had a lumbar fusion? under 40? read me!

[Maddie]

Hi doc,

It seems we are living a parallel life, but I am a few steps ahead of you

I dodged a big bullet with the help of forum members throughout the net who advised me to have metal testing done before surgery. I'll post the link to the lab I used at the end.

Turns out I had major sensitivities to six of the most common metals. I wish I had done the dental testing at the same time, but that's another story....

Like you, I can't wear most jewellery. After five years of fighting the medical insurance system (unsuccessfully), I went out of country searching for help to my problems. Depending on who I consulted with, I needed three to five levels done in both my cervical and lumbar. My C5/6 was classed as critical by one of the top neurosurgeons in the US, who said I was one fall or bad bump away from quadraplegia. Since I have horses....well, you can see the issue there...

Unfortunately (or fortunately) I couldn't afford him and ended up having very successful surgery in Brazil with Dr. Luiz Pimenta, who helped design the NuVasive spine devices in California. If the insurance had come through months earlier, I would have had surgery in NYC before knowing that I had the severe metal sensitivities. It probably would have done me in, literally.

thanks for the info - my understanding though is that the fusion pieces are titanium, and adr's are an alloy including chromium and cobalt.

This is contrary to what I have learned over the past few years of research. I contacted several manufacturers and their engineers to find a non-metal device.

All surgical titanium is made from an alloy, usually including aluminum and vanadium totaling 10% of the composition. Since I am highly reactive to aluminum, as well as cobalt, chromium, iron, molybdenum and more, (including off the charts with nickel) my choices were slim.

There were two non-metal ADRs, one made of ceramic and the second which I eventually had inserted was made of silicone (a small disc) covered with a poly webbing. That webbing eventually grows into the adjacent vertebral bone and is held in place with four carbon fiber screws on the side of the bones. That was the NuVasive NeoDisc.

My two levels of fusion were done with PEEK cages, made of plastic discs and absolutely no metal hardware to hold things together. A matrix of ground up bone from the surgery and growth medium was put in the center spaces and everything just grew together nicely. I would have preferred having one ADR at L4/5 and the fusion at L5/S1, but there were no non-metal lumbar ADRs available that wouldn't have given me extreme grief. The L4/5 was done by XLIF, minimally invasive through the psoas muscle, and the L5/S1 was an ALIF because of complications with moderate slippage at that level.

I have just started conversing with a lady in the US who had a cervical ADR put in a year ago, and suspected that she was allergic to its metal. (She posted all this information on another forum) She has long lines of blisters and red rashes that follow along her blood vessels from her area of surgery...I suspect her lymphatic system...plus physical illness and fevers. She is in agony.

Her surgeons and primary care doctors refused to write a script for blood tests for the lab I went to, because 'the tests weren't reliable'. Meanwhile, they had no explanation for her illness/blisters/rashes. Only that she needed more time to recover from surgery. It has been a year already.........

She finally got a script from her chiropractor a short time ago, and got the results from the lab recently. She is reactive to nickel and other metals that the ADR contains. Now she has to figure out what to do about it.

With luck, now that she has proof of sensitivities, she will be able to find someone who can help. If they believe her......

My levels of sensitivities are much, much worse than hers, so I don't want to think of how bad my symptoms might have been, had I gone through with the normal surgery.

This is the contact for the lab in Chicago that did my testing.

Marco Caicedo, Ph.D
(312) 733-7121
www.orthopedicanalysis.com

They have separate tests for possible dental metal sensitivities as well, which I forgot to ask for at the time, and you can combine the various test 'packages'. I highly recommend them for the help and support they gave me. They of course have a disclaimer on their site regarding the results and their uses, so you must use your own judgement about this. For me though, it was literally a life saver.

If you would like to discuss this over the phone, I'd be glad to touch base with you...it's a lot to digest

[laid up doc]

Maddie,

Thank you for your thoughtful reply - I will definitely have a long discussion w/ the surgeons I am seeing this week, and will do my darndest to get the testing done before I have any metal put in my body. If the surgeon won't order it, I know my PCP will.

Unless there's something terrible on the allergy testing, at least a fusion, even if instrumented, can have the hardware removed if there are problems later (as long as there is a good arthrosis). Lumbar ADR removal, I understand, is a nightmare.

