I’ve created this thread to contain a conversation about Embolisation. It was born out of this enquiry: Anyone suffer AVM intervention complications?
I am really sorry that you have to deal with all of this. I had glue put in my head for an AVM 24 years ago. I was so petrified to have the surgery, I was 39 years old but fortunately they could do it through the artery. The doctor said to me, it’s your choice where you want to have a bleed out either in the hospital surrounded by specialists that can hopefully save you or out on the street alone which would most likely be fatal. Of course, I chose the surgery. I have always stayed away from anything that strained knowing that is when your arteries are stressed. I stopped lifting weights at the gym and went to swimming etc. No one told me to do that, and I think they should at least warn us of those possibilities, but I remember prior to my surgery I was told not to strain in the bathroom, not to lift, keep your blood pressure low, try to keep your stress level low, etc. because these things put pressure on your arteries. So far, no complication but I’m told that the glue could slowly wear away, they didn’t know that at the time. Even though I was told I was cured that always stuck in my mind. I really wish you well these decisions are very hard. Keep us updated.
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Wow! This has to be the farthest back I have heard an embolization only being used to treat an AVM.
I truly know I was blessed. My doctor was Dr rosenwasser in Philadelphia. At the time the glue was a new procedure he pretty much wrote the book on the procedure so I was in really good hands although I was a guinea pig at the time. So far all has worked. I only had a little bit of eye damage and the terrible Brewer in my ear was gone when I woke. That was like listening to dripping water I don’t know how I didn’t kill myself with that in my ear. By the way, I was misdiagnosed for 10 years until I finally got to the right neurosurgeon and he referred me to rosenwasser. I was insistent there was something wrong. I start getting headaches a couple years back again and called him a little worried they sent me for all the normal tests and all looked good. But at that time they did say that over time the glue could wear away with me being 39 years old at the time it could still last my lifetime. I’m not surprised this is the longest you have heard but I think a lot of that has to do with people getting off the sites once they start resuming a normal life again. For instance, I haven’t been on this site in a very long time happened to run across your post and jumped on but for all of those years I was not here. So I think that there are a lot more success stories of longer times than we hear here. Keep us updated
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That’s amazing! Keep it going 
When I had my embolization in 2020, I asked my neurosurgeon at Barrow Neurological what was the longest 100% obliteration that they had at the time - he said 5 years. - I was also 39 at the time.
I came on here & just learned so much. I came across a member(I can’t remember his user name). He had 3 or 4 embolizations 10 years ago(so, now 12+) that completely held up. He was I believe in his late 40’s or 50, or so when he had them done.
It’s all a slippery slope in this neuroscience business. I’ve been on here fairly often just to see what’s going on. I’ve seen members who had craniotomies to remove their AVMs, that still grew back or grew new ones years later. And so on & on
Definitely cool to hear about yours tho. So you never had a prior bleed tho, right? Any idea of what type of embolic agent they used?
My understanding is that there are many factors after correction. I had no prior bleed into my brain. I started going to doctors because I had this horrible Brewer sound in my ear. Most Doctors said people hear all kinds of things not to worry, your young, crazy women as such. One day I had a nosebleed not uncommon for me in the winter months but I could not get it to stop. I went to an ENT doctor, and he wanted to cauterize it and did. We are not sure if that was due to the AVM or just a bad nosebleed but if it was due to AVM, it bled out my nose instead of into my brain. That would be pure luck. While I was there, I told this young new to the firm doctor my experience along the 10 years I was hearing this brewer and frustrated that I was not taken seriously. He said, let’s try an MRA. No one else did an MRA. We did and we found it. He sent me to a neurosurgeon who said “you need Rossenwasser go to Phila immediately”. Found out later that just going up 3 steps was enough pressure to bleed and I was doing the stepper all the time. That’s what started the whole AVM journey. Along my way I found a few things may matter. When you find it is important, if you are young, it can grow as you grow. Medically speaking size and location along with many things we can’t control matter, and will determine how and what procedure is used, this is the biggest factor. Personal things to help don’t stress your Arteries with the things we can control; Stress, walk away from arguments, keep blood pressure on the low side, straining even eye strain increases blood pressure. etc I was told these things prior to my correction and kept taking precautions but who knows what has actually helped. I went to swimming and gave up the heavy workouts. In my case, I am also lucky in the fact that I had the brewer as a symptom, and they tell me if that should start to open up due to glue deterioration, I would probably get that sign back immediately. Not sure it would be fast enough to save me but at least it’s a sign. I don’t remember the glue but it was the first type of glue they used because I was in the USA test run. My Dr I believe did this in Canada when writing his papers/documentations etc . prior to USA. Not sure if it was Canada but somewhere prior to USA. I have heard the older you get the less likely a bleed due to body changes and growth factors but don’t know. Also, I don’t drink or smoke at all, raises blood pressure.
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That’s a really useful thing to know, actually. I had a bruit (this is the correct spelling, but it is pronounced rather like ‘brewy’) and I hadn’t thought that if the glue started to fail, I’d likely get that symptom back. That’s useful. And it was also how I managed identify the problem in the first place.
