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A cavernous malformation is a vascular abnormality characterized by clusters of blood vessels which are unusually enlarged, creating caverns within the cluster through which blood moves very sluggishly. Cavernous malformations or cavernomas as they are also known can be found anywhere in the body, but they are a special cause for concern in the brain, and when people refer to a cavernous malformation, they are usually talking about a formation in the brain or spinal cord. People may also use the terms “cavernous angioma” or “cavernous hemangioma” to refer to this type of vascular abnormality.
The cause for this condition appears to be genetic, with some people simply being born with a predisposition for developing cavernous malformations. In other cases, it may be related to disease processes or trauma. Often, these malformations are diagnosed when a medical imaging study of the head or spine is performed for an unrelated reason and a doctor notes the appearance of a cavernous malformation. Others are diagnosed in response to specific symptoms which may make a doctor suspicious that a neurological problem is occurring.
One of the classic symptoms is headache. Patients can also experience seizures and neurological issues such as slurred speech, numbness and tingling in the extremities, or blurred vision. One of the more serious complications of a cavernous malformation is bleeding, which can cause damage to the brain. Bleeding is relatively rare, but it can happen, making certain formations a cause of concern among some medical practitioners.
When a patient is diagnosed with a cavernous malformation, there are several options for treatment. Treatment options depend on the location and size of the malformation, along with the patient's experiences with symptoms. In some cases, a doctor may simply recommend that the growth be left alone, and monitored for any signs of problematic developments. In other instances, surgery can be performed to correct the vascular deformity. Surgery carries some risks, so a doctor usually only recommends it when he or she thinks that surgery would be a good idea for a patient.
Developing a cavernous malformation is quite rare. Patients with mild malformations may be living quite contentedly with them without even being aware of it, and even after diagnosis, some patients require no additional treatment beyond periodic follow-up to confirm that the malformation isn't growing or bleeding. For patients with more severe malformations, there are a number of surgical options which can be discussed with a neurosurgeon.
My name is Patti and I have multiple cavernous malformations, CM's throughout my brain.
Cavernous malformations also known as cavernous angiomas, are malformed thin-walled blood vessels which resemble a raspberry. Multiple CM's such as mine are familial.
While estimates vary, it is estimated 1 out of every 100 – 300 people will present with cavernous malformations, with symptoms of seizures, stroke-like symptoms, headaches and hemorrhages, often referred to as bleeds.
CM's are in the same vascular malformation “family” as the arteriovenous malformation, AVM. While different in structure, both CM's and AVM's have a tendency to bleed, or hemorrhage. Once either lesions bleed, they are most likely to bleed again.
Between 1987 and 2010 I have had four bleeds requiring surgery in
various locations of my brain. My recent surgery in March 2010 was in my right thalamus (on top of brainstem).
Because of the deep, eloquent location, involvement and bleeding of this thalamic CM, I have met greater challenges in my recovery, including two weeks in rehab relearning to walk with a cane and coping with unusual sensations on my left side. All things considered, I am doing quite well.
Neurosurgeons specializing in the treatment of CM's and AVM's are in a subspecialty within the specialty of neurosurgery and it is not uncommon for patients to go outside their geographical area as I have done for treatment at Stanford University Medical Center, Stanford, CA.
Presently, surgery is the only treatment for cavernous malformations.
Because I have multiple CM's remaining throughout my brain I will always be at risk for another bleed and require annual MRI's to be reviewed by my doctors.
CM's are among the 'unknown' disorders to the general public and many medical communities. As a 51 year old survivor of this often devastating disorder, I can only hope for more research, awareness and treatment options, and try to live my life to the fullest. Doing the best I can within my limits one day at a time.
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