just feel like i wish she cared more. thank you all for understanding
Elle,
Remember that the risk of bleeding is 2-4% per year and that is cumulative so every year your risk increases. As I mentioned in my message but for the sake of others, 1 of my children has 4 AVMs, one was visible with MRI, none with CT scan. Second child has 2 AVMs, one is superficial and was visible with MRI but the other was not. Angiogram is the gold standard, no way around it. I’m sorry you’re having problems with your mom, I’m sure that doesn’t help with the depression. Just remember that you are an adult. You, and only you are responsible for your health and your life. You have a wonderful future ahead of you and dealing with your history of AVM is only going to ensure that your future is as fulfilled as possible.
As for the anesthesia, doctors are very accommodating and if you need to be put under they will. This procedure requires you to be completely still so if you are anxious they would prefer to put you under than risk movement. I was 12 when I had mine, my daughters were 5 and 8. None of us had any problems afterward. They were up and walking around the day after the procedure.
{{{{Hugs}}}}
We are in the same area so if you ever need anything let me know!
Christine
It was stuck during embolization, I wrote it wrong, but what can you do about it…
Brett Dalbeth said:
They also left a catheter in one of the veins OMG I would have Strangled that doctor. Was this during embolization or just an image angio? I know they use different size catheters when doing embos but I’m pretty sure they use just one piece tube for image taking…
Angiograms are no fun and are not without risk. However, everything I read still indicates that medical test is still the most accurate. I HATE being on my back and I HATE being still. Therefore, having an angiogram is torture for me. I had 3 of them. I know someone who had one recently and the procedure has not changed in 22 years. YUCK.
It was worth the agony for me to know that time bomb was out of my head. You have a very hard decision to make… Good luck!
hey I’m Chris,
It was really good to read this topic especially you when mentioned your current studies at school. I’m currently going through a similar stage in my life - being depressed whilst at school which is really hard for me. I know what its like with a mother not understanding what your going through, but over time things has changed. My mother has now become more understanding over recent months due to her own internet research of AVMs. I also was very suprised to hear that your avm disappeared but your still enduring pain.
Best of luck for everything,
Chris.
elle woolley said:
hey everyone, thank you for the replies and encouragement. i am having quite a time with this whole business; first off, i have had so many injuries (broken bones, head injuries, car accidents) that pain really isn't on my list of things that would keep me from having the arteriogram. however, i'm feeling sad at this period of time, because i really feel like my mother doesn't understand what i'm dealing with. she has always been so supportive, but as soon as i mentioned to her that i'm struggling with depression again i feel that she just got mad at me and i haven't heard from her since. when i mentioned i thought i should have an angio just in case, she said it was unnecessary even though i told her MRIs are not 100% accurate, and she told me that i need to forget about that and focus on school. well, i'm doing well in school (aside from the depression) and hello, it's not HER heaed it is MINE and frankly i'm pissed that she doesn't seem to think the peace of mind is worth it. i feel like she left me on my own when i really need her support the most. i do want to have the procedure done, and she seemed open to thinking about it after school is out but i don't know, i just feel like i wish she cared more. thank you all for understanding
Barbara,
It’s true that angiograms haven’t changed. My girls had the exact same procedure that I had 25 years ago.
Barbara Hanson said:
Angiograms are no fun and are not without risk. However, everything I read still indicates that medical test is still the most accurate. I HATE being on my back and I HATE being still. Therefore, having an angiogram is torture for me. I had 3 of them. I know someone who had one recently and the procedure has not changed in 22 years. YUCK.
It was worth the agony for me to know that time bomb was out of my head. You have a very hard decision to make... Good luck!
oh just as another snitch of info, the avm in my brain was untreated/able. it was too deep inside the brain for them to reach by any procedure; this was why the new neurologist was so surprised he couldn’t see any of the AVM left. has anyone else had it disappear after bleeding?mine was very large, and left severe damage to my left side; almost entirely paralyzed at first, though i’ve reained some (slight) mobility. i’m so scared it could still be in there. i want to know!
No wonder you’re worried. Doctors do not like to do angiograms because they’re so invasive. But when we know that it’s the gold standard for seeing AVMs, it’s tough to accept anything other than an angio. I am in the same boat as you, only it’s my daughter who’s had a “normal” catscan. I will not relax unless she has an angio. My daughter had an angio earlier this year. She was under anesthesia. She spent an hour or two in recovery as she came out of the anesthesia. She was sleepy, but otherwise she was fine.
Hi. My name’s Terry. I just joined yesterday (been looking for a place for a while.) My AVM hemorraged on Jan. 28, 09, my first embolization was done, they said “come back in April and we’ll finish it”. When I went back for the second one it was just gone, they couldn’t find anything and YES they were very shocked. I have to go in a few days for my follow up angiogram. It will be ok, the decision is yours but it is worth peice of mind. In my opinion anyway. And yes congrats on it being gone. You’ve got a real bright future sounds like. All the best. Yes, I also have probs with movement on left side and with balance.
Barbara Hanson said:
Angiograms are no fun and are not without risk. However, everything I read still indicates that medical test is still the most accurate. I HATE being on my back and I HATE being still. Therefore, having an angiogram is torture for me. I had 3 of them. I know someone who had one recently and the procedure has not changed in 22 years. YUCK.
Even though the first angio wasn’t nearly as bad as I thought it would be, the laying still, flat on the back is definitely the things that are really hard. Back pain is what mostly makes that so bad for me.
It was worth the agony for me to know that time bomb was out of my head. You have a very hard decision to make… Good luck!
Terry Leneave said:
Hi. My name's Terry. I just joined yesterday (been looking for a place for a while.) My AVM hemorraged on Jan. 28, 09, my first embolization was done, they said "come back in April and we'll finish it". When I went back for the second one it was just gone, they couldn't find anything and YES they were very shocked. I have to go in a few days for my follow up angiogram. It will be ok, the decision is yours but it is worth peice of mind. In my opinion anyway. And yes congrats on it being gone. You've got a real bright future sounds like. All the best. Yes, I also have probs with movement on left side and with balance.
Hi Terry,
Welcome to the site.
It’s great to know that while there are some AVMs that grow back there are some that disappear unexpectedly too. That’s so awesome for you!
Thank you for being here. It’s still hard to deal with the situation but I’m here and thankful. I’m just glad the Drs. I have are awesome. 
Tori said:
Terry Leneave said:Hi. My name’s Terry. I just joined yesterday (been looking for a place for a while.) My AVM hemorraged on Jan. 28, 09, my first embolization was done, they said “come back in April and we’ll finish it”. When I went back for the second one it was just gone, they couldn’t find anything and YES they were very shocked. I have to go in a few days for my follow up angiogram. It will be ok, the decision is yours but it is worth peice of mind. In my opinion anyway. And yes congrats on it being gone. You’ve got a real bright future sounds like. All the best. Yes, I also have probs with movement on left side and with balance.
Hi Terry,
Welcome to the site.
It's great to know that while there are some AVMs that grow back there are some that disappear unexpectedly too. That's so awesome for you!