Metallosis patients / heavy metal poisoning specialist

Posted by Hurkey @hurkey, Jul 17, 2024

To those of you who have experienced metallosis, did you seek out a heavy metal poisoning specialist to help you through? Or did your ortho know the procedure to follow?

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Profile picture for Sue, Volunteer Mentor @sueinmn

Sorry Bonnie, Mayo Connect is a patient and caregiver support group, not a medical referral system. You have a pretty rare situation, and it would depend on whether any other members in your area have had the same surgery.
When I needed a relatively uncommon procedure in my metro area, first I looked up board certified surgeons, then I read their bios, then I started calling those who seemed to fit the bill, and started calling. I also asked friends and family, my PT and my primary doc. Found an awesome hand surgeon, and would be seeing them still, but they moved to Florida.
By the way, my chosen hip revision surgeon was in the same practice as the original doc, and we have gotten on fine for going on 15 years. He is frequently listed among the top ortho surgeons in my area.

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I've done the things you've suggested. Unfortunately the my original surgeon isn't fond of me because I ask questions, he is retiring and was very flippant and condescending this last visit though he agreed to do the surgery. My trepedation that I won't get an unbiased opinion from the two surgeons in his group that I have upcoming consultations with is because he's the head huncho there. I can only go and hopefully come away with a better outcome.

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Profile picture for Sue, Volunteer Mentor @sueinmn

Sorry Bonnie, Mayo Connect is a patient and caregiver support group, not a medical referral system. You have a pretty rare situation, and it would depend on whether any other members in your area have had the same surgery.
When I needed a relatively uncommon procedure in my metro area, first I looked up board certified surgeons, then I read their bios, then I started calling those who seemed to fit the bill, and started calling. I also asked friends and family, my PT and my primary doc. Found an awesome hand surgeon, and would be seeing them still, but they moved to Florida.
By the way, my chosen hip revision surgeon was in the same practice as the original doc, and we have gotten on fine for going on 15 years. He is frequently listed among the top ortho surgeons in my area.

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I have out-of-network coverage, may I ask who and where your revision surgery is? Thank you for your response.

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Profile picture for bdwmc @bdwmc

Thank you. My cobalt is 10.9 chromium 5.6. My mom hip is almost 20 years old. That surgeon is retiring in 9 months. I have not found surgeons who have vast experience with these types of revisions in Seattle or the surrounding areas. I have referrals to the U of W and 3 other surgeons. However, two of the referrals are with docs that are with the same group that my original MOM hip surgeon is with. I don't trust him for reasons I won't mention here. He agreed to replace this with a Tapestry Zimmer biomet with synthetic collagen. He didn't want to answer my questions and though I am unable to take ANY type of NSAIDS anymore, he insisted on one. No opiates post surgery. The hospital where the original surgery was done didn't keep records for 20 years. The law was 10 years, although now it's 26 years. Most potential surgeons want to see the surgical records. I'm not sure how to move forward. Also, my insurance doesn't cover out of network providers. 😑

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I got my surgical reports more than 10 yrs later…it wasn’t easy. The moved them from the hospital where I had surgery to their main campus in Houston. The still, it was a matter of following up with the same person for quite some time..She was the one that made it happen

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Profile picture for bdwmc @bdwmc

I have out-of-network coverage, may I ask who and where your revision surgery is? Thank you for your response.

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My revision surgeon is in Minnesota. But I know you have some fabulous orthos in Seattle. My nephew was sent there because there is even a doc who specializes in replacing hips in people with avascular necrosis (bone death). Find a local listing of the "top orthopedic surgeons in the Seattle area." Then use it to track down a listing of their bios with education and skill sets listed.

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I became aware of the effects of metalosis through my wife. My ortho never brought it up. My PCP was aware of it and the doctor my wife was seeing for chelation. To be honest, I didn't heed my wife's advice to have chelation until I began to read many of the related posts on this forum. Thank you all for sharing.

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Profile picture for Sue, Volunteer Mentor @sueinmn

My revision surgeon is in Minnesota. But I know you have some fabulous orthos in Seattle. My nephew was sent there because there is even a doc who specializes in replacing hips in people with avascular necrosis (bone death). Find a local listing of the "top orthopedic surgeons in the Seattle area." Then use it to track down a listing of their bios with education and skill sets listed.

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Thanks, yes I have a list. I have two consults this month, working on a third. I turned to my cities FB group. Many suggested the same surgeons I'm going to see! Plus one more that I asked my PCP to give me a referral to. Now it's just being patient while I do strengthening exercises. ❤️‍🩹

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Profile picture for sickofbeinsick1. AKA Tina @sickofbeinsick1

I got my surgical reports more than 10 yrs later…it wasn’t easy. The moved them from the hospital where I had surgery to their main campus in Houston. The still, it was a matter of following up with the same person for quite some time..She was the one that made it happen

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Hi, I'm new here just figured out how to use this site. Thank you! I'll call overlake to ask where else the 2007 records might be. 💕

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Profile picture for tom1536 @tom1536

I became aware of the effects of metalosis through my wife. My ortho never brought it up. My PCP was aware of it and the doctor my wife was seeing for chelation. To be honest, I didn't heed my wife's advice to have chelation until I began to read many of the related posts on this forum. Thank you all for sharing.

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So instead of having the offending implant removed, you are doing chelation? To what end? Are you waiting for surgery? TIA ⚘️

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Profile picture for Sue, Volunteer Mentor @sueinmn

It has been a while since you posted. Have your levels been rechecked? Also, there are two cobalt tests that can yield very different results - blood cobalt and serum cobalt. Make sure they are using the same test each time.

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I don't mean to intrude here but I didn't know about the two methods for determining CO & CR levels. I need to check because my ankle surgeon looked at my hip X-rays and then ordered a blood draw that came back CO 10.9 CR 4.6. I had my PCP order another 3 months later CO 4.5 CR 1. The latter was from Quest the former was done at Labcorp.

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As I mentioned on a previous post, my implant shattered. Most of the pieces were removed; however a couple are too close to critical nerves for my surgeon to risk taking them out, also, my humerus had to be cut 7.5 inches and pryed open to remove the stem from my prior revision. Any time bones are broken, there's a risk of toxins being released. I won't know the full extent of my metalosis until my blood and stool tests come back.

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