avmsurvivors-blog

[avmsurvivors-blog]

I wanted to say I am overwhelmed by the support given to me. It has helped me beyond words. My son Kevin signed up to be an organ donor a couple of years ago. This was not something he did lightly, as he spoke to my wife and I about it in detail and decided he wanted to do it. I spoke with the hospital yesterday and Kevin's gifts will benefit over 100 different people, some waiting at hospitals around the country for a miracle, which my son has now given them. There are heroes in all aspects of life. Some heroes rush into burning buildings, or jump to a raging ocean. There are heroes in our military who risk their lives everyday. Then there are heroes who simply make a decision to give... My son Kevin is a true hero.

I am so struck by this family and Kevin's amazing strength.  And yes- I do believe they are all true heroes.

The world is blessed to have people like them.

[avmsurvivors-blog]

Arteriovenous Malformation (TAAF)

An arteriovenous malformation (AVM) is a complex tangle of abnormal arteries and veins linked by one or more direct connections called fistulas or shuts. 

This tangle of abnormal arteries and veins is referred to as a nidus. Normally, as the high-pressure arterial blood is pumped through a capillary bed there is a gradual decrease in blood pressure before reaching the venous system. With an AVM, the capillary bed is absent and the high-pressure arterial blood bypasses normal brain tissue and is pumped directly into the normally low-pressure venous system. 

 There is typically high blood flow through the nidus of the AVM, but it is not known whether the flow is a cause or effect of the abnormal blood vessels, or both. One thought is that the high-pressure blood from the arterial system gravitates towards the path of least resistance. Another thought is that the AVM itself recruits blood vessels. 

Ultimately, the arterial blood rushes through the AVM, instead of working through available capillary beds, which feed the surrounding brain tissue, increasing blood flow through the nidus. This re-direction of the arterial blood away from the brain tissue and through the AVM is referred to as shunting.

Over time, the high blood flow and shunting of high-pressure arterial blood through the AVM causes the feeder arteries and veins making up the AVM to dilate (or expand). This dilation weakens veins making them susceptible to hemorrhage; feeder arteries become susceptible to aneurysms, a weakened spot in the blood vessel wall that expands and can eventually hemorrhage. A hemorrhage in the brain is a type of stroke in which a blood vessel ruptures and bleeds into the surrounding brain. For more information on strokes, please visit the American Stroke Association at www.strokeassociation.org.

There is a 10-15 percent risk of death, and a 20-30 percent chance of permanent brain damage, related to each bleed. Each time blood leaks into the brain, normal brain tissue is damaged. This results in loss of normal function, which may be temporary or permanent. Some possible symptoms include arm or leg weakness/paralysis, or difficulty with speech, vision, or memory. The amount of brain damage depends upon how much blood has leaked from the AVM (Higashida). 

Smaller AVMs present with hemorrhage more often than large ones. In addition, the size of the hematoma (a localized swelling filled with blood resulting from a break in a blood vessel) is larger from the small AVM, compared with the medium or large AVM. There appears to be no difference in the frequency of hemorrhage between large and medium AVMs. However, whether size of the AVM is a true risk factor is unclear. 

The structure of the abnormal vessels varies between what is usually found in arteries and that of veins. The tissue in and around the abnormal vessels is usually a kind of scar or fibrotic tissue (gliotic), but sometimes brain tissue is also found in some regions of the AVM.

AVMS arise in the brain, spine, lungs, kidneys, and skin. Brain AVMs are the most common and can occur anywhere in the brain. When an AVM occurs in the dura mater of the brain (the outermost lining of the brain), this is called a dural arteriovenous fistula (DAVF).

AVMs are thought to be congenital (that is, present at birth), arising from developmental derangements at the embryonic stage of vessel formation, at the fetal stage. However, this has never been clearly established and they may arise after birth. AVMs are usually single, except when associated with hereditary hemorrhagic telangiectasia (HHT). For more information on causes of AVMs, please visit the Causes of AVMs section.

[avmsurvivors-blog]

Dedicated to bettering the lives, support networks, and medical care of those affected by aneurysm and other types of vascular malformation of the brain.

[avmsurvivors-blog]

   An Arterio-Venous Malformation, or AVM, is an abnormal collection of blood vessels. Normally, oxygenated blood is pumped by the heart through branching tubes called arteries to the brain, where it enters a fine network of tiny vessels called capillaries. It is in these capillary beds where the blood nourishes the tissues. The “used” (deoxygenated) blood then passes back to the heart through branching thin walled tubes called veins. Arterial-Venous Malformations are areas that lack the tiny capillaries. The location of the connection between the artery and the vein is called the shunt. The area of tissue is called a nidus of the AVM. An AVM can be thought of as a “Short Circuit” where the blood does not go to the tissues but is pumped through the shunt and back to the heart without ever giving nutrients to the tissues.

[avmsurvivors-blog]

Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth.  Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body.  Most people with neurological AVMs experience few, if any, significant symptoms.  The malformations tend to be discovered only incidentally, usually either at autopsy or during treatment for an unrelated disorder. But for about 12 percent of the affected population (about 36,000 of the estimated 300,000 Americans with AVMs), these abnormalities cause symptoms that vary greatly in severity.

[avmsurvivors-blog]

#AVMSurvivors @ Tumblr is an account dedicated to sharing news, information, stories, and support for people whose lives have been impacted by the rare disease, Arteriovenous Malformation.  

(It is not directly affiliated with any of the moderators or administrators of Ben's Friends or AVMSurvivors Network, but was made as a way to spread the community onto other platforms.  I saw that there were Tumblr and Twitter accounts for various other groups, but not for the Arteriovenous Malformation community, so I decided to create one.)

Please follow and join in on the discussion.  Submissions are welcome, with stories, links to news, photographs, etc.  

There is also a Twitter account @AVMSurvivors.

Please use the tag #AVMSurvivors for both Twitter and Tumblr to share information and stories!