Letter to Rush University

Rush University has an orthopedic group that has created metal reaction testing, which is slowly becoming more important as the number of orthpedic implants continue to grow each year. I had testing done back in August/September of 2008, and from what I've heard on some of the spine message boards they have not gotten much response back from doctors/patients after the results are given. So I decided to take the time to write the Director of the group, who was the one initially contacted about my situation and decided I would share.

Why am I doing this? Well, not so much for my friends and family, but more for anyone who is researching ADR's and comes across my site. A popular spine message board I use to frequent is really promoting the artificial disc - in fact, the head guy just put out a video about it showing several people making the decision to have the surgery, and then showing how great it was for them. This obviously goes against my own experience (and the experience of many others), and I feel there is a responsibility to show both sides. So in an effort to continue to log my story until I find a better way to share information, I decided to post the letter here.

January 15, 2010

My name is Carrie Fairfield, and in August 2008 I had blood work sent to your facility for metal reaction testing. I had received a Charite artificial disc at L5/S1 in May 2005, and though it had initially been successful I had been suffering for over three years with unexplained pain and blood abnormalities that had yet to be diagnosed. After consulting with my spine surgeon, Dr. Scot Miller at Crystal Clinic in Akron – who had contacted Dr. Paul McAfee with Towson Orthopaedic Associates in Towson, Maryland – the recommendation was to have blood testing performed through Rush University utilizing the techniques you had developed.

I cannot begin to describe the difficult journey I had been on for over three years by the time I had the blood testing completed. I had been to over 15 surgeons and physicians, none of whom could explain why I was dealing with spine, joint and all-over-body pain, in addition to a high anti-nuclear antibody count and a very low platelet count, none of which I had experienced prior to the artificial disc replacement.

I was 28 years old when I had the artificial disc replacement (ADR) performed, and with the exception of disc degeneration at L5/S1 I was in perfect health. Before I had the ADR I had asked my surgeon if a metal reaction was possible and was told no. I asked every doctor that I met for three years the same question, and it was always no. Yet from my own research and medical articles and studies I had come across, I strongly felt that it was a possibility. I just needed to find someone who could test me. In the meantime I suffered constantly from severe pain, which greatly limited my life. I continued to worsen year after year, and went from an active individual to someone who could barely make it through a work day, only to come home and regenerate so I could do it all over the next day. I saw my future and feared it wouldn’t be long before I had to quit my job and lose the last part of a “normal” life; I had already lost everything else.

When I received the results from your medical group, it showed a high reaction to nickel, a component used in the artificial disc. I was also slightly reactive to two other metals used in the disc. Given the results I was referred to Dr. McAfee, who removed the artificial disc and replaced it with a fusion in December 2008. Prior to that surgery, my platelet count was down to 16,000.

While the disc had been removed, due to the high risk of the surgery surgeons had put in an IVC filter, made of nickel, prior to the surgery. This was kept in until February 2009 before it was removed. My platelet count at the time of the procedure was 9,000.

In April 2009 I started feeling slightly improved in regards to the joint and all-over body pain. I had my platelet count tested, and it came back at 23,000. In July 2009 I had my count tested again, and for the first time since before the ADR it was at a normal level – 190,000. My local physician was shocked at the unexpected increase and had them rerun the test; the count came back at 191,000.

As of October 2009, after being nickel and metal free for eight months, my platelet count is 331,000. My ANA count is still high, but it seems to be a non-issue. While I am still experiencing pain in my joints, it is not severe as it was for the three years prior. The all-over body pain is gone. The overall pain levels are greatly reduced, and slowly I am getting my life back at the age of 33.

If I had not had your testing available to me, I don’t know where I would be right now. In my eyes, you saved my life. You gave me answers when no one else could, and those answers allowed surgeons to take action and remove the artificial disc, which I believe was the cause of my issues. Even physicians who were very skeptical of metal reactions have seen my progress and are now starting to admit that maybe there is something to it after all.

For over three years I was on a very solitary road as a patient. I cannot begin to thank you and your team for the service you are providing. In a time where implants are becoming more common, I believe that this is an area that must be explored more. Patients need to be educated on potential metal reactions; even though they might not be commonplace, I believe they do exist. So many physicians out there, including those at large organizations such as The Cleveland Clinic, have turned a blind eye to this information. This puts a burden on the patient to try to get information on this topic, and I will say from experience it is not easy or readily available.

I hope you do not mind, but I have shared my journey and information on the testing you provide on several spine message boards. I am already aware of several individuals who have opted for the testing before getting the ADR, and one who tested with high reactivity to almost every component in the disc. Again, I feel you are providing a very valuable service and I want people to be aware it exists so they can take advantage of it if they feel it makes sense for them.

It was on one of these boards where I learned that you had not been receiving much feedback as to what happened once the testing was completed & the results were given to the patient, which is why I’m writing today. Without your testing, I would have likely had a fusion with the artificial disc being left in. No surgeon I had seen recommended removing it; I hate to think of the condition I would be in today had I allowed that to take place. Your testing allowed me to finally get the treatment I desperately needed, and for that I sincerely thank you. If there is ever anything I can do for you or your organization, I would be happy to return the favor.

Sincerely,

Carrie L. Fairfield