Monday, September 5, 2011

The Vein of Galen Malformation

The vein of Galen malformation is a special case of arteriovenous malformation. The vein of Galen is a large deep vein at the base of the brain. As in other AVMs, the capillaries, which normally slow blood flow and allow oxygen exchange with the surrounding tissues, are missing. Blood flows directly from arteries into veins without slowing down and without releasing its load of oxygen and nutrients.In vein of Galen malformations, this rush of blood goes almost directly to the heart and can rapidly overwhelm it, leading to congestive heart failure. Sometimes the defect will be recognized on an ultrasound before birth, but most often it is seen in infants who experience rapid heart failure. In less severe cases, a child may develop hydrocephalus because the enlarged malformation blocks the normal flow or absorption of cerebrospinal fluid.

The most effective treatment for the malformation has been embolization rather than surgery. By feeding a narrow catheter through the arteries that lead to the defect, surgeons can introduce materials that block the blood flow through the malformation and form a clot that closes it off. The materials used can vary from a kind of fast-acting glue to small particles or coils. The procedure is often not 100% successful on the first try. By gradually closing off remaining areas of blood flow in subsequent efforts, surgeons can usually shutdown the pathway. After successful embolization, patients can go on to full and active lives.

Memphis was Born with The Vein of Galen Malformation. So far she is still doing great. In fact, if you didn't "know" anything was wrong you'd never be able to tell from the outside or effects at this point because she looks and acts completely normal.

Since this is SO RARE Dr's. can often go their entire careers without ever coming across a case. That's great that this doesn't happen often of course. However.. NOT GOOD.. as far as finding a Dr. Who has ALLOT OF EXPERIENCE with The Vein of Galen Malformation. After all.. I don't think most parents would want a Dr. who has treated this only few times to never to do the procedure on their child.

Memphis has a appt. with her Nero surgeon tomorrow. We have a few more questions for him, but the main one would be... HOW MUCH EXPERIENCE does he have with THIS? Yes.. we should have asked this before we left the hospital, but we were taking in a ton of info. Since then we have tried to research this condition. There is a Dr. in New York who specializes in The Vein of Galen and does Embolization procedures routinely. So our future could hold a trip to New York. After her appt. tomorrow we will definitely be starting to make some big decisions.

Please continue to Pray for a complete Healing for Memphis, our family during the wait, and for wisdom as we start to make some big decisions.

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