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Northeast
Center for Special Care is pleased to feature:
Erienne Romaine - The Scenic Route
www.erienneromaine.com
Erienne Romaine is a 14 year old who has a lot going
on in her young life. Surrounded by music (her
father Paul is a jazz drummer and music instructor) she began singing
Sinatra songs at age 2 and demonstrated remarkable
musical talent. At age 10 she was accepted into
the Denver School of the Arts. In 2002 she
started playing piano at the Colorado Conservatory for
the Jazz Arts and started taking jazz vocal lessons.
At age 12 she landed her first singing gig.
Since then she has been an accomplished performer and
has appeared in a number of venues.
In July of 2005 Erienne collapsed and had a seizure
due to hemorrhaging in her brain during a rehearsal. She was rushed to a hospital
where after a CT scan she was diagnosed as having Arteriovenous
Malformation or AVM as it is commonly
known.
Arteriovenous malformations are masses of abnormal
blood vessels which grow in the brain. The
condition is congenital but usually not detected until
the ages of 20-50 and tend to be discovered only
incidentally. The greatest potential danger posed by AVM's is hemorrhage.
Most people with neurological AVM's experience
few, if any, significant symptoms. When an
individual experiences symptoms they are headache
and/or seizures. The greatest potential danger
posed by AVM's is hemorrhage.
In Erienne's case the malformed veins are at eye
level, dangerously close to the portion of the brain
that controls motor functions.
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Erienne
Romaine's website includes regular updates about her
treatment and her personal blog. |
Erienne's
website contains information about her condition and
the course of treatment. She has undergone an
alternative type of treatment called
embolization. You can read about this process
starting with her blog page in October 2005 and read
updates written by Erienne herself. Erienne is
scheduled for a final embolization on March 6, 2006
and then surgery on March 7.
We choose to highlight www.erienneromaine.com
because it's a wonderful resource for people who may
be going through a similar event and especially for
family members who are assisting a child or a loved
one through neurosurgery or a brain injury.
Erienne writes openly about the limitations her
condition has placed on her as well as the
dangers. She relates plainly her experiences and how
her condition is affecting her. Erienne writes with great
courage and believe it or not with humor. "I'm having a craniotomy for my
birthday!" Erienne announces to a local reporter
for instance. Her writings are peppered with
humorous observations amid the seriousness of her
story. The greatest value a visitor takes away
from this site is the strong and positive
determination of its author.
Reading her website and understanding what she has been
through and what she is facing reinforces that
people have the skills and abilities to tackle any
adversity. Like many of the personal websites we
link to, where people talk about their stories you
come away with great hope. Erienne gives us all hope, those of us who haven't experience a
neurological event and those that have. And that
is a great gift.
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Erienne's
CD is featured on her website and visitors can
hear soundclips.
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Besides
her personal blog you can link to a number of
newspaper articles and stories from area television
stations (including streaming video) that have followed
her progress. There is a page of photos as
well.
Visitors can purchase Erienne's CD "Erienne
Romaine The Scenic Route," through her
site. Proceeds go to cover her medical
expenses. You can also listen to sound clips and
hear for yourself what an extraordinarily talented
vocalist Erienne is.
We felt it was important to feature
www.erienneromaine.com
as our website of the month for March 2006. We
encourage you to visit this site, read Erienne's
writings and visit regularly to learn about her
progress with her upcoming surgery and recovery in
March.
If you are going through something like this or
supporting a family member or friend you may be able
to take away comfort and hope from the courage of its
author. We have and we will be back visiting again as
well.
Update: June, 2007 - Erienne's site has been
revised and much of the original posts are no longer
available. Some media articles about her story
remain. In fairness, people move-on from these
kinds of experiences and that is positive. We
encourage our readers to continue to visit her site
and see the remarkable progress she has
made. You can also learn about her new CD
and find out where Erienne is performing.
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Northeast
Center for Special Care QUICK FACTS:
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- AVM:
A cerebral arteriovenous malformation is a congenital
disorder (present at birth) of the brain's blood
vessels. It is characterized by an abnormal connection
between the arteries and the veins in the brain.
The cause of cerebral arteriovenous malformation (AVM)
is unknown. The condition occurs when, in the brain,
one or more blood vessels develop in which the
arteries connect directly to the veins, without having
the normal capillaries between them. Source: National
Institute of Health.
- Embolization:
Involves plugging up access to the
malformation. This technique does not
require opening the skull to expose the
brain and can be used to treat deep AVMs.
Using x-ray images as a guide, a catheter is
threaded through the artery in the thigh
(femoral artery) to the affected area. The
patient remains awake during the procedure
and medications can be administered to
prevent discomfort. A device is inserted
through the catheter into the AVM, and
released there to block the blood supply to
the malformation. The device may be metal
spheres, an adhesive, a hardening polymer,
or other such substance. There may be
a mild headache or nausea associated with
the procedure, but patients may resume
normal activities after leaving the
hospital. At least two or three embolization
procedures are usually necessary at
intervals of 2–6 weeks. At least a
three-day hospital stay is associated with
each embolization. Embolization rarely
provides complete blockage, and may be used
prior to one or the other types of
treatment. Source: "Arteriovenous
Malformations." Encyclopedia of
Neurological Disorders. Ed. Stacey L.
Chamberlin and Brigham Narins. Gale, 2005. eNotes.com.
2006. 16 Feb, 2006
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Do you have a web resource you think we should consider for
our website of the month? Sites can be personal,
professional, informative, educational or
organizations. Our primary criteria is that a site be
unique in some way and offer it's readers useful
information and insight. Please click on Suggest-a-Site
and let us know about it.
Sites we select will receive a customized award
graphic
Please don't forget to check back with us next month when we
highlight another award-winning website.
Website of the Month Archive:
February 2006: Vent
Weaning
January 2006: Brain
Injury News and Information Blog
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