was a proud moment in January of 2001 when Jodie graduated from computer
school as class valedictorian and was selected to give the speech. A year
earlier she had been so crippled by indescribable headache pain that she
had to be hospitalized for five days to try to find a treatment regimen
that would allow her to live her life. It has been a long road to where
she is now and she tells us her story so that someone else "will see
the light at the end of the tunnel."
Jodie grew up in a close knit Italian family in South Philadelphia, the
youngest of three sisters. The family moved to NJ when she was 19 years
old, and for the most part Jodie lived at home. She worked for various
firms as Administrative Assistant, and at the age of 34 she met her husband
Jim, at the gym where she worked out. Theirs was a whirlwind romance,
both seeming to know right away that they were meant for each other. They
were married after four months and their daughter Alexandra was born sixteen
months later, in August of 1994. For the first few years, Jodie enjoyed
being a full time Mom before returning to the workforce on a part time
About one year after Alexandra's birth, Jodie began to have extreme,
but sporadic, dizzy spells when she closed her eyes, particularly at bedtime.
These symptoms passed quickly so she did nothing to address them. On the
4' of July in 1997, Jodie experienced flu like symptoms along with painful
feet and swollen ankles. At this point she was given a likely diagnosis
of sarcoidosis, an inflammatory disease in which the body reacts to environmental
chemicals as if they were a disease. Subsequent chest x rays showed that
the enlarged lymph nodes had cleared and her symptoms faded. The fuzzy
feelings in her head remained, however, and doctors became concerned that
she may have neurosarcoidosis. She was also experiencing extreme fatigue,
forgetfulness and buzzing in her head. In March of 1999, an MRI with contrast
was done and she was given the diagnosis of a 2.5 X 3.0 cm acoustic neuroma.
The ENT wanted to schedule her for solo surgery immediately, but Jodie
was not comfortable with that option, and did not feel that he was being
candid with her about the number of AN surgeries he had done. When he
would not put her in touch with any of his former patients, she determined
to go elsewhere.
Jodie went online and began her research. One of the places she found
was the ANA/NJ website. She picked up the phone and Wilma Ruskin, chapter
President, answered the call. This began a very special and supportive
phone and online friendship that helped Jodie through many hard times.
Jodie also researched a number of surgical teams, but after meeting the
neurologist at Jefferson University Hospital in Philadelphia she knew
immediately that he was the one she wanted for her surgery. She prepared
her living will and wrote a letter for her daughter and one for her husband
and on June 24, 1999, went in for her surgery. The neurosurgeon and ENT
team used the suboccipital approach and completely removed her very sticky
tumor. When she awoke from surgery, she initially felt great. She had
complete facial palsy and could not close her left eye, but she was quickly
on her feet with a walker and was released from the hospital after six
Jodie's husband took off from work the first week to care for her and
was a fantastic support to her. Her mother came daily to help her for
the first month. She had her stitches out on July 7 and felt her only
problem was the persistent nausea, like morning sickness. When she saw
her neurologist three weeks post surgery for a final visit before he retired,
she complained of left temporal pain, but since all indications seemed
to be good, he felt this would pass. It did not. She went about having
physical and speech therapy at home but felt like she was in a haze all
the time. The pain in her head became excruciating, like a hot poker in
her brain radiating down her face. Three times her husband took her to
the emergency room after finding her crumpled in pain in a corner of their
home. Her doctor finally sent her to the Jefferson Headache Center where
she had additional MRIs, with and without contrast, and CT scans. In December,
1991, she was hospitalized for five days while they tried various non narcotic
medication regimens until they found what would provide relief from her
trigeminal neuralgia or cranialgia and which she could safely take for
the long haul. This was a new beginning for Jodie and she has not missed
a beat since that time. With relief from her pain, she has gone back to
work as a full time Manufacturing Planner, a job facilitated by her computer
training, and she is in the throes of redecorating their condo. She expresses
great love for, and pride in, their beautiful seven year old daughter,
and laments the fears and difficulties her illness has caused Alexandra.
What gave her great peace of mind throughout her ordeal was the knowledge
that Jim was the best possible father, and this illness made father and
daughter that much closer.
Jodie feels blessed by all the love and support she received from family
and friends and hopes that her story will give hope to others who suffer.
Throughout her anguish, she hung on to the thought that things would get
better, and that each day of pain was bringing her closer to a better
day. Although she continues to suffer from dry eye, minimal facial palsy,
is deaf in one ear, and needs medication to control her head pain, Jodie
is now fully able to enjoy her life and take pride in her accomplishments.
She is upbeat about the future and wants to share that with others.