Patti's Ongoing Journey
by Patti G.
(White City, OR, USA)
My journey with cavernous malformations, CM's throughout my brain began in 1987 when I presented with a first-time generalized seizure secondary to a brain hemorrhage from a CM.
Cavernous malformations also known as cavernous angiomas, are malformed thin-walled blood vessels and resemble a raspberry. 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, which affected S. Dakota Senator Tim Johnson and Jill Bolte-Taylor, Neuroanatomist and author, “My Stroke of Insight.” While different in structure, CM's and AVM's have a tendency to bleed, or hemorrhage. Once these lesions bleed, they will most likely bleed again.
Between 1987 and 2010 I have had 4 bleeds requiring surgery in various locations of my brain. My recent surgery of 3/9/10 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 throughout my recovery, including 2 weeks in rehab relearning to walk with a cane and coping with numbness and unusual sensations
on my left side. All things considered, I am doing quite well, though recovery is an ongoing process requiring patience with myself and self reminders of accomplishments I have made in regaining the abilities to perform 'simple tasks' that are taken for granted when healthy and able bodied.
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 @ 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 which are considered familial, 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 cerebrovascular disorders to the general public and many medical communities. As a 51 yr. old survivor of this often devastating and disabling disorder, I can only hope for more research, awareness and future treatment options, and try to live my life to the fullest. Doing the best I can within my limits one day at a time with my loving, supportive husband by my side.