Hi I just logged back on and saw this. I went to the dr today after having an angiogram. He wants to do embolization and he said that a vein running to the avm has a bulge in it .
So I’m very worried about that. I am looking into a second opion and I have still never had a symptom.
I am trying to figure this out and like you I keep thinking is treating it worse or just leave it alone. I’m 50’with 3 teenagers and I want to be around for them. Do u have yours checked yearly?
Hi I went to the DR today and he definitely wants to do embolization. He did tell me there are risks to it and I am terrified. I have a vein running to the avm that has a slight bulge. He is not overly concerned as he told me I did not have to rush into anything . I’m 50 and possibly had this since birth.
I just keep asking myself is it worth the risk of embolization or leave it alone. But I am leaning towards treating. Any help would be great
Thank you for the response. I love this group noon else understands what I’m feeling . It’s nice to have people to talk to that have been through it😊
We know the problem: risks of treating v risks of leaving alone. The doc should give you some figures for these risks. Also, depending on the type of AVM most seem to be considered to decay over time – the risk steadily grows at a few % each year. I don’t think this is the case for a Type 1 DAVF but most others docs tend to indicate overall increasing risk.
There are no good definitive trials to demonstrate that treatment is the right thing to do, so that doesn’t help. Doctors will tend to tell you if they believe the risks of treatment are worse than leaving alone: they would more strongly suggest “watch and wait” if treating is likely to do you noticeable damage.
My DAVF was changing over time. My first sign was about Sep or Oct 2015 when I could hear a pulsatile tinnitus quite faintly, with my head on the pillow at night. By Jan 16 it was a bit louder. By spring 16 it was clearly louder than it had been. I saw an ENT consultant in the August by which time I’d been able to record the noise of my AVM bruit by pressing my mobile phone microphone to the back of my head. By the autumn I felt dizzy. By Jan to Mar 2017 it was like having the washing machine pumping out water all night and lying down with a pillow sent me really quite dizzy: I was “sleeping” on a pile of pillows by that stage and quite desperate.
Naturally, I knew what it was, what was going on and worried myself quite considerably. I found my embolization in the April of 2017 quite gettable-throughable and while it took me a long time to feel “fixed” I’m sure I was more relaxed about life post op than I was before. Today, everything is back to normal.
If I were you, I’d find out the relative risks of leaving it v treating it. It’s fair to say that no treatment is risk-free but you only want to choose a treatment where the risks are low probability. I think my doc said about 5% risk of stroke or death through the procedure (which sounds quite high) but I’ve come out ok 
There was no indication of a risk of loss of sight or motor function or anything like that.
It’s quite a choice, isn’t it? Has to be your choice.
Very best wishes,
Richard
Hi yes he definitely wants to treat this. I think because there is a slight bulge in a vein . He didn’t say it had to be done ASAP but he would like to do the embolization.
As I’m sure you know it’s just a lot to hear the risks. But most people say thrr were y get through it ok . I’m young and very healthy so j hope that matters through all this.
It does.
It’s the vein health we need to be concerned about because they are not designed as high pressure vessels like arteries. It is the arterial pressure blood playing into the vein that eventually leads on to it rupturing.
Yes that’s what worries me. But I have very good blood pressure usually low and I am going to try and get a second opinion. Did you do that or did you feel comfortable with your DR. Sorry to be asking so many questions I’m just very nervous . But thank you for all your help
It’s fine to ask. We’ve all been there.
For me, Embolization was my favourite option, so when the doc said that, I was comfortable with it. I would say that because my AVM was changing quite rapidly, I felt the need to crack on with treatment. Delay wasn’t where I wanted to be.
Plus, my doc was quite a mechanical kind of chap: slightly odd “bedside manner” but came across as a complete “engineer”: someone who was a bit weird because he was more focussed on the problem and what to do about it than managing the patient’s emotions. I thought to myself: if I need to trust my life to someone, this is the guy.
