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Old 08-20-2005, 03:06 PM
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Default Need some concise AVM help

Last year I fell and hit my head so hard it knocked me out and caused a brief but passing memory loss. They did a non-contrast scan and noted an AVM in the frontal part of my brain so I was sent back for a contrast scan and the same was noted again. I was told that this AVM was unrelated to my injury and that it meant absolutely nothing and had probably been there since I was born. How would they know that? This past year I have had a barrage of problems including severe recurrent vertigo, fogginess, short term memory problems, extreme fatigue and water weight gain and now a headache that will not go away. Because I've spent this last year dealing with a completely unrelated injury which has really sapped me, I've been chalking it all up to that and the fact that I'm diabetic and not well controlled. But no smart choices or trips to various doctors are helping me and I'm getting worse. I'm starting to wonder if this AVM has something to do with things. I've looked up the definition of AVM and I'm understanding it, but it's not really in conjunction with what I'm reading about people who have them AVM. IN short they seem much more serious than the actual definition wold lead me to believe. So I guess I'm not really understanding exactly what an AVM really is, how serious it is or if it could even account for some of the things that have been going on with me over the past year. Is this something I should be concerened about? If so, why was it so completely dismissed at the ER when I was told about it? I could really use some solid advice. Thanks.
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Old 08-20-2005, 03:32 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Join Date: Feb 2005
Location: St Marys GA
Posts: 130
Default Re: Need some concise AVM help

Hi Cydnie,

I don't know all that much about AVMs in the Brain, becuase I was diagnosed with one in the arm, but turns out it's a VM. Anyway I see a doctor in Colorado who is fantastic he is on the physcian list, his name is Dr.Yakes. I am not sure were you are located but I would recommend getting your MR and if you had and Angio, I would try and get those on CD-Rom and send them out to Dr.Yakes to get his opinon. I know they have ways to treat AVMs using coils.
That AVM more than not has been since birth, but I would check the find a physcian page and find a specialist close to you. Hopefully someone with more experience with AVMs in the brain will respond. I know there is one mom from MN who I am sure will respond.

Hope that helps

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Old 08-21-2005, 09:15 PM
juliemn juliemn is offline
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Join Date: Sep 2004
Posts: 95
Default Re: Need some concise AVM help

Hi Cydnie,

I'd be that mom in MN.* ;D

The ER was right, you were most likely born with the AVM, most of them are congenital.* In fact, finding the brain AVM the way you did is very common.* The are often found by accident.* The treatment approach can be extremely different depending on which doctor you see, and there are many factors involved with AVM of's the brain...i.e. the size of the AVM, the specific location and it's accessibility, your age, whether or not it is creating symptoms, etc..* I can't say I agree with a doctor who simply told you not to worry about it, if nothing else it should be followed and monitored for changes.* If you are having neurological symptoms...I would definitely seek an opinion from a neurosurgeon or an interventional neuroradiologist.* These symptoms can be a result of bleeding, or an indication that the AVM is creating pressure or irritation somewhere.*

Many doctors familiar with AVM's of the brain will take the conservative approach of monitoring.* Invasive procedures in the brain have their own set of complications that can be far worse than having the AVM itself.* There is always a slight chance of rupture or bleeding, but then again, a doctor familiar with AVM's can assess the malformation to see if it falls into the category of likely to bleed.*

If a doctor thinks intervention is needed at some point, there are a couple of different options depending on several factors such as what area of the brain it is in, and how large it is.* Gamma knife radiation is often used for inoperable AVM's.* Embolization is also used to manage (but not remove or eradicate) AVM's.* Embolization is also used as a predecessor to surgery in large AVM's to help manage the blood flow during the operation.* Surgically removing the AVM is an option also, and is the only way to completely remove it.* If surgically removed, the area of the AVM called the nidus has to be completely removed or the AVM may grow back aggressively.* If this is the treatment suggested, make sure you have the right doctor.

My son Ben has a facial AVM, and 2 AVF's (similar malformation) in his brain.* In our case, the fact that the malformations in the brain were AVF's, meant that we could actually treat the larger one with just coil embolization.* There are several links to articles about AVM's on Ben's website, and as soon I get around to uploading , I've added a few more links about AVM's and AVF's:

I guess if I were in your situation, I'd start by consulting a good neurosurgeon.
Oh...and welcome!

Ben's Page
Julie H
Mom to Ben (multiple AVM's, PWS, SWS)
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