Well said, Mark. Is there really an MRI that shows adhesions? Wow! You know,
Endometriosis doesn't show up on regular MRIs or CATs either. I wonder if it
would show up on this new kind of MRI too. Sometimes, especially when I'm in
pain- I just want to veg and not even research anymore-been that way since
this last surgery. And if I talk to one more doctor that doesn't believe me,
I may have to just go postal(no offense to any postal workers)! Maybe it
would be better channeled by writing a nice letter to our new Surgeon
General. Thanks.
Wishing Pain-Free Days to Us All!
Christi
My mom told me that it was like I had kudzu growing in me....best
description yet for adhesions and endo!
-------Original Message-------
From: Mark in Seattle
Date: 1/28/2009 2:40:20 AM
To: Multiple recipients of list ADHESIONS
Subject: Passion and anger
I'll say this: I think Diana, in her passion, has a point. If there is
anyone here who has not done something to channel their disappointment
and anger into something constructive, then I don't think you have a leg
to stand on to complain.
I think writing to Oprah is a fine idea. Another idea is to write a
letter to the US Surgeon General. Tell him we're confused by scientific
studies. What does the science tell us about adhesiolysis? Is it
working? I've seen a study that says it has a success rate between 46 to
87 percent. ( World Journal of Surgery, March 2006) Can you pin that
rate down a little more? Is it closer to 46 percent or closer to 87
percent?
Office of the Surgeon General
5600 Fishers Lane
Room 18-66
Rockville, MD 20857
Being angry is good if it motivates you to do something that is
uncomfortable or difficult. Being angry with each other, however, is
probably energy that is misdirected. Being angry at doctors is closer
to the target. It's not a bulls-eye. But it's closer to it.
I'm surprised we're not discussing the breaking news about the
Functional MRI test for adhesions. Isn't anyone excited that we may now
have something that we can use to show doctors that this disease is
real? Granted it may not be perfect, but it's something tangible. That
could make all the difference in terms of funding research. Now we can
measure if something is working. Proof. It's what makes science,
science. Now may be the best time to kick down some doors. It might
actually get a response.
Citation:
Sonja Buhmann-Kirchhoff, Reinhold Lang, Chlodwig Kirchhoff, Heinrich
Otto Steitz, Karl Walter Jauch, Maximilian Reiser and Andreas Lienemann,
European Radiology, June 2008, Functional cine MR Imaging for the
Detection and Mapping of Intraabdominal Adhesions: Method and Surgical
Correlation
Yours,
--
Mark in Seattle