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From: Elizabeth Wajnberg
To: Carol Thwaite
Sent: Friday, November 09, 2007 9:46 PM
Carol,
I have a surgery date with our good doctor (De Smet) on
December 18, not to resurface my other hip, unfortunately,
but to extract the resurf I have because I am allergic to
the metal! This past summer, my leg swelled, it was drained
of much pus which thank God was not infected - nobody knew
what it was except Dr. De Smet. At least we can now explain
that horrible groin pain I had after the operation, which
went away only because I was put on prednisone for the
colitis. Now I am on remicade, not as massive an immune
suppressant, so the hip inflamed again. One out of 500, says
the good doctor - to me it makes sense because my immune
system attacks my intestines too. He will replace with a big
ball ceramic total hip replacement (and I can forget about a
resurf on the other side, too) however the big ball ceramic
is also not available in the US, so there he is,
indispensable again.
Love,
Lizzy
Dear Pat,
How great to hear from you and rejoin my hippy clan! Rejoin
the human race, it might as well be--I was telling my
husband how different Part 2 of my hip saga has been from
the resurfacing two years ago when I was completely
supported and integrated into surfhippiedom. This is
inevitable, because the surface hippy site gives pioneer
patients strength by showing you what you have in common
with other sufferers, not by illustrating the rare
exception. I am grateful to remember that when I returned
post surgery with this unexplained and deeply embarrassing
groin pain—why did I have to spoil the wonderful group
experience with wonderful surgeon, etc?--how Alan, Keith and
Carol combed through the archives to find people with
similar pain, so I still don’t know if it was my psoas.
And won’t know for a while, because research hasn’' caught
up with it—Dr. Amstutz wanted me to wait until it did.
Unlike the surfacehippy supply of information, I had to go
to university computer to get more than the title of papers
dealing with immune reactions to metal implants. After I had
my hip drained, the infectious disease doctor insisted I see
an orthopod here; his understandably conservative opinion
was to do nothing. It wasn’t until a few weeks ago when Dr.
Amstutz' secretary called me to keep my appointment (what
for?) because there was a researcher Pat Campbell working on
this who had recently met Dr. De Smet in London and wanted
to do a blood test that might be used to screen people like
me, that I had company! I don’t have the results of the
blood test yet, but she and Dr. De Smet convinced me (you
are destroying your bones!) that I had to get the prosthesis
removed so I have a surgery date December 18.
As I said to Pat: I could believe anything wrong could
happen to my body, but I couldn't believe it of him. We know
his complication rate, and nowhere on the revision page was
there written "metal allergy" so how could I have one? (OK,
I could have anything, but how could he have it?) Well, Dr.
De Smet said it was time to update his website page and
include that one out of every 500 that has this. Of course,
how many surgeons would come across it, they have to have
done thousands of operations?
Please post my message, including my note to Carol - thanks
to her it got to you. It explains how the immune reaction
went dormant for a while, under prednisone. Thank you for
having a website of us exceptions. And of course I am dying
to read my fellow exception’s story, I bet it’s a doozie.
love,
Lizzie
Hello again
I am a devoted and returning hippie who had her right hip
resurfaced exactly
two years ago in Belgium by Dr. De Smet, and had made a
surgery date to have the left hip done this September.
Everything went well with my first surgery, except for an
unexplained groin pain that showed up three weeks after and
lasted months --and that I complained about here until it
disappeared. Must add that in the two years after I was
flaring with colitis much of the time and was put on
prednisone, and finally, remicade -
immune suppressants, antiinflammatories.
This spring, while well on remicade, my left hip turned
arthritic and I wrote to
Dr. De Smet. But my right hip strangely began to hurt
too, more extremely than could be ascribed to compensating.
I couldn't stretch my psoas, and a swelling appeared in my
anterior hip crease/groin area. I don't have an orthopedic
surgeon where I live who knows resurfacing, but the hip was
drained under catscan with 70cc of pus withdrawn which the
radiologist
said about half what was there. It was drained again,
cultured and sent for
chromium/ cobalt counts according to Dr. De Smet's
instructions. While waiting for the cultures, a doctor of
infectious diseases was called in, who, expecting an
infection, put me on intravenous antibiotics and had a
catheter installed.
The cultures came back, to everyone's surprise and my
relief, to be negative.
But my cobalt levels, which had to be sent to Mayo Clinic
for analysis, were high, according to Dr. De Smet. We don't
know exactly what is happening, but Dr. De Smet supposes an
allergy to the metal. Why now? A bone scan picked up more
activity from the left arthritic hip than the right. O wait
a moment. There is one bacterium --atypical
mycobacterium--associated with remicade not checked out yet
(too eager to get rid of my catheter with the fluid) But it
will be.
So still can be infection or metal allergy. Wanted to report
in. Now the extra
fluid has been drained, the pain is gone, I can stretch my
psoas, and my resurfacing seems just too good to have to
lose. I have been hoping to keep it all this time.
Lizzie
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