Meet Chiari Warrior – Becca
September is Chiari Awareness month. Each day, I am going to share one person’s journey…in their own words. Chiari malformation is a condition where your brain herniates below the base of your skull, compressing the brain stem and spine. The symptoms are unbearable, at best, and there is no cure…
Meet Becca (journey told by her mom)...
My beautiful daughter Becca (who will turn 17 on Sept 24th)
was 11 years old when she started complaining of headaches. After dealing
with an osteoid osteoma (benign tumor in her elbow) she started having
headaches. Her PCP sent us to a neurologist here in Maine her tried
convincening me it was cluster headaches. After approximatley 4 months
still having headaches I called her PCP and said I wanted to go elsewhere.
Since the doctors in Boston were so wonderful treating her tumor I wanted
to go back to Boston Childrens. Dr. Lebel saw her did the normal
evaluation leaving me to think (oh God please don't let this be another
appointment of nonsense, to my relief, she scheduled an MRI for that
afternoon. After 6 months of headaches where I was giving my 11 year old
straight codeine so she could sleep I may get some answers.
After the MRI this beautiful human being placed my tiny child on her lap to
look at the scan. The scan showed a growth at the bottom of her brain.
She referred us to the neurology surgeon at Children Hospital. We met with
Dr. Edward Smith who greeted my child like she was his own. He sat with
her asking about her headaches and where does it hurt. She is so intune
with her body that she pointed to the exact spot of her chiari. At this
point we were told her chiari was going towards her brainstem and her c2
was also going towards her brainstem on the other side fearing that when
removing her C1 which is necessary to get to the chiari her c2 would tip
and touch her brainstem. This meant we had to wait an additional 6 months
to correct the problem to make sure the c2 was tipped in a stable
position. During this time my child did weekly sessions of accupuncture,
tried massage therapy, chinese herbal medicines and western medicines by
the time we went back to Boston my 11 year old was taking 14 pills per
day. As we celebrated her 12th birthday we prayed that she could have a
day without headaches.
During this time she would also wake up in the morning stating her foot
hurt so bad she could not walk. This would eventually lead us to Dr.
Lucien Oullette, DO who would send her to PT. We made fast friends with
Jared Buzzell at OA Centers for Ortheopadics. He was the person to find
the "recipe" that would jump start her nerves and make the pain go away
this would go from leg o leg never knowing why.
Just before Christmas 2013 now 12 years old I took my daughter back to Dr.
Smith to see what he thought now 6 months later. My beautiful little girl
walked in and when he called her she high fived him bounced down the
hallway with her ponytail swining. Inside his office he asked how she was
doing she said "great and you"? He smiled and hopefully asked "so your
headaches are gone?" She said no and continued to report on the pain scale
they were at a 10 all of the time. He asked how she felt about brain
surgery, she said great I'm ready! On January 4, 2013 I took my beautiful
girl to the surgery department for a decompression brain surgery. After
three long hours in surgery she was brought to recovery, her daddy big
sister and I were all waiting for her to wake up. I spent a week at
childrens hospital with her not knowing yet if the surgery was successful.
After having her home for a week my beautiful baby girl went back to
I would be remiss if I didn't include that she never missed being on the
honor roll, she never let anyone know she was in significant pain and she
kept a smile on her beautiful face showing the world her adorable dimple.
When Dr. Smith was explaining the surgery to her he asked if she was scared
her reply was "no". He asked if she was worried she said again "no" he
then asked why are you not nervous she stated "Because God gave me my mommy and she wont let anything bad happen". He and I both just looked at her in awe.