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Scimitar Syndrome
Forum: The Heart Forum
Topic: Congenital Heart
Subject: Scimitar Syndrome
From To Post
JenF22
06/09/2001
Hello, I am a 26 year old non-smoking, non-drinking female.
I was diagnosed with
Scimitar Syndrome
at age 6 when they noticed I still had a heart murmor.
A heart cath was done at that time. They came to the conclusion
that since I was asymptomatic at the time, they'd just
"sit and wait". Since then I've had routine
EKGs, chest X-rays and echos. I recently had an echo done
in April that showed mild to moderate tricuspid regurgitation,
mild to moderate pulmonary hypertension, mild flattening
of the interventricular septum, mild enlargement of the
right atrium, mild to moderately enlarged right ventricle,
and a trace of mitral regurgitation. Since then, I've
had a spiral CT done which confirmed the Scimitar Syndrome.
It showed right lung drainage to the inferior vena cava
and the right atrium (via two separate passageways). My
cardiologist would like to refer me to a pediatric cardiologist
for a heart cath and surgery to correct. The initial thought
was to ref er me to Denver Children's Hospital. However,
I am very hesitant to go there due to their recent cardiology
department issues (they've been in the paper a lot and
their infant death rate following/during open-heart surgery
was almost twice the national average). I've done a lot
of reading on this and found a chat board online for people
with Scimitar Syndrome. Everything I've read so far says
that Philidelphia or Boston are the places to go to have
this surgery. I guess I'm writing to you to ask for help.
My current cardiologist is trying to work an insurance
referral to cover wherever I want to go for the surgery.
The problem is I don't know. This whole thing really scares
me. I'm only 26, my husband and I just bought our first
house, and we've got so much left to do still. Do you
have any ideas as to how I could find the hospital that's
done this procedure the most times successfully? I have
so many other questions... will my heart go back to normal
after the surgery? How about my lungs? Will the hypertension
go away? Will I get to keep both my lungs (a lot of the
articles I've read said they often remove the right lung
- though that is on infants)? Will I be able to have the
children after the surgery? Can I pass on Scimitar Syndrome?
How dangerous is the surgery? What are my chances for
survival?
I don't expect you to answer all of my questions, but
I would greatly appreciate any help you could give me
- especially in finding a surgeon.
Thanks for this forum and you help.
Jen
CCF-M.D.-CRC
06/11/2001
JenF22
Dear Jen,
"Scimitar syndrome"
is a complex consisting of partial anomalous pulmonary
venous return, hypoplasia of the right ventricle, dextroposition
of the the heart, pulmonary parenchymal abnormalities
and anomalous system supply to the lower lobe of teh right
lung from the aorta or its main branches. This complex
has been called "scimitar syndrome" because
of a characteristic finding on chest x-ray that looks
like a scimitar. Surgical repair is the definative therapy
for this syndrome and is relatively low risk. As far a
choosing a surgeon I would look at other things as well
as mortality rates. Mortality rates may be higher in specialized
hospitals because they are only treating the sickest patients.
Therefore a high mortality rate by itself does not mean
that a hospital or doctor is not good. I don't know any
pediatric cardiac surgeons in Philadelphia or Boston but
can give you the name of the one here. His name is Dr.
Roger Mee and he is very well kno wn and respected nationally
and internationally. You can call make an appointment
with him by calling 1-800-CCF-CARE and ask for extension
46915.
Best wishes.
joananddavid
08/19/2001
C2 . jen how are you doing? where did you decide to go?
my daughter was born with scimitar and other cardiac anomalies.
we are at boston now. she was born in january. they keep
telling us that this syndrome is rare but people do live
with it without even knowing. our issue is that she has
other things wrong and we are living without knowing her
chances of longevity with all her anomalies together,
i would be interested in haering about your situation.
keep in touch,
copolymer@aol.com joan and daughter andrea
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