--- In
chiari@yahoogroups.com,
Amy Mather
<amymather79@...> wrote:

Hi all

I did some
investigation into
upright MRIs today and
thought I would share
my findings with the
group. A
recent research study
by EDS and Chiari
experts in the
US showed that patients
who have a connective
tissue
disorder alongside
Chiari are more likely
to suffer
more symptoms when they
sit/stand due to cranial
settling, and that the
usual supine MRIs fail
to show
up what is happening.
They found that an
upright MRI
actually showed up the
mechanisms causing
symptoms and
as such was much more
helpful. The abstract
from the
study is posted
under 'files' on the
ACM_EDS_TSC
group. If your symptoms
are worse when standing
and
you suspect you have a
connective tissue
disorder then
it might be worth
pursuing an upright
MRI.

The only place offering
upright MRIs in the UK
is a
place called The London
Upright MRI Centre,
which as
the name suggests, is
in central London. They
charge
£725 per scan. If you
want to get it for
free, your NS
must refer you and give
them a letter
guaranteeing
that the fee will be
paid by the NHS. So
basically
your NS must believe
that it is necessary
and be
willing to refer you
for it in order for it
to be
free!

If this doesn't happen
and you don't get the
fee paid
by the NHS then the
centre accepts private
appts but
you still need a
referral from your GP.
So at the very
least, your GP must
accept that you need
the upright
scan. I'm not sure what
you do if neither your
GP nor
your NS is willing...

Anyway it is
encouraging that this
place exists, at
the very least. Their
website is:
http://www.uprightmri.co
.uk/

I hope this info is
useful for some people!
I'd be
really interested to
hear from anyone who
has been for
a scan at this centre.

Hope everyone is having
as good a day as
possible,

Amy





________________________
________________________
___________
NEW Yahoo! Cars - sell
your car and browse
thousands of new and
used cars online!
http://uk.cars.yahoo.com
/

--- End forwarded
message ---