From: Elizabeth Wajnberg
To: Carol Thwaite
Sent: Friday, November 09, 2007 9:46 PM
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.
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.
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.