AVM Guide for Patients & Their Families – Question #2

For those that are just now joining us (or even for those following along) AVMSurvivors.org is in the process of preparing a guide for individuals that have been diagnosed with an AVM. The purpose of the approximate 20 page guide is to provide hope for a vibrant future, information about treatments, life expectations, and help for family members encouraging an AVM survivor. By participating you will be a source of help & encouragement to newly diagnosed AVM patients, their family, and concerned friends.

By responding to these questions, understand that your answer may or may not be shared in the guide.

After the questions have all been answered, a team from AVMsurvivors.org will begin the editing process, which will conclude with a guide that for many years can be a reference of hope for those in our growing community.

Question #2, would you please answer the following for the guide team?

β€œWhen you first heard about your AVM, how did your doctor describe it to you and more importantly, how would you describe it to someone just diagnosed that says β€˜what’s an AVM?’”

Remember, these people come from all walks of life and are probably very scared or just plain unaware. The hope is to do what we can to alleviate some of that fear or even alert them that something may be going on. Your answers can help us do this.

Thank you for participating, and the team looks forward to your answers!


The AVM Guide Team

Suzy C. Epley - Content Editor (at least they told me this)

"It's not a tumoh" (heavy Arnold accent) lol

Suzy, my doctor told me about my avm about 3 days after I woke up from my coma. He told me that I "had" an entanglement of veins in my brain, that they were kinda like spaghetti, and that the avm had been removed via brain surgery. I describe it pretty much like he did, lol.

I found out about my AVM after experiencing lossof vision, feeling sick and a really severe headache which lasted a couple of hours. I was referred to have an MRI scan done on my brain. 3 weeks later i recieved a letter from the hospital stating that i had a growth of abmormal blood vessels in my brain, i then made an appointment with my GP to have this explained to me. My GP drew a diagram of the viens and arteries inside my brain and described it as a tangle-ation of blood vessels that the blood was struggling to get through properly. I describe it to people as a cluster of tangled viens and arteries in my brain which is restricted my blood flow and that it could cause a stroke or a hemmorage.

I found out I had an AVM after it was removed. Like James, it was after I came out of the coma. I'd known what an AVM was because my aunt also had an AVM in her brain. I tell people it's a mass of malformed vessels, arteries and veins, that can occur anywhere in the body. Because of the high volume of blood associated with AVMs the biggest risk is a bleed.

As someone with an AVM in an extremity, it's a bit more confusing and frustrating. I will tell you what I say now,because when I was diagnosed, no one had any clue how to describe it, even to my parents.

Now,I describe it as a spider web with anuyerysms (I know I spelled that wrong sorry) in my leg. So, instead of my arteries going down in an orderly fashion to my capillaries, it kind of goes everywhere. It keeps people focused on the anatomy of it, makes it easier to explain.

The first time I heard AFL was after my initial bleed which left me briefly paralyzed. It was described a s the end of a braided rope that is weakened.

It was first explained by my mother and my sister a couple of weeks after I woke up from my coma. I dont remember their explanation as it still was too early for my brain to interpret things. But the term AVM stuck with me, and also the alternative treatments that my family explained to me (embolization, removal, and gamma knife).Once I left the in-patient rehabilitation hospital and went to an out-patient residence which was owned by the rehab center, and had finally access to a computer (about two months after my stroke). I did a little research on the topic on Google and came across several articles, one of which I remember was by Mayo Clinic (http://www.mayoclinic.org/arteriovenous-malformation/) and the information was fundamental in relieving my anxiety. Knowing anything, even what this AVM thing which I have is, is better than not knowing. At least for me.

I found out about my AVM after 6 months in the hospital due to two ruptures in my brain after I became cohesive. I'm slowly but surely recovering but i definitely scared my family.
Sorry for lack of a longer post, I really don't know what else to say.

When you first heard about your AVM, how did your doctor describe it to you and more importantly, how would you describe it to someone just diagnosed that says β€˜what’s an AVM?’”

You'll laugh or be in shock when you hear my answer. When my doctor told me I had a AVM she said you have a AVM and I don't know much about it Joe but I will say you can die from it. This is a neor doctor whose being doing this for 30+ years and she didn't know what a AVM was. All I can say is I learn more about from sites like this than I did from my own doctor.

To somebody who is just diagnosed with an AVM I would describe it as I describe my AVM and what happened to me to others: in the brain there are arteries, veins, and capillaries just like in any part of the body. Arteries take the oxygenated blood from the heart to the organs, capillaries drain the oxygen from the blood and in return bring back carbon dioxide and in the process relieve the blood flow pressure, and veins take the oxygen depleted blood back to the heart for reoxygenation, at a lower blood flow pressure. Because blood goes back to the heart through veins at a lower pressure, veins need not be as thick and strong as arteries. Imagine what would happen if no capillaries existed, it would be like two hoses connected together: one thick and the other one thin. At a water pressure designed for the thin hose it is OK, it can go through both hoses just fine. However, at a water pressure designed for the THICK hose, the thin hose would eventually break, causing a water leak. That is what an AVM is. It is an abnormality in the circulatory system whereby there are arteries connected directly to veins without capillaries in between to releve the pressure. In my case, it went undetected until it burst.

Please, if there is any information which is wrong in this post, do correct it. I would want to be corrected. This is an AVM as I understand. More specifically, this is a BRAIN avm as I understand.

