Reactive to metal blood test finally confirms, I need help to find doctor to do revision to replace ADR, help

[sandy]

helol every one, I had adr prestige st c4 c5 put in august 2010, I have had pain ever since, constant inflammation, i get red around site and will break out blisters off on, i asked doctors why they have no idea, constant sick going to allergy doctor that didnt know why im haveing these allergys i never had before of course they do only indoor outdoor NOT metal tests i found out this year , it has taken me a whole year to figure out what is going on why sick all the time and severe pain in spine, DOCTORS kept saying you just had surgery give it time may take a year to heal, I have given year and i am sick of this pain and inflammation thats causeing the pain and the inflammation is from the adr, i had know this in my head since i got surgery something was wrong but i didnt listen to my gut , i just litened to doctors i was healing, The reason they gave me surgery was to releive pressure and inflammmtion from disc bulge and now im the same because the adr is causeing inflammation, i thought i was going to help my spine from pain and all i did was put a disc in to create more pain.

Im asking anyone here to please send me info on any doctors they know who do revision surgery to replace this adr with something i will not react too, Katie is wonderful to help with whom she had great results, but the more the better i was hopeing to find doctor in usa, as i dont have the funds to travel right now but if i have too it will have to be,.

the results showed
titanium 2.4 mildly reactive
pha positive control 13.0
nickel 4.7 reactive
iron 2.3 mildly reactive

my adr prestige st has nickel 13.00- 15.00 also iron for balance

I do not feel i should live with constant inflammation and immune system reacting everyday to this, its not like i can take it off or get away from it its in my neck, i cant imagine what its doing and how my boby is haveing a hard time with this response, please anyone i want this out as soon as possible, i need help so i can get better.

sandy

[Justin]

Hi Sandy,

Where are you located? You will most likely have to travel to a surgeon that does artificial disc replacement surgeries (there are only a handful that do lumbar cases, but since you are a cervical case it might be much easier to find a surgeon for removal).

I'm going to send you a private message with a few names.

[Katie]

Hi Sandy,

I'm glad you got the results...I thought they would be due this week.

The numbers you are quoting...are they for the 0.01mM or the 0.1mM readings? They would give you both on the second page of the report, or at least that is the way mine was set out.

The ratings for lymphocyte stimulation (reaction) from the blood test which is what this is based on (for those who are wondering what this means), are as follows:

Mildly reactive: 2-4
Reactive: 4-8
Highly reactive: above 8.

From what I understand from talking to the Lab, the body does not show any reaction to the metals in a reading under '2'. They test at different concentrations, thus the two different mM readings.

As a comparison, for the 0.1mM readings, these were my results:
Aluminum - 10.5
Cobalt - 38.8
Chromium - 73.9
Molybdenum - 83.5
Nickel - 101.8
Iron - 10.7 (which explains the severe reactions I have had to iron supplements/injections when I was anemic)

The reactions you have described to me sound extremely bad even at your comparatively lower levels, with the lines of blisters/rashes following your blood vessels on your arm & back, etc., the pain and heat...I can't imagine going through that all day, every day. You are very strong to have endured this for so long, especially with no one in the medical system believing you

I urge you to follow up on the list of surgeons that Justin has provided. Yours will be an interesting case And I'm glad to see that you are willing/able to travel if necessary to get relief.

Because there wasn't a lumbar ADR available that was metal free last year, I had to have two PEEK cages made of plastic in my L4/5/S1 levels. There are no extra metal rods, screws, plates, etc. NOTHING.

My cervical ADR is made up of a silicone disc with a poly webbing and held in place with carbon fiber screws instead of the normal titanium or stainless steel ones.

Your present ADR is a simpler design with screws instead of keels that grow into the vertebrae, so revision will hopefully be easier than the alternative designