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AVM?
I just received an email from my Brother's Ex-Girlfriend. My Nephew, who just turned 2 in September, has been diagnosed with a very large AVM. I don't know too much about it, other than it's kind of a Brain Aneurysm. He's already had one confirmed hemmorhage, which was taken care of. But, they fear that if he has another, he won't survive.
I know we have a couple of Medical Students/Doctors (Not "Rose" types, but legit ones) on the boards. So, if you could help me with some information, I'd really appreciate it.
Thanks in advance.
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Re: AVM?
AV malformation is not something I normally deal with. I wasn't able to find much non-research oriented info on the web to pass on, but I will tell you what I know. AVM stands for arteriovenous malformation. It's a defect in which the artery shunts directly to the vein in a tangle of vessels instead of the natural progression of artery - capillary - vein. This article may help: http://www.emedicine.com/med/topic3469.htm Let me know if I can help you decipher any of it. Best wishes to your nephew.
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Re: AVM?
Large AVMs are generally bad news and need surgery to repair. Pretty complex surgery too..... we deal with a lot of post-op patients on our service.
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Re: AVM?
Thanks to you both. I just received another email from her. She assured me that Dylan is being seen by excellent Doctors and Specialists and that they're going to try to repair the problem. She says that the Doctors working his case are Doctors that people travel hundreds of miles to see. That's something in his favor then, right?
I'm just concerned because he's so little. One link that I had read earlier said that this type of thing is not normally diagnosed until it's too late (of course that means that the person had died).
boxingdoc.. If you could decipher it for me, I'd appreciate it. I don't know much in the way of medical lingo at all. It's all just confusing to me. So, is this something that he's had from birth? Or do these types of things just develop over time?
His Mom is going to keep me updated with everything, which is good. I've never even met him (They live in Maryland), so one day I hope to. I hope they can repair this, and that they can repair it before he has another hemmorhage.
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Re: AVM?
AVMs are a developmental defect, so yes, he has actually had this from before birth. I'm in Virginia. They have some really good hospitals in MD...where are they going for treatment? His prognosis is based on the size and location of his lesion. His risk of bleeding per year is 2%. His chance of death from each new bleed goes up incrementally. (10% for for the first, 13 % for the second, 20 % for each after) If they are able to remove it completely, it will not reoccur. He may end up with seizures or memory problems from it. Let me know what else I can tell you.
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Re: AVM?
Thanks again, boxingdoc.
Dylan is being seen by a Neurologist at Kennedy Krieger, she said. That Neurologist is also conferring with the top Neuro-Radiologist at Johns Hopkins. They're trying to decide the best course of action, and they know they have to do whatever it'll be quickly.
I wish I could remember the name of the Doctor that "cured" me of my Hydrocephalus. He was in Arizona, and when my third and last shunt failed in '97, he did a procedure called "Establish Brain Cavity", which made it possible for me to live shunt-free. I know it's different than what Dylan has, but maybe he could also help out. To me, he was a true miracle worker. I'll have to chat with my ex-Husband and get the name, because he remembers. It couldn't hurt, right?
I know you can't say for certain that what they'll do will be a success, but in your opinion, what kind of a chance does he have? He's just so little. Do you think his body is strong enough for all of this?
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Re: AVM?
I won't guess about survival rates with surgery. As far as brain function, I would guess that he would do better than an adult....kids' brains are still developing and very plastic and flexible in terms of healing and developing new pathways. He has youth on his brain's side. An example..during residency I took care of a four year old who had _half_ her brain removed to cure her seizures. She woke up walking, talking, normal as could be with no more seizures. As for your AZ surgeon....second opinions are always useful.
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Re: AVM?
Talk about totally bizarro timing...
The senator from South Dakota, Senator Johnson has it... that's why he had brain surgery.
http://www.msnbc.msn.com/id/16199440/
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Re: AVM?
From what I heard on the news today, the big problem with AVM is that the high-pressure arteries (from your heart) are connected directly to the low-pressure veins (back down to your heart) in a big tangle. The blood doesn't have to go through tiny capillaries, so there's nothing really to control the flow, and you have this high-pressure going directly into a pipe that isn't reinforced for that. It's like trying to use a normal garden hose as the outlet for a pressurizer -- it may hold up, but there's a much higher chance that it will break eventually.
Usual incidence is around 15 people in a million. 5 of those people are found because the AVM causes a bleed, 10 of those people are found when the doctors look at their head for some other reason and see it. There are probably more that are never found because it never causes a problem.
When it's found, they can either go in and take out the tangle via surgery, use catheters to close it without opening the skull up, use targetted radiation to induce the blood in the tangle to clot and block it, or do nothing (if it hasn't caused any problems yet and the risks of doing something are deemed too great). Since your nephew has already had a bleed, they'll want to do something about it.
The bad news is that surgery always carries a danger of death, and brain surgery is especially risky. The good news is that this is a well-characterized and fairly well-understood disorder. Also, your nephew is young and likely to bounce back much much faster than old geezer adults like us. Like boxingdoc said, the brains of young children are amazingly malleable and can recover from injuries that would leave most of us severely incapacitated.
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