My CCM Story


From:"Patti Gilstrap" Pagilstr@hotmail.com
Sent: August 14, 2003

Fifteen years ago I had my first brain hemorrhage. The hemorrhage, or bleed, presented itself with a first-time generalized seizure. After many tests and weeks later, I was diagnosed with multiple cavernous malformations. A CCM? What is that?

With encouragement from my neurologist, I sought treatment at UCSF, San Francisco, CA, a world-renowned medical center. My surgery, performed by Dr. Charles B. Wilson (now retired), was successful and the cavernous malformation was removed.

At the time of surgery, I was unaware that the remaining CCM's in my brain could "grow," or fill up with blood and hemorrhage.

Fourteen years after my first surgery, I had a second hemorrhage. This 2nd bleed was opposite, almost a mirror image from where the first hemorrhage occurred. And as 14 years before, I presented with a seizure.

After much struggle with my former local neurological community in getting an MRI, the MRI was performed and it confirmed I had had a bleed.

I sought neurosurgical care at world-renowned Stanford University Medical Center, Stanford, CA. Once again, the CCM was successfully removed, this time by Dr. Gary K. Steinberg. In 14 years, brain surgery techniques, as well as anesthesia have changed for the better. And instead of having my entire head shaved as was 14 years before, a small patch of hair was shaved from my head. The improved techniques made recovery go smoother than before, and month's following surgery it was easy to cover the incision with new growth hair.

Since this 2nd hemorrhage, I have a cognitive disorder in which is especially noticeable when fatigued or overwhelmed, in which I cannot think clearly and to answer a simple question is impossible - it's comparable to looking at a blank wall for the answer. I also experience mental fatigue daily and require a nap. If rest is delayed I feel "neurologically ill," very similar to how I felt after my hemorrhage.

Within this year, I have also developed an unsteady "stumbling" walk of which is unexplainable to my doctors, as no apparent changes have occurred on MRI, though this unsteadiness is most likely CCM related.

Recently my former employer deemed me "disabled" to the type of work I have done throughout most of my working career. So, I am in a transitional period of my life and see it before me as a blank sheet of watercolor paper or canvas - something new, bright and wonderful to create, but unsure where and exactly how to begin.

Since many years ago I was a part of an AVM support organization and shortly after my second surgery I was drawn back into wanting to offer/receive information and support to fellow patients. My dear husband was and is very supportive of me, and has built our website, "AVM Patti's Brain," @ www.clix.to/avmpatti. The website is an ongoing "project" - one of which I hope will "color my canvas" with patient support and helpful information.

Because so much about AVM's and CCM's remain a mystery to the neurological community, I would encourage patients to participate in studies, such as the CCM study headed by Dr. Daniele Rigamonti of John Hopkins University School of Medicine Research. Likewise, I would continue to ask of the neurosurgical community to please study "us" years after our treatments, to know beyond MRI studies of how we are both physically and emotionally.

Patti Gilstrap
White City, Oregon