Patti G.


Cavernous Malformations & Central Pain Syndrome

Between 1987 - 2010, I had four brain hemorrhages requiring surgical resections of multiple cavernous malformations, CMs, a vascular malformation also known as cavernous angiomas or cavernomas.

Having innumerable CMs throughout my brain and with the nature for CMs to bleed, or seep blood, I will always be at risk for hemorrhagic strokes. While presently there is no cure for CMs and surgery is the only treatment, I do my best to live a healthy lifestyle, exercise within my limits and have found the necessity of being my own health advocate.

Since a thalamic (deep brain) CM bleed and surgery in 2010, my entire left-side is numb, along with developing central pain syndrome, CPS, also known as post-stroke pain or thalamic pain. CPS symptoms include a debilitating, constant and electrifying burning, stabbing, throbbing pain, pins and needles along with other painful sensations. Imagine if you will, placing part of your body into scalding water or oil while carrying on through your day. This is what I experience in my every waking moment 24/7.

There is no cure for CPS and primary therapies include: anticonvulsants, antidepressants and often antispasmodics and muscle relaxants. Relief varies for individuals, yet in my case I've found little relief. The strongest pain killers are ineffective for CPS.

Since my thalamic bleed and surgery, my lifestyle has changed dramatically, as has my husband's. Activities I once enjoyed or activities of necessity, such as: car rides, walking, baking, holding hands, petting our cats, grasping a Kleenex, turning the page of a book, etc. literally adds to my existing excruciating pain, much like razors to tender skin, or sandpaper to the worst imaginable sunburn.

While I walk with a cane inside my home, a wheelchair or mobility scooter is required in public, since walking is also excruciatingly painful.

Coping is moment-by-moment and holding onto the good and simple things in life, as well as keeping a sense of humor are my best ways of coping.

Awareness and research is the beginning of my hope for eventual cures.


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