My husband has an AVM and it was found after a bleed out in April 2011. The way it was explained to me was like this, most people have arteries, then capallaries, then veins. The blood in the arteries can and does moves very fast, like a 4 lane highway. Then the capallaries are smaller, like a one lane highway so the blood must slow down, just like traffic will funnel into one lane from 4 very slowly. But then when the blood goes into the veins they are like a 4 lane highway but can not take fast moving blood, so the capallaries have done their job by slowing the blood down to enter the veins. An AVM has no capallaries, there are arteries connected right to veins and then you have a rupture, or bleed. This is the way it was explained to me and this is the way I explain it to others.

With my AVM being right at the bottom on my right buttock my specialist described it to me as being sort of like a sponge. my veins above it were a tap and instead of when it was turned on and flowing through perfectly it got caught in this "sponge" so it kind of has a whole bunch of different pathways it could take before getting through the sponge and dripping out the bottom. although i still have fairly good blood flow down my leg i sometimes feel like it is slower and colder than my left. =]

My doctor said it is where arteries and veins form with no capillaries, so it is a roadblock in the blood "plumbing" system so to speak. Blood flows through the veins but has no way to get out, and at some point the veins get weak and burst.

My doc draws me a picture of spinal cord and explained to me what happened. He then draws a picture of human body in my case sheet and noted parts were muscle weakness and sensory loss. He told me he will try some medicines and if it is not working I have to undergo a surgery. After a day he called a radiologist who is experienced in this field and fixed an appointment for me and gave me a reference letter which I hope that help me to get my embolization done within 48 hrs.

An AVM is a broad spectrum diagnosis that refers to any unsusal formation of vessels. This may include veins, arteries, or small vessels in the body. They may form anywhere in the body at any point in a persons life. There is no know cause for this malformation, but in recent years, and with modern medicine it is a very treatable condition. If caught early, the outcome is often very positive. The malformation may be a narrowing or even blockage of vessels, or even a comes entanglement of vessels that inhibit circulation. This will result in either a lack or surplus of blood flow to a particular region. The most common, is an excessive flow of blood to an area. Signs and symptoms can be similar to that of a stroke or TIA, when occurring in the head or brain. Vision problems, dizziness, sever headaches commonly described as focal migraines or ice pick migraines. Localized swelling, redness or bruising that may pulsate or throb, and point tenderness.

Complications or side effects are dependent on several factors, mainly location and severity. An AVM in the foot may cause painful swelling, limited mobility or sensation distal to the malformation, difficulty or painful walking. Severe cases may cause tissue death or necrosis. The closer the AVM occurred to the central body, chest neck and head, the more dire the situation becomes. At a certain point, blood pressure will be greater that the walls of the vessels and rupture, causing the patient to bleed profusely.

The most sever complication being death due to Exsanguination, or total blood loss. Again the location of the AVM is crucial because of the high risk of secondary complications. Early detection and treatment are the key to survival. Treatment consist of Stopping blood flow prior to the rupture. In the 1980’s, jell foam and even metal coils we used to block the vessel. Today, ethanol and ambospheres are used, ethanol still beingost common. Ambosphere treatment yields the least side effects, however is not effective in large AVM’s. Ethanol is most effective but can result in severe side effects, most severely chemical burns and necrosis. It is also to have severe swelling of the treatment area is temporary. As the vessels are killed off, the body reroutes blood flow to other vessels to compensate. In time, new vessels will grow in place of those damaged by the AVM. Because a persons vescularisation changes in their life, multiple treatments and evaluations are often required, especially in kids and teens.

Developments are made routinely in the treatment and detection of AVM’s. A patient diagnosed today with an AVM has far better odds of not just survival, but of complete correction of the condition.

I was diagnosed with my AVM in 1986. The AVM, located off my left external carotid artery, caused a bleed to develop near my left upper molar. Taking the route of least resistance, the tooth was literally forced out and an arterial bleed ensued causing blood loss so severe I went into cardiac arrest. Again, this was in the 1980’s when no noddy knew what an AVM was, let alone how to treat it. It was assumed that I would not survive. When I did, I was told that I would have such major deficits that I would never live a normal life. Fortuanatly for me, this was in the pioneering days of AVM treatment. I am the longest living AVM patient, with such a severe case. I have zero deficits, or restrictions in activity. I am a Firefighter and Paramedic, have been for over 10 years with no problems. This is not a death centence, like it was twenty or even fifteen years ago.

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Sorry for the typing mistakes, using my iPhone since my computer is broken! Have a good day everyone!

My Doc told my that it's somewhat like having cancer. I may be able to keep it under control with procedures but I would probably always have it. My AVM is not one that can easily be surgically removed. I describe it like a mutant ball of blood vessels that grow off a main feeder. I show people my hand and say pretend that you aren't supposed to have fingers (I have my hand closed) then i let my fingers show and say then all of a sudden these show up and they shouldn't be there. The problem is how to get rid of them or at least keep them under control.

The first neurologist I saw didn't quite discribe what an AVM was he just said dont' worry about it, just leave it alone. I went online and looked up what an AVM was and then online found the best neurosurgen in my area, the AVM Team at Mass General Hospital. That team showed me a picture of my AVM, where it was in my brain and how it could be treated.
If I had to discribe an AVM to someone who was just diagnosed, I would send them what I found on my computer to understand: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001783/