Metal Allergies....Liz????

[Katie]

I think it was Liz who recommended that I get a blood test done for metal allergies before my ADR surgery. I've developed numerous allergies to common foods in the last year, and have always known that I've been very allergic to Nickel, through jewellery.

I just want to thank Liz for her help with this. I can't imagine the misery I would have had if I'd gone through with four level surgery and been allergic to all of the appliances.

My surgeon was quite alarmed when I mentioned the Nickel allergy a few months ago, so I promised that I would have the test done at Duke University. They test for about ten metal sensitivities, and I just got the results back today.

And no surprise to me, after all I've been through...I'm highly reactive to almost every metal, including all of the ones used in ADR surgery. The only relevant one that tested 'mild' was titanium.

The manufacturers of several discs refused to give me the exact breakdown of their discs, saying that only my doctor was privy to that information. I wasn't impressed, and wanted to save him all the time involved in getting those details.

I don't know what the fusion hardware is composed of, so don't know if I am a candidate for that either now. After four years of fighting with the insurance outfit and finally finding a great surgeon who has agreed to work on me as I hoped, it now looks like these allergies will do me in.

I'm just waiting to hear from the surgeon, and his take on this new twist in the story.

Has anyone else ever heard of someone being allergic to this list:

Aluminum, Cobalt, Chromium, Iron, Molybdenum and Nickel. I'm mildly reactive to Zirconium, Vanadium and Titanium

[sahuaro]

I don't know why the manufacturers wouldn't give you that information since it is in the research literature and can be found on the internet. I do know that the Prestige ST is made of stainless steel, which means that it has some nickel in it, and the Prestige LP is made of titanium. Mark (and others here) can probably give you info on other ADR's but I think some are made with ceramic materials.

I am just wondering if you went with a titanium ADR, if there were some way of heading off and/or damping down a reaction.

[Katie]

I can get a rough idea of what's in an ADR, but not the accurate percentages. At least I haven't found a website that gives me that information. If anyone can send me a link, I'd be really grateful.

I'm not sure what you mean by heading off or damping down a reaction???? Maybe I'm more rattled than I think....my mind doesn't work well on a good day, let alone today

[Katie]

I forgot to add that the Maverick/Medtronic rep said that she couldn't give me specific numbers/percentages of metals in content because the disc was not approved yet in the US, and it could be thought of as advertising to give me that information. When I pointed out that I was from Canada, where it was used and approved, it did not sway her.

The rest said that their appliance contained 'some' nickel, a 'small percentage' of something else, etc. But they would tell my surgeon which doesn't make sense as per the advertising argument.

I guess it is a moot point anyway, because if I was only slightly reactive, I might have gotten away with a tiny amount of that certain metal being present, but not when I'm highly reactive.

It's just one more speed bump. There has to be something somewhere that will work, with which my surgeon is comfortable working.

[sahuaro]

I was thinking there might be something (medication) that would block your allergic reaction but a quick goggle search indicated that aside from cortisone--which has its own problems--there isn't anything. The allergic response releases T cells, not histamines.

Sure hope your surgeon can come up with a creative solution.

[Maria]

If it were me I'd be worried about what kind of reaction can occur w/metal allergies (if something used that is known to be high on allergen list for you) as I think there are all kinds of autoimmune diseases that seem to pop up that might be tied to various types of allergies to xyz and some of that being metal allergies.

However that being said perhaps there are meds that could be prescribed for life like the meds used when someone has a heart or other transplant and is on meds to fight rejection.

Again, certainly am not suggesting anything am just *wondering* and adding in two cents for thought...

[Katie]

Maria, that's a pretty brilliant idea! Way to go girl

I'm hoping that the surgeon knows a lot more than I do about an alternative...I think the chances of that are pretty good I'll keep you all posted on the progress...when I learn anything. As a good friend pointed out...I can't be the first person that this has happened to, so the manufacturers should be working on trials by now.

It isn't limited to ADR or fusion hardware. The lab said that the demand for this blood test first started when artificial hips and knees, etc. were becoming popular and people were getting ill for no apparent reason...both unexplained illness and infection type symptoms which were traced back to allergies to the metals inserted in the joints. I wish they worked a little faster on it.

[Maria]

Katie,
I think this is even with dental hardware and fillings. I know of someone with MS who was advised to get all his gold fillings removed which he did altho he's not certain it helped or not.

Good luck~ you're right, you're not the first person and you won't be the last tho you are you and need what works for you

[Katie]

Maria, my husband's colleague ran into the same thing. He had to get all his fillings removed because of a suspected reaction to the mercury or whatever else was in them. Not long after they were taken out, he made a significant recovery.

With all the pins and posts with the crowns, I'm sure I have lots of evil steel or whatever that is playing havoc with my system, but taking those out is not a simple process. False choppers could be on the horizon

[mmglobal]

These issues are so tough to deal with. The people who are looking into these types of issues tend to be pretty far down the road and unable to get a good diagnosis. There is no question in my mind about the horror stories of unscrupulous dentists doing tens of thousands of dollars worth of unnecessary and unproductive filling removals on patients who look at it as their last hope. There is also no question in my mind that some of these patients also get their lives back after having been to the brink with endless illness and disability, ultimately resolved by resolving something as rare as the metal allergies. (Any idea how rare?)

Katie, I'm so glad that you seem to have a good diagnosis and have what seems to be viable alternatives. I'll be very interested to see where this leads you... PEEK cages? autograft? allograft? There are even PEEK ADR's that will be coming around soon.

Keep us posted.

Mark

[Katie]

Thanks Mark. I haven't looked into any of the things you mentioned. They were never on the horizon so not necessary to check them out.

I'll have to do some major research now. Thanks for at least pointing me in the right direction. Other than looking for plastic (poly) or pure titanium things, I don't know which way to go, to be honest.