My family doc did not really tell me what AVM is. He just said I need to be seen by a specialist. I was under the impression this is something not life-threatening and not serious.
I went home and google what is avm,then I realized this is something serious and I got so frightened. The neurologist I saw just said not to worry too much but said I should see a neurosurgeon for the treatment. I was lucky that the radialogist who performed my angio is a very nice guy; he drew a simple diagram and explained to me what AVM is and the location of my AVM. He then explained that because my AVM is in a favorable position, operation is a good option for me and he kind of said once is removed by operation, then, I will be cured. The neurosuregon I saw later also drew a very simply diagram to explain AVM to me. He also talked about different options and his recommendation.
This is how I would explain AVM to people,
The AVM is essentially a malformation in a certain blood vessel that leads to the brain and takes away the capillary action that most vessels have. As there is high blood pressure that starts from our lower body up to our upper body and brain, capillaries are used to help regulate the speed once it reaches certain organs. Basically, the malformation does not slow down blood pressure, which a normal capillary does, causing AVM patients to have a higher chance of seizures compared to the average person.
Hi Suzy/AKA Content Editor - My ex-fiance and family had to explain what an AVM was to me since I was unconscious at the time of bleed; that and I did some research on my own through doctors and online post-coma.
This site with various perspectives has brought about a lot of knowledge itself.
In my brother's case, the neurologist didn't really explain the AVM too much this time around, because he'd already had one as a toddler and our family was familiar with the whole thing. I'll have to ask my Mum how they explained it to her and my Dad back in 1989, when they first discovered my brother's.
However, I usually explain to people that it's like certain arteries in my brother's brain haven't broken off into capillaries as they are supposed to, kind of like a river not breaking into streams. I may be way off base with that one, but it's the closest, shortest explanation I could think of to fill people in!
My AVM, near my cerebellum, was discovered after it ruptured. I know about it much like everyone else. An abnormal connection of arteries and veins, joined together without any capalaries. I think it was one of my neuro-interventionolgist (didn't know they existed)who explained it to me.
Anyway. It was removed via a crainiotomy and I still (only 6ish months but still hate it) suffer from dizziness and double-vision. Fortunately, my neuro-surgeon is quite good and has removed AVM's before.
That about does it. Everyone has good info. I particularly enjoyed Kevin Rounds' comment.
My doctors told me nothing when I was diagnosed in 2004, I found out about it when I got copies of my MMI/MRA. At the time I was diagnosed in 2004 it was on my spine in the T4-T6 area. I was not given any information and was led to believe it was nothing to worry about. There were no follow up tests or specialists to see. A few months ago I was seen by neuro and had another MRI/MRA and was told that it had grown to the T8 area. At this time I was then told how serious it was and that I should expect at some time to be paralyzed from the belly button down. The AVM is pressing on my spinal cord and is symptomatic. I was told that the risks of doing anything out way doing nothing. So I just wait and see.
I have Klippel Trenaunay and it affects my entire right side of my body. It's a vascular syndrome. The risk if bleeding out and infection are the reasons they have chosen to wait and see and let it be, as I also have lymph edema affecting my entire right side of my body, which is also part of the KT.
I explain to people that it's an extra mass of blood vessels that is growing and pressing on my spinal cord.
After severe headaches and some cognitive problems, especially concerning short term memory, my PCP sent me to get a brain MRI. A few days later I got an email from the PCP which said I had an AVM in the brain and that was probably the cause of my headaches and that she was referring me to a neurosurgeon.
That's not a lot of information so I went online to look it up and then realized how serious it was. I also joined the AVM Survivors Network so that I'd have people to talk to who know more than I do about AVMs and could answer my questions.
I have only told a few friends, (each of whom reacted in pretty disappointing ways to be honest). I explained it as brain vein tangles that keep proper blood flows from moving through my brain; which is why I get headaches and sometimes have other side effects like forgetting things.
It's kind of a relief to know what it is that's been giving me these problems, but it's also strange to have a condition that I've never even heard of before. I'm glad to have the AVM Survivors to talk to. Sometimes they're the only people who really get it.
When I was first told about my AVM, the doctor told me it couldn't be cut out of my head and I needed to go to Shand's Hospital located in Gainesville, FL. If it got bigger then the 3.5 cm x 44 mm size it would surely kill me I was told, and that the hospital usually wouldn't work on something bigger then that in the brain. I was scared, kept having really bad seizures. This AVM was located in the temporal and left frontal lobe. This was 1997. I had radiosurgery and it took nearly 10 years for the AVM to shrink. I would tell someone in a better way: These are the options for you and how it works, instead of saying: we can't cut this thing out of your head and it could kill you.
