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My Cavernous Malformations

By Bob Annecone, May 24, 2013

Upon seeking the cause of my double vision, Dr. Steinberg (Neurosurgeon at Stanford), diagnosed me with multiple cavernous malformations, the one in my brain stem causing the double vision.  He stated that this would eventually heal by itself, and he also recommended I see Ophthalmologist who specializes in sight problems caused by brain disorders.    
 
He also stated that the 3 cm hemorrhage (lesion) in my left temporal area should be removed because it was enlarging and moving toward the area that controls memory.  He also stated this lesion would likely be the cause of my epileptic seizures.  Ending the threat of a possible seizure, getting off 300 mg of Dilantin every night, and even improving my balance that deteriorated years ago, almost makes surgery sound like the right thing to do.
 
However, we're talking BRAIN SURGERY!  This is scary.  Although Dr. Steinberg said that on a scale of 1 to 10, 10 being the greatest risk, my surgery would be a 1 or 2.  OK, I'll do it. 
 
Due to cavernous malformations, my mother had epileptic seizures, and my son had surgery by Dr. Steinberg on his brain stem twice.  MRI's have shown that my Sister, my Aunt, and my cousin all have cavernous malformations.  It IS hereditary and so far, the grandchildren are fine.            
 
Best of luck to the Angioma Alliance; hopefully the need for surgery can some day be replaced by a pharmaceutical product.  
 
Bob Annecone