Good share. Really useful.
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Mine was/is quite opposite
I had real bad pulsatile tinnitus in my left ear(the side where my AVM is) - it came in & out for about 4-6 months prior to my hemorrhage
After the embolization was done, that’s when the bruit came in - it’s gotten better, but right after it sounded like a good a constantly on electric transformer in my left ear. It’s one of things that made it hard for me to sleep.
Now tho, it’s about 10% of what it was at its worst + I got used to it
I found it very hard to live with that sound in my ear for 10 years. I could never be in a quiet room, go to a movie or quiet performance had to sleep with the radio or something on all the time and the list goes on I thought it was Dreadful.
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This is a slightly random share, hence I thought we should branch off into a separate conversation. There’s some interesting stuff in there.
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Living with the bruit was difficult, I agree. Mine got louder and louder over time – I assume it was growing in volume/flow as I was waiting for treatment. In the months leading up to treatment, mine got to sound like the washing machine on pump-out, once a second, every minute, every hour of the day. Plus, it was making me dizzy (worse when lying down) so I felt quite perturbed by its progress 
Fortunately, it was embolised in April 2017 and I’ve been good since. It took a long time to be happy / feel “normal” but overall I feel good these days.
That you’ve had an embolisation so long ago is astounding and encouraging to me as I’ve met probably less than a dozen people on here in all that time who have had an embolisation-only intervention.
Come to think of it, we lost @TJ127 recently and he had only embolisations (dating back a long way – 1978, I think) but his AVM was in his neck and upper chest to start with. It was probably never fully occluded and went on the rampage, doing further damage, stretching up into his head. He passed away from a non-AVM-related illness in August.
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That is very sad to hear. I think location and size really makes a difference along with treatment. I always believe sometimes we are led to something to tell us something. I haven’t been on the site in a long time, haven’t even thought about my AVM in a long time. Being here today brings so much back into my mind. I’m going to message them or call them at Jefferson and just ask them since it’s been so long has anything else changed and should I have any other tests even though I feel everything is fine. The last time I spoke to them was when I had some headaches can’t remember how long ago that was I’m guessing maybe 7 years. And all was fine at that time but it can’t hurt to ask them I guess things can change all the time. But who knows maybe that’s why I was led to the site today. I try not to dismiss messages. I wish everybody here well I will be staying close
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And honestly, Mike & I and others will be interested in how you get on.
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Thought of one more thing. Not sure where on this site it belongs but during my 10 years of being misdiagnosed and having the bruit sound in my ear, I was diagnosed several times in 10 years with Bell’s Palsy. Never triggering a thought with the Dr. that it may be something more serious. First time I had the facial paralysis was after a long night of drinking and dancing. I came home had the most severe headache ever (now I know what that was) looked in the mirror and left side was paralyzed. I took aspirin which was the worse thing I could do and went to bed. Next day still paralyzed headache and the headache gone went to Dr. and was told Bell’s Palsy. Had at least 3 or so other same diagnoses over the years. Just posting in case someone is getting the same diagnosis over and over.
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Ouch, dang
Mine was never diagnosed until my final large hemorrhage & sets of seizures.
Leading up to it for six months or so, I had all kinds of odd symptoms. Something that felt like I migraine & pressure behind my eye. I kno you mentioned a bloody nose - in my case I had spinal fluid run out of my nose. I didn’t know what it was & related it to the cold I was having at the time.
Also, from the scar tissue they found in the deep scans - they showed that I had multiple bleeds earlier in life. I can recall a pair of horrible head pains I had decades ago. I just never went in to have them checked out. I remember the one prior to the last one clearly. It was right before my son was born & I had no health insurance. It woke me up in the middle of the night. I didn’t know what to do, so I took the same, a handful of aspirin and about three hours later it went away.
Glad to hear your story & to hear you’re doing well. Let alone being the longest running embolization case yet.
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This is just such scary stuff. Luckily I live most of my life not thinking about it once it was corrected. I can’t imagine going through a hemorrhage. And that’s interesting about the spinal fluid. The Clapper headache I think is the big sign but as we both just said there are several others. I asked my neurosurgeon how I could have been misdiagnosed so many years and he said they just don’t deal with this stuff like we do. And that they so easily go to treatment. If you have a headache there’s so many things it could be they just treat the symptom. Clapper headaches, sounds in the ear, paralysis, seizures just get to a neurosurgeon. I feel for everybody on this site this is just very hard at the time you’re going through it. When I see people coming on here for the first time scared to death my heart just bleeds for them. But there is light hopefully at the end of the tunnel.
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I do have a question for you guys. Over the years I have taken ibuprofen but I think I remember them telling me Tylenol only now that I’m thinking back. What were you told about ibuprofen I know that can be a blood thinner type of medicine. So if there is a problem that could be a problem. Just let me know your thoughts I take it for for arthritis and my back. Just wondering as I age if I should try to get away from that somehow
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