I had entered the hospital via the emergency room as it appeared that I was having a stroke. I had just completed a vigorous morning work out, and had taken a shower. My wife found me in our bedroom "trying"to put my clothes on. I couldn't figure out how to do it. By the time I reached the ER, I couldn't answer simple questions... not even my name... The scarey part for me was that I worked as a Paramedic in my past,and even though I couldn't function normally, I knew what was going on, and I knew I was in trouble. It was like I was on the outside, watching this happen to me. Once in the hospital the day became a blur. I saw people I knew but couldn't quite figure out who they were. As the day progressed, I regained my senses and remember the doctor walking in and saying, "the good news is you didn't have a stroke... the bad news is it looks like you may have something called and AVM". Knowing how devastating a stroke can be I was relieved... little did I know. He explained the AVM to me this way... that it was a "coming together" of vessels, both arterial and veinous, and that the "crossover" created a situation in which the high pressure arterial blood flow, entering into the low pressure veins, could create an anuerism. He told me that he did not know much about the condition, but that he believed it was congenital. He was referring me to the Head of Neurosurgery at the prestigious Barnes Hospital in St. Louis, Missouri.
Within the week I had a consultation, then an angiograhm at Barnes. During the consult they pretty much blew off the idea that I even had an AVM. The doctor kept telling me it was probably a "migraine". Funny thing... I had never had a migraine before. At one point during the consult, I took the doctors hand and placed it on top of my head. I had a palpable pulse on top of my head that he could feel there. His comment was... "that's interesting". The pulse was, as we found out from the angiograhm, because I had both a "dural" and "Pial" AVM. That meant one was on the inside, and one was on the outside of my skull. The one on the outside had been forcing me to sleep face down for months... but then I didn't know what it was... When the angiograhm was completed the bad news was confirmed, and my wife and I set out on our AVM journey. We learned very quickly that we had to become our own "health care advocates". Doctors became very scary to us as we realized that their ego's sometimes got in the way of their diagnoses. Thank God for the AVM communities that are out here on the web. They are what saved my life.
I didnt know I had surgery until I awoke afterwards and was told by a nurse that I had brain surgery to save my life. I was told I had an aneurysm but noone told me the hows and whys until I was a week into my rehab. I had asked the nurse to please tell me what happened to me! With a look of shock she asked "Dont you know?" I told her that whenever I asked it seemed the question was avoided. She told me she would find out more and left my room she returned ten minutes later with a yellow sticky note with the letters A V M on it she told me I had an Arteriovenous Malformation, I had never heard of it so nervously I asked her what it was, she told me "it was a blood clot in my brain but that the doctors had clipped it", whatever that meant I wasnt sure but she assured me that the doctors had fixed me. Strangely that was all I could handle knowing at that point. Later another nurse brought in paper work for stroke victims and mentioned that I had a type of "brain stroke" My brain was so fatigued that I could only handle learning about my condition a little bit of information at a time. I was still confused when I met my neurosurgeon another week later. I wasnt sure if I had a stroke, aneurysm or blood clot He said that I basically had all three of them and told me to picture my veins and arteries like the branches on a tree that got tangled. I learned more about surgery clippings by hesitantly watching youtube which I was so glad when I finally did because my lack of understanding had me thinking that a quarter of my brain had been removed, which led to severe depression. Which led me to searching websites for support groups and that is how I came across your website!
My brain AVM went undetected until it ruptured after leaving the gym last February. I never exhibited any of the now known symptoms of an AVM that being headaches, dizziness, stroke-like syptoms, etc., however, was diagnosed with Bell's palsy 20 years ago which is a form of facial paralysis that was fully treated by a neurologist with steroids and all was back to normal within a few weeks. I often wonder if that was a sign of something that should have been looked into further by the neurlogist leading to the dectection of my AVM. The doctors explained the AVM to my family and I as it being an abnormal entanglement of blood vessels and arteries in my brain which lacks the Capillary network that slow the blodflow in and out of the brain. I try to explain what an AVM to people who ask in a very basic way and go into more details if they should ask. How I describe this is that it's a malformation of my blood vessels and arteries in my brain where in that area lacks the Capillary network we all have to direct and control the blood flow in and out of our brains.
Suzy,
Not explaining what it was, initially my neurologist told me I had an Arteriovenous Malformation and that I would need to see a neurosurgeon and probably would need surgery. I was terrified!!!
After seeing the neurosurgeon and during a 1-day hospital stay for my angiogram, a nurse shared with me an easy-to-understand hand-made pamphlet and diagram of what an AVM was. At last, I could simply understand what was wrong! Hooray!
