n 2010, at age 50, I developed central pain syndrome
(CPS) as a result of surgical resection of a persistent
bleeding cavernous malformation in my thalamus.
Initial post-surgical pins-and-needle symptoms soon
developed into a constant stabbing, searing, throbbing,
Walking is excruciating
from knee and foot pain, so
I use a cane in my home or
yard, and a wheelchair or
mobility scooter in public.
I suffered a minor knee
injury years ago, which
had become a nuisance
with occasional pain.
Since developing CPS,
my damaged thalamus
relays garbled, incorrect
signals, telling my brain the
minor knee injury feels like
bone on bone, yet there is
nothing wrong with it and
cortisone injections do not provide relief. Unrelated to my
knee pain, my foot hurts as if walking on marbles, making
it difficult to find tolerable footwear. Mostly shoes without
arches such as cloth tennis shoes or mesh shoes are the
most doable, at least for a while. The only slippers I can wear
comfortably are sock-slippers.
Usual CPS “treatments” of anticonvulsants,
antispasmodics and pain medications have been ineffective.
Acupuncture brought no relief, and renowned pain specialists
have nothing to offer me.
Living in constant, intractable pain is not only disabling,
frustrating and isolating, it is an invisible disease in itself,
affecting the lives of both the patient and their loved ones.
Something so simple as going for a walk around the block
is no longer possible because of my pain and neurologic
deficits of double-vision and balance issues. I once used to
enjoy Sunday drives and outings with my spouse, but now
it hurts too much to leave the comfort zone of home for any
length of time, so there are fewer outings and my world has
become smaller. The unavoidable limitations are very frustrating
and I miss the old me! The yard and flowers I used to take
pleasure in are something I now have to do in baby-steps and
moderation, knowing it’s really going to hurt even hours later,
yet I enjoy the outdoors and rewards of its beauty. Forcing
myself to participate in activities can sometimes help get
me beyond the agonies to where I can enjoy the moment,
especially when extending my energy in moderation. If I push
too far, fatigue and misery will be the end result.
Distraction is my primary way of coping. Reading,
coloring in adult coloring books (many to choose
from!), interactive computer games, activities and/or
correspondence with people I know helps somewhat with
isolation, providing more of a connection with the outside
world. And as mundane as it may be, home chores within
limits can serve as a productive distraction.
When pain is beyond distractions, I have no other option
but to lie down, put a heating pad on my knee, turn on the
overhead heat lamp (winter time), get as comfortable as
possible and rest. With any brain injury, fatigue is a normal
symptom and naps, rest and quiet time are crucial. Without
enough rest, fatigue becomes stress that increases my
pain and cognitive deficits and I just can’t function properly.
Nighttime sleep is equally essential, and I am able to get four to
six hours of good quality sleep using mild medications.
For myself, among the stressors and frustrations of having
a complex disease is finding a neurologist or healthcare
professional willing and/or interested enough to go above and
beyond in gathering patient information, researching any new
treatment options to improve quality of life, and to work with
the patient as part of a team.
As a neurology patient of many years, being my own
advocate has proven a necessity. I work very hard to gain
knowledge of my condition(s) and to reach out to experts of
leading medical teaching universities when necessary. Seeking
second opinions is also a worthwhile option.
I feel public awareness is an essential beginning for
gaining the interest and support from research and medical
communities. Until then, central pain syndrome will remain an
often overlooked topic, treatments will remain the same and
patients like myself will continue to suffer.
PATTI GILSTRAP | Cavernous Malformation Patient
Patti Gilstrap has been a cavernous malformation (CM) patient
since 1987 and has had four hemorrhages requiring surgeries.
She has multiple CMs throughout her brain.
CPS — A PATIENT’S PERSPECTIVE
CPS Survivor Patti Gilstrap shares
a book with her friend Harper