From: larrabee@cse.ucsc.edu (Tracy Larrabee)
Newsgroups: misc.kids
Subject: My experiences: CVS v. Amnio
Date: 30 Jul 92 21:19:09 GMT
Organization: University of California, Santa Cruz (CE/CIS Boards)
NNTP-Posting-Host: mizar.ucsc.edu

I have been meaning to post about my experiences with CVS vs amnio.  I
had an amnio last time, which lead to bad results, and I had CVS this
time, which produced favorable results.  It is possible my reactions
are colored by the results, but I hope not.  This is a consumer-level
review, but I have included some of the UCSF literature at the end 
of the posting (clearly marked).

First of all, for the (not small) number of you in the Bay area, if
you are in the market for genetic testing and you are trying to decide
between Stanford and UCSF, I can't tell you how much more I recommend
UCSF (whether you opt for amnio or CVS).  Stanford was awful--simply
awful.  I probably ran into more than the average set of problems
(they lost my record and appointments and accused me of manufacturing
my appointment and arangements), but the whole place was obviously
overloaded and thus it appeared rather uncaring.  Even when my results
came back as very, very bad, they still didn't have time to deal with
me.  I mean, I was one of the fraction of 1 percent of the people who
actually need to talk to the genetic counselors because of bad results
and they were constantly implying they were doing too many important
things to deal with me.  They gave me the number for a support group
and sighed heavily when I wanted to ask more questions of them
personally.  I mentioned one of the signs of Trisomy-18 (choroid
plexus cysts) to my Stanford genetic counselor and she looked blank.

UCSF, by comparison, had a totally different atmosphere: they were
friendly, they told me what to expect, they answered all my questions
(including very detailed technical questions from journal references),
they had much nicer facilities (and as a state school, I doubt they
are richer than Stanford), and they exuded competence and normalcy.
Some of the touches were very small, but enough small touches make a
big difference (things like always telling me before they did things,
introducing themselves, asking permission for things, and putting a
nice poster on the ceiling over the examination table). The UCSF
genetic counselor not only knew of the cysts that mystified my
Stanford counselor, she brought them up.  She seemed upset at some of
the information I had that I received from Stanford, though she went
out of her way to say "well, what *we* say is this, which is supported
by this research here.." and not to correct a colleague.  I
appreciated the way they put my fears to rest as much as I appreciated
the technical competence.  The actual sampling procedure (not counting
set up) took about 60 seconds.  The doctor who did it is a
world-renowned expert in the procedure and has done thousands of CVS
procedures.  I had to drive for 2 hours to get to UCSF, but I would
have driven a lot more.

Why did I put all this in a posting that is going out with such wide
distribution?  Because I think the differences in atmosphere and
safety record could well be repeated around the world.  If you have a
choice, look into your options.  I would never have put up with
Stanford if I had realized how much better things could be.

***************************************************************
Now for the info they sent me when I started investigating CVS (from
a sheet they sent me).  I emphasize that this is preliminary information
and that they gave me *much* more detailed info on the phone and in person.
***************************************************************
Info sheet date: September, 1990

**Did you know there is an alternative to amniocentesis for prenatal diagnosis?

It is called Chorionic Villus Sampling (CVS).  If you are approaching
10 menstrual weeks and planning to have prenatal diagnosis you should
know about CVS.  CVS is not for everyone, but many women have used
this method of prenatal diagnosis to obtain earlier results.

CVS can be carried out anytime after 10 menstrual weeks.  The
chorionic villi are part of the tissues which surround the fetus and
eventually become the plascenta (afterbirth).  A small sample of
chorionic villi is removed using a catheter (a thin tube) inserted
through the vagina (10-12 weeks) or a thin needle inserted through the
abdominal wall (from 10 weeks on) into the uterus under ultrasound
guidance.  Diagnostic results are usually available within 2-3 weeks.
CVS has been carried out on more than one hundred thousand pregnant
women to date.

For about 15 years amniocentesis has been the primary method available
for routine screening of the developing fetus for DOWN syndrome and
other genetic abnormalities.  The procedure is performed at 18
menstrual weeks by inserting a needle through the abdominal wall into
the amniotic fluid which surrounds the fetus.  A small amount of fluid
is removed and the cells floating in it are cultured for study.
Results are usually available withing 2-3 weeks.

**Which Procedure is best for prenatal diagnosis?

There are advantages and disadvantages to each procedure.  Although
amniocentesis is performed later in pregnancy, it has been used for
many years and considerable information is available about its safety
and accuracy.  A previous national study involving 2,000 American
women like yourself found that the risk of miscarriage due to
amniocentesis is 1 in 200 or less.  The UCSF data indicate a
procedural loss rate in our hands of approximately 2:1000.

Diagnostic results from CVS are available earlier.  Experience
indicates that CVS provides accurate diagnostic information and that
the risk to the pregnancy is quite low.  The UCSF data indicate a
procedural loss rate in our hands of approximately 2-3:1000 [But the
national rates are much higher--tl].  There is no difference in the
transvaginal and transabdominal CVS loss rates.

**How can I find out more about CVS and amniocentesis?

IF your obstetrician recommends prenatal diagnosis, you may wish to
contact the prenatal diagnosis center listed on this stationery.  The
center staff can tell you more about amniocentesis and CVS. [I'm
leaving off the phone numbers--tl]
--
Tracy Larrabee 		larrabee@cse.ucsc.edu
Newsgroups: misc.kids