It doesn’t matter about bedside manner. It matters that they know what they are doing and are appropriately confident with the job in hand.
I wouldn’t have been confident in a show-off. I preferred the engineer. It’s all down to what gives you the confidence to go ahead.
Yes that’s the way my DR is very to the point tells me the way it is . His bed side manner is ok but like you said he is one of the best here. I guess I want to hear a guarantee I’m going to be ok and I know he can’t do that.
Dick is right on point with this - there is no guarantees(in either direction)
My BP also, was a ok - until I had a sudden rupture after being in a sauna for the 1st time in my life < what a way to find out 
Being healthy does help(a lot) - according to my neuros that’s what helped me bounce back so fast
I know things aren’t that easy in the world of what is - but, I just can’t comment on anyone else’s work other than Barrow Neurological. I’d look at your neurosurgical team’s stats - how many cases have they done, how many total obliterations have they reached on first try, what are your chances of total obliteration of your AVM, material used, total procedure time, etc.
I still don’t know if you mentioned the placement of your AVM - mine was very nasty, but, my neurosurgical team completed miracle work.
After what happened, moving out of the state is out of the question for me - I don’t want to be more than a few hours drive from them if the need ever arises again.
I got all of these questions answered at BNI without hesitation - too bad it was after the procedure since my AVM caused me to hemorrhage & I was left without choices.
Very sorry to hear lady, none of this comes easy. I am sure you’re aware of the possible side effects - but, the only thing I can add that I do know is factual, is that embolization seems to be becoming more of a standardized AVM repair procedure with solid outcomes - from what I have read at least.
Hi thank you for your reply it makes me feel better to hear from others like me.
My Dr is very highly recommended and his specialty is AVM and anurisums . He is the best in my city I have read reviews spoke to nurses I know and they all say he is the best.
I have read a lot about embolization and I think that’s the only option I have right now. The Dr said it cannot be operated on its to dangerous.he said it’s on the right side in the middle . There is a bulge in one of the veins running to it . He said it wasn’t an emergency but he does want to do embolization to stop the flow.
I have not worked out like I used to with heavy weights since I found out and I have no symptoms of now. I’m going April 12 for a consultation and get the ball rolling.
I’m scared to death but I think treatment is safer than not .
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I get called every 2/3 years for an MRI and angiogram :
Hello did you have an embolization is that why they check it
Question had an embolization on May he got 98 percent going back in a couple weeks for another angiogram. Anyone had dizzy spells after this. I had a bad one today and now I’m fine . I’m camping so not sure if I’m dehydrated was hot yesterday. But it scared me . Any feedback would be great
I wouldn’t call em “dizzy spells” - mine are more of a feeling of getting hit with a 2x4 without the pain - I get disoriented, kinda - some have last for days - heat, stress & dehydration seem to help bring it on
Yes. Definitely had some periods when I was very dizzy post op. Happened several times.
I asked to get checked out but all was ok. Doc’s view was I just needed to get used to the new flows going on.
Was very disconcerting but for me turned out to be nothing.
Thank you for that . We are camping and I was in the sun yesterday and it’s very hot . And it happened this morning and your right it was like I was knocked over I actually fell on my bed and now I’m fine , I drank some vitamin water and water . But it scared me to death especially because im an hour from home .
I was at work. I stopped driving for a week until I got to talk to my primary and she encouraged me that for what I’d described I was still ok to drive but I got checked out.
It wasn’t the only time but I’d say I only had the one big session about 6 months post op that really worried me. Whether it was not being hydrated enough, I don’t know but hydration is a good thing to stay on top of.
Thank you I always know who to go to with questions. All I know is that scares me a lot. I’m going next week for boood work and then probably in a couple weeks for an angiogram to see if I need one more embolization. They got 98 percent of it so I’m hoping the rest is gone.
If it ever worries you, just get it checked out but hopefully, it is nothing.