Vascular Anomalies: This is the broad term to describe different conditions which involve abnormal blood vessels. The range covers birthmarks, hemangiomas, and malformations. The symptoms and treatments of the conditions are varied and can often be misdiagnosed. Vascular Malformations are rare, occurring in less than 1% of the population. The frequency with which a normal doctor would see these types of lesions is too low to provide them with the correct exposure and learning curve to appropriately treat a patient. Classification and terminology to describe the various conditions weren't even formally adopted until 1996! It's important that individuals diagnosed with a vascular malformation are seen by specialists who are dedicated to treating these conditions. Luckily there are quite a few interdisciplinary clinics that now exist to address the various manifestations of vascular anomalies. To name just a few- UCSF, Children's Hospital Boston, Arkansas Children's Hospital, and of course the Vascular Malformation Center at Swedish.
Arteriovenous Malformations: Arterial venous malformations are congenital lesions which consist of an arterial input and a venous outflow. Arteries carry oxygenated blood which is under considerably higher pressure than that which is seen in veins, which carry deoxygenated blood back to the heart. In an AVM, the normal intervening capillary bed which would otherwise be present is replaced by a tangled mass of abnormal vessels. The normal transition of pressurized oxygenated blood toward the veins does not occur. The veins, thereby, carry a pressurized and oxygenated blood away from the center, or nidus, of the AVM. These AVM's will often present with seizures or hemorrhage. A hemorrhage from an AVM may be life threatening. Hence, under appropriate circumstances, it is necessary to remove the arterial venous malformation either with surgery or with a combination of surgery and embolization. Another alternative available for the treatment of vascular malformation is also available at the CNI, stereotactic radiosurgery.
Historically, beginning in the late 1980's, the surgery on AVM's was facilitated by embolization using substances such as polyvinyl alcohol. As with brain tumors, this decreased the amount of bleeding seen at the time of surgery. Since AVM's carry a large amount of high pressure blood flow, the risk of blood loss can be prohibitive. Hence, many large lesions were never operated upon since the risk out weighed the risks of the natural history of the lesion. Although the combination of embolization and surgery advanced the treatment of this disease, some large lesions still remained untreated. Dr. Yakes, at CNI, has been the pioneer and torch bearer of a new type of treatment which was developed at CNI. In this method, he has infused the AVM with absolute ethyl alcohol. This has resulted in immediate sclerosis of the embolized vessels. In lesions in which he has been able to obtain a complete radiographic obliteration of the lesion, he has experienced at 69% cure rate. This type of treatment has not been duplicated elsewhere. Dr. Yakes has been invited to many destinations around the globe to educate others about this technique. Thus, a large number of patients have been spared the need to have open surgery.*
*original text taken from http://www.thecni.org/neuroradiology.htm
Info about MY Arteriovenous Malformation: In layman terms, I have a facial AVM which is primarily in my left jaw and cheek area, chin, and lower lip. It has grown over the years and become a much larger mass both in appearance and affected tissues. I have routinely experienced severe bleeding from inside my mouth, originating from my gums in between my teeth. More recently the AVM has caused skin deterioration on my lip and inside my mouth. Bleeding episodes have also occurred from the "wounds" that this necrosis has caused. I experience severe pain in my chin and lip ranging from what I would call long lasting, dull and throbbing; to sharp, intense, and quick. Embolizations have typically helped to alleviate some of the pain.
From a more "medical" perspective I have an extensive facial arteriovenous malformation, large mass lesions in the submandibular area and left facial area, with gigantic draining veins measuring over 3cm and 4 cm in diameter, severe pain syndrome, and pulsatile tinnitus. The following describes the involvement as seen from my first Arteriograms in Denver, Oct 07-
What causes an AVM?: Nothing that can be controlled! You are born with this condition. It is not generally something that is inherited or passed on through your genes. It is basically a "glitch in the system" in the development while an individual is still in the womb. During the early stages of embryonic development, before the baby has any real recognizable "parts," it is made up of a bunch of primitive blood vessels. As development continues the real vascular system grows and these early blood vessels are no longer needed. They should just be reabsorbed and go away. But when they don't, these early and "basic" versions of blood vessels end up as the problematic, capillary-less tangle. And Voila! You have an AVM...
Links detailing info about AVM's and other vascular anomalies
http://www.novanews.org/documents/2007ClassificationChart_000.pdf Chart of classifications of vascular anomalies
http://www.birthmarks.us/avm.htm Description of AVM
http://www.novanews.org/VascularMalformations.htm Description of Vascular Malformations
http://www.birthmarks.org/ Arkansas Vascular Clinic with info about the different anomalies
http://www.emedicine.com/radio/TOPIC896.HTM Emedicine overview of Vascular anomalies
http://www.bvac.ucsf.edu/information/AVM.aspx UCSF Vascular Center AVM description
http://blog.healthtalk.com/zimney/arteriovenous-malformations-tangle-of-blood-vessels/ Dr. Z's medical report- Senator Tim Johnson
Forums
http://www.avmsurvivors.org/forum AVM Survivors Network Forum
http://www.birthmark.org Vascular Birthmark Foundation
http://www.novanews.org NOVA Forum