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 tom1536 @tom1536

I had my first prosthetic impact in my left shoulder shatter into pieces. The surgery was performed in 2012 and my Ortho, here in SC, said it was a poor design. He performed two revisions, one in 2021 and another 32 days ago. He was unable to get all the pieces out, owing to their close proximity to nerves.

I just started chelation a week ago. Im waiting for blood and stool test results to see what metals I may have issues with. I'm 71 and want to avoid any future issues with memory loss or other cerebral issues. I would recommend chelation if you have concerns about metabolism.

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Chelation is definitely good to remove toxins and metal.

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Profile picture for Sue, Volunteer Mentor @sueinmn

Tina - This is a suggestion I am making WITH A GREAT DEAL OF CAUTION. There were many lawsuits between 2010-2020 regarding metal-on-metal devices. If you Google your specific implant(s) you can see if yours were among those. If so, you can probably find links to a law firm that participated. Contact them for ADVICE on finding such a specialist, not for initiating a suit.

All that said, what do your latest metal tests say about the levels of chromium, serum cobalt and cadmium in your body? Has anyone suggested where the cadmium came from (not in MoM implants)?

Finally, are you seeing someone to help you deal with the fear and anxiety all fo the pain and uncertainty are causing?

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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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Profile picture for Sue, Volunteer Mentor @sueinmn

Tina - This is a suggestion I am making WITH A GREAT DEAL OF CAUTION. There were many lawsuits between 2010-2020 regarding metal-on-metal devices. If you Google your specific implant(s) you can see if yours were among those. If so, you can probably find links to a law firm that participated. Contact them for ADVICE on finding such a specialist, not for initiating a suit.

All that said, what do your latest metal tests say about the levels of chromium, serum cobalt and cadmium in your body? Has anyone suggested where the cadmium came from (not in MoM implants)?

Finally, are you seeing someone to help you deal with the fear and anxiety all fo the pain and uncertainty are causing?

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The blood labs were from ‘24…I only remembered Mayo Clinic whenever I posted a couple weeks ago. I have given up. So, no I’ve never sought out anyone other than what my ins co may suggest. My mental decline is more than I can deal with

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Is your mental decline entirely due to metalosis or would you also attribute it to the stress from pain and the search for the proper surgeon/solution? I have noticed brain fog these last 9 months and my MOM hip is definitely failing. The stress, pain and metalosis, I believe are all part of the 'brain fog' thing. Don't give up, there ARE doctors out there and a viable solution fir us. Have faith. Let's do the footwork to the best of our ability then let go. I suggest you contact SOLACE. They are an patient advocacy organization that will help. I've already been assigned an advocate. I am a strong advocate for myself but I have LTC insurance and my medical insurance to deal with. I am going to let them handle the insurance end while I find THE surgeon. I pray and meditate daily for my own sanity and for strength. Take care, we aren't alone. Best wishes ❤️

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I live near Seattle. I'm STILL trying to find a board certified fellowship trained orthopedic surgeon with metallosis and revision knowledge. There MUST be a few at least.

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I am not getting any feedback, I wonder if it's because I'm new here or if I am doing something wrong?

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Hi, I am trying to find a board certified fellowship trained Orthopedic Surgeon in the greater Seattle area that has metallosis and has done revisions. I know what questions to ask. I have two consults scheduled this month, but both are with the same group as my original MOM surgeon so I am curious to see if I get an unbiased opinion. My former decorated, highly esteemed surgeon is retiring, plus he wasn't interested in answering my questions. I am using Solace patient advocacy organization to help with the logistics. Hopefully we find the best surgeon near us.
Best Wishes, Bonnie

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Profile picture for bdwmc @bdwmc

Hi, I am trying to find a board certified fellowship trained Orthopedic Surgeon in the greater Seattle area that has metallosis and has done revisions. I know what questions to ask. I have two consults scheduled this month, but both are with the same group as my original MOM surgeon so I am curious to see if I get an unbiased opinion. My former decorated, highly esteemed surgeon is retiring, plus he wasn't interested in answering my questions. I am using Solace patient advocacy organization to help with the logistics. Hopefully we find the best surgeon near us.
Best Wishes, Bonnie

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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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While awaiting response from PCP about my now increased chromium 1.5 to 5.1( over two years)
Cobalt 10 to 13 (over six months )should I ask for a particular dental implant post material as bone graft process finished and I wanted it done before getting 2009 MoM hip implant revised
I'm requesting chelation in meantime tho kaiser has refused in past but now with increase maybe they'll do it.I see orthopedic surgeon October who did original surgery
I'm having major issues with right knee( hip is right also) and so afraid the necrosis may be affecting knee and wonder how I'll get thru rehab if knee isn't stable..
Also post cataract removal and laser( opacification happened) now vision issues, requested opthalmologist recheck .
I also have a nonverbal autistic, epileptic daughter who just had sigmoidectomy last year and tho has caregivers still needs my support
Yes it's a lot. I'm 77 October so am I just aging out of surgery anyhow?

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Profile picture for minajo @minajo

While awaiting response from PCP about my now increased chromium 1.5 to 5.1( over two years)
Cobalt 10 to 13 (over six months )should I ask for a particular dental implant post material as bone graft process finished and I wanted it done before getting 2009 MoM hip implant revised
I'm requesting chelation in meantime tho kaiser has refused in past but now with increase maybe they'll do it.I see orthopedic surgeon October who did original surgery
I'm having major issues with right knee( hip is right also) and so afraid the necrosis may be affecting knee and wonder how I'll get thru rehab if knee isn't stable..
Also post cataract removal and laser( opacification happened) now vision issues, requested opthalmologist recheck .
I also have a nonverbal autistic, epileptic daughter who just had sigmoidectomy last year and tho has caregivers still needs my support
Yes it's a lot. I'm 77 October so am I just aging out of surgery anyhow?

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Let's start with your last question, "...I'm 77 October so am I just aging out of surgery anyhow..."
No, many people in their 80's and even into their 90's can have joints replaced if their overal health is good.

Then, "...I'm having major issues with right knee( hip is right also) and so afraid the necrosis may be affecting knee and wonder how I'll get thru rehab if knee isn't stable..." - imaging of both knee and hip by the surgeon should be able to pinpoint where the biggest problem is, and which should be done first. It was knee problems (on my natural knee) after hip replacement that drove me back to the ortho surgeon. Once the hip was done, the knee issue went away over time.

Finally, it would seem to me that since you already have chromium/cobalt issues, you would want to avoid those materials in your implants. Also, stainless steel posts contain nickel, which some people are sensitive to - so possibly the titanium implants, which are much more inert, would be the choice for you - which has the dentist recommended?

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