I do have a tooth implant that's been in for 2.5 yrs w/o any trouble - but when I had braces as an adult, my lips were constantly inflamed, in addition to my aforementioned problems with jewelry, watches, etc. Lots of other fun allergies to god-knows-what but I'll get a rash if I use a different detergent, sleep in a hotel (sometimes), and have most recently had an allergic reaction to azithromycin - which pretty much no one is allergic to!

Being a medical professional, I'm eternally grateful to NOT have one relatively common allergy - LATEX, and not to any other antibiotics.

No offense in response to the similarity comment, but I sincerely hope that this will be my first, last, and only bad disc - at least til it's "time" for DDD/DJD. I'm only 33 and had a horse fall then MVA that seem to be the primary instigators.

I've had flex/ex xrays, CT's, MRI's, an EMG, a DEXA and a mess of blood work (for 2 foot stress fx - turns out it's just crappy feet), and discograms... all showing "just" this one bad disc - and luckily no OA yet at that level, even.

For the less medically savvy - that means no spondylolisthesis (slippage), facet joint disease, osteoarthritis, bone spurs, hormone or metabolic abnormalities, or autoimmune disease.

So anyway - thanks again, I will update this thread later when I've had my 2 consults this week, and apartment-hunted in my hometown.

[Maddie]

For the less medically savvy - that means no spondylolisthesis (slippage), facet joint disease, osteoarthritis, bone spurs, hormone or metabolic abnormalities, or autoimmune disease.

Wow, you do realize how lucky you are, right?! Of course you do, but I'm amazed that spurs or something similar hasn't popped up with your history. I've always said that if I was a horse, I would have been shipped to the glue factory a long time ago. My conformation is terrible! Yours must be so much better to not have the wear and tear I have.

I got a new PCP after I had surgery, and when he saw my x-rays and CT scans I had done for a check-up, he commented that he would have thought it was the spine of an eighty year old, instead of one in her mid- fifties. He basically said I was a mess, and would be surprised if I didn't need more surgeries later in life. And this was after I was 'fixed' Gee, that was encouraging!

And no offense taken at the parallel life comment! I'd be thrilled if you were spared the extra steps I've had to take.

I have always thought that a sort of 'Public Service Announcement' sticky should be put at the top of these spine forums, to warn people of the risk of going ahead with surgery involving metals if they are showing any signs of allergies. While some revisions may be easier than others, it would be difficult to justify putting someone through a second surgery, or worse, not recognizing the signs at all and having the patient continue to suffer from this.

The other issue is finding non-metal hardware that is appropriate to each individual case. I am very grateful that my problems were able to be addressed, that new technology had come far enough to let me have the ADR I have now.

I never would have found any of this without these forums.

[Harrison]

Maddie, Doc -- what a helpful topic for so many patients! Thank you for sharing your thoughts and lessons as it will help many.

Maddie, you probably saw this topic which is a sticky:

ADR Risks, Complications, Disqualifications

I have not checked it in a while, but will revisit it to ensure the allergy topic is covered. You've done a great public service by sharing what you learned; but I am so sorry you had to learn the hard way!

Peace & good health to you always,

[Maddie]

Harrison, yes a long time ago, I think I checked that thread

But would it be possible to put a sticky specifically about this problem? I think it may get more attention if it wasn't included in a list with others, and I don't think many patients would think it was very probable. The other lady I spoke about is now the fifth person that I've heard about with this issue, and most had already had surgery.

If the doctors don't take it seriously, what does that say for the rest of us?

[Harrison]

Thanks Maddie, for caring. Of course! I'll send you a PM when I get a breather.

[laid up doc]

Maddie,

Just spoke w/ Dr Marco Caicedo - he was VERY helpful, as you said! I am having patch testing w/ an occupational dermatologist on Monday, and I asked him about when to know if you need LTT

I asked him about whether one would still need the LTT (lymphocyte transformation test) testing if patch testing was positive. he said that "most" people who test positive on patch testing will also test positive on the LTT. it's really anything that you DON'T have a patch test reaction to that you need to worry about. since i'm definitely allergic to nickel (per history of jewelry rxns), i need to look into this metal issue.

he also mentioned that some orthopedists are very gung-ho about this testing, and others poo-pooh it. some order it for almost everyone, some just for a few, and some don't believe in it at all. just like everything else spine-related, it seems!