My AVM did not show up on an angiogram and (back in 1988) was referred to as a "cryptic" (angiographically unseen) AVM.
Cryptic AVM's are now known as Cavernous Malformations, CM's.
The easiest way for me to describe an AVM, is that it would resemble a cluster of cooked sphaghetti, whereas a CM resembles a raspberry.
Though different in structure, both AVMs and CM's have a tendency to bleed.
Its kind of a late reply, but thanks for the welcoming and suggestion, feeling apart of this family already :)
I was told I had a mass of tangled blood vessels. Tell people roughly the same but as soon as you mention radiotherapy people seem to think it’s a tumor! Easier to tell them I have a malformed brain!!! Lol
My AVM is in my right armpit and was discovered during a brest exam. I was sent for a CT/angiogram and my doctor described it to me as a "tangled mass of arteries and veins". I would decribe it as the same and add that it's a type of aneurysm that can be treated several different ways.
My story is a bit odd. Im 29 today but I was 28 when I was doing an engineering project 42kms in the bush. I hiked up a hill, bent down and stood up to find that I had NO feeling in the right side of my body. What a strange feeling. Long story short...it was 4 hours before I get to a hospital. By the time I got to the second hospital (the first one did not know what to do and thought it was a pinched nerve) and they got the CT working ( it was broken when I arrived...typical small town) the Dr. came to me and the conversation went like this:
DR Mike: I dont normally show my patients this scan
Me: What?
Dr.Mike: (flips through his IPhone) This is your brain, and this is the blood on it. You have had a major bleed and you need to call your husband and your parents NOW. If I need to inject this medication in you I need you to know that it could be fatal.
Me: (first time I actually become very concerned and cry)
Eventually they diagnose the AVM. And they described it to me as a high pressure vessel in my brain that was developed while I was in the womb. Over time this vessels walls wear thin and the result is a bleed. On top of this, my AVM had 5 aneurysms on it. They said 2 month to 2 years and one or all would rupture and I surely would not live to tell the tale. I can go on and on about how they discovered my AVM was directly under the motor strip and they said I would never walk again. I learned to walk again BEFORE the surgery and then they had to revamp their surgery many times so as to not touch the motor strip.
I have told people the same thing when they ask what an AVM is. I tell them it is a vessel that runs directly from an artery to a vein without any capillaries between so it puts high pressure into a very localized spot of the brain. When this vein gets worn thin, the result is a bleed/stroke.
I would tell someone who was just diagnosed that there are cures for this and that we have amazing neurologists and neurosurgeons in this world. Be patient and find your support network as they will be key in your recovery.
I don't think the first part applies to me: I was 14, and when I heard "brain surgery" I kind of didn't pay much attention to anything else. But whenever I'm explaining it to my friends, I tell them "It's a knot of veins and arteries with no capillaries. It's kind of like a kink in a hose- the blood rushed through with a small hole to get through, so the blood vessels eventually burst."
I was told after my bleed and was taken to the ER. A lot of what happened from the moment I was carried down the stairs by EMS from my 2nd floor apartment here in CC, Texas until I rolled into a neuro ICU in San Antonio is kind of blurry and even today (a year later) I still have trouble finding the correct order of events. Anyway, I'm assuming I was told after my angiogram, which I believe was the final test to confirm the AVM. I know they told my husband it was an aneurysm first, which we believed because that was how my aunt passed, so it made sense. Then I woke up in a different room with the neurosurgeon touching my shoulder. He introduced himself, was incredibly nice and polite, an older gentleman. I asked him what happened, he said I suffered a stroke then asked if I knew what an AVM was. Of course, I said no, what the hell is that? Then he touched the right side of my head and all he said was "here" and I cut him off by saying, "That's where it snapped; where my migraines are." (I heard the snap in my head just before my left side went completely numb). Then he said, "There is a mass of tangled vessels in your brain here." But, I don't know, something about his face or voice or tone helped keep the panic back, obecause I didn't freak out or anything, maybe I was still in shock. My husband later told me that he was told this was an emergency situation and they would prep me for surgery for the following morning. So, I really had no time to panic. They gave me a shot, I went to sleep lol Whenever I woke up again, I found out a few more details which mostly went like this:
Me to Doc: What's an AVM again?
Doc: It's a nasty tangle of vessels that knot up on top or [sometimes] inside your brain, on your spine and sometimes on any other parts of your body.
Me: how did I get this?
Doc: No one really knows. All we can
assume is this developed in the womb and you've probably had this all your life.
Me: What about my baby? (I was 13 weeks pregnant)
Doc: We are sending you to San Antonio.
