Tuesday, March 15, 2011
Interesting findings from my final two consults-will share in sequence over the next 4 days.
My final consultations yesterday resulted in some interesting findings from my perspective in five ways:
(1) Some solid criteria for making the decision to have a revision surgery was suggested by the consults. I was very happy to receive the feedback. That summary appears below.
(will cover the rest below in subsequent posts.)
(2) What I uncovered re the FDA’s perspective of the issues from one of the consults
(3) My understanding from the toxicology consult with respect to a number of issues we have discussed previously in the blog re chromium and cobalt toxicity.
(4) Testing for chromium and cobalt toxicity.
(5) Vitamin abstinence prior to taking the chromium and cobalt tests
I spent the day with the last two consults with whom I wanted to touch base prior to my making a decision as to whether I should get the revision surgery. For those of you who are just joining this blog, I am one of the patients who for the most part, is asymptomatic but I have very high ion levels of chromium and cobalt. So, we as patients face a conundrum right? Should I do this or should I wait until I have painful symptoms?
The first consult I met with was an Orthopedic Surgeon specializing in ion toxicity. He is a rare bird as I am sure most of you will agree, most orthopedic surgeons seem to know very little about this problem and rightfully so. Most experts have very little information on the toxicity problem with this hip. I told him I really had very little confidence in the process of making this decision and could he provide some key points that he would use to consider the process of seeking or not seeking a revision surgery when you are exhibiting no outward symptoms. Here were his top 4 considerations (as a complex of considerations):
· Track record of the implant irrespective of the patient-the current implant seems to have issues.
· High Metal ion levels-he considered my levels to be very high. He said if the test levels I have are correct, he said that combined with the other three points would indicate strong consideration be given to a revision surgery (I revised this from yesterday as I didn't look at my notes prior to writing this bullet). He felt the deterioration of the tissue and the bone would continue unless the hip was removed and my MRI indicated damage to both even though I don’t experience consistent pain.
· Presence of osteolysis- The MRI confirmed that loss of bone has occurred. He again felt that the deterioration would likely continue unless the hip was removed.
· Soft tissue damage-Tthe MRI confirmed that as well.
No decision was rendered because he wanted to review the tests from his own lab. I repeated the blood tests with his own research lab since they have been running these tests with for 20 years and have the appropriate data to put the results in context. He said unless you had the correct data, the test interpretation has little validity. Apparently, most labs provide the context of chromium and cobalt results against the environmental exposure to these metals. Gee, that was news to me! I guess that seems reasonable though, given we have little information on the hips.
The second consult was a toxicologist and MD by training. His mission is to look not for localized problems around the bone and tissue but rather, to search for systemic issues whereby the metal has caused problems in your body away from the hip. He uses the FDA’s recommendation as to what to look for in hip toxicity cases:
· Heart (chest pain, shortness of breath)
· Nerves (numbness, weakness, changes in vision or hearing
· Thyroid (fatigue, feeling cold, weight gain)
· Kidney (change in urination habits.)
It came as a surprise to me that both consults seem to latch onto a diagnosis I had been given about 5-6 years ago called Hashimoto Thyroiditis; coincidently, right around the time of this surgery. They both seemed to think that there may be some kind of relation between high cobalt levels and thyroid issues. I need to research this further.
Posted by Connie at 4:31 PM