In San Antonio, I met Dr. Koebbe and Dr. Chen. Dr. Koebbe was my main neurosurgeon and Dr. Chen was the consulting neurologist or neurosurgeon. I'm not entirely sure who did what before the craniotomy. I saw Dr. Koebbe a lot, he has incredible bedside manners. After my second embolism he came to my room personally, straight from the base where he's an active neurosurgeon for the Air force. He was all decked out in his uniform and everything, first and only time I had ever seen him without his white coat and/or scrubs--I just wanted to brag about that part for a second LOL.
Because of the pregnancy, A few options were ruled out, like GK, which was fine by me. I'm more the type of person who pulls a tooth out instead of getting a root canal, anyway. So, I've learned that when it comes to something in your brain, because of the variating results in even the most seemingly similar cases, no Dr. will tell you exactly what they know about a cerebral AVM. There is a limit to how much hope they can provide you with. I also learned this is the same with both physical and occupational therapy. I received a lot of shrugs and "no one can really say for sure" from a lot of Dr.'s in different fields of medicine. Remember I was pregnant, so I had a few extra Dr's on the scene at all times LOL.
All in all, I would have loved to receive a guide to AVM's while I was in the hospital or rehab or even while I was in pre-op waiting for my craniotomy. I don't care if anything I post for the guide gets put in, I'm just happy to know that there are people out there willing and capable to do something like this. You guys truly are amazing:)
I had my AVM which was initially misdiagnosed as the flu by several doctors, near to where I lived in Steilacoom, WA, the ONLY decent thing that came out of Vietnam (ugh). It was operated on the 15th of Feb 72 at the VA hospital in Seattle, which eventually turned me into an epileptic and seizures were NOT supposed to be a problem, but were and for over 6 years. I was taking dilantin and phenobarbital, but they weren't controlling my seizures that were NOT supposed to be a problem! Finally, I called PA where my once-loved and now deceased parents lived, and asked them I don't know what! So, in Jan 75, having no luck whatsoever with pheno and dilantin, I boarded a plane with its destination being the Philadelphia airport and my ignorant and once-loved parents. I had my own roofing business at the time. Needless to say, I lost my roofing business plus the $18,000/yr. that went with it. My ex-wife was earning approximately $12.000/yr. as nurse. We lived in a beautiful 3 bedroom, custom built ranch at the time and had a beautiful tri-color collie, my FAVORITE breed of dogs. I abandoned all of them in 1975 because those clowns were drugging me with the WRONG medications for the seizures that were NOT aupposed to be a problem! Needless to say, I lost my roofing business and all of the hopes and dreams that went with it! In the rotten state of PA, I "found" the RIGHT medication (Primidone) to control the seizures that were NOT supposed to be a problem. However, I, also, lost my wife and children, not to mention the collie dog that was STOLEN from me as we slept in a motel in Fargo, ND. That was in the summer of 1975, I believe. Since the weather in western WA is mild, year around, it was an ideal place to do roofing (my love) but the correct way. In PA, we applied roofing materials the WRONG way and I learned how to apply roofing the right way in WA State. With the help of blood tests (which I wasn't given in WA state AFTER my supposedly successful brain surgery in 1972, I discovered the RIGHT medication to control the seizures that were NOT supposed to be a problem. While all of this was going on, I lost my wife and children, not to mention that home we had in PA. a place that I wish that I NEVER heard of and whose "weather" was very similar to that found in the bane of my life, Vietnam. where all of my mental problems began and at age 23! I was 30 when my AVM burst and it was located deep within my left frontal lobe where one's judgment is located. I, recently, read a book entitled "Coping with Mild Traumatic Brain Injury," and it describes, EXACTLY, what caused my epileptic seizures which I had for over 6 years. I NEVER knew any of this, and just found out about 2 months, ago. I'm stuck on the hated East Coast, now, and live with my bichon frise (dog) in a low income apartment and long for the day that I'll return to western WA State and its liveable weather. However, I'm, almost, 71, now, and there is really nothing out there for me, anymore. To hell with this crap!
My son, Connor, then almost 3 years old, was getting a haircut when the hairdresser noticed that his soft spot was still open! She seemed alarmed and so I took my son to his pediatrician to ask him about it. He referred Connor for an MRI and the avm was discovered. I'd never heard of an avm; 15 brain embolizations later, he is still doing ok, but his case is very rare. He has never had a seizure or bleed and we thank God for that. Prayer works! Connor keeps developing new avm's, so his dr. wants to try Avastin to see if it will stop the growth. Meanwhile, we are seeking a 2nd opinion from Dr. Speltzer.
Thank you for the reply Kim. I wish you and your young son the very best. I've heard of Dr. Speltzer and he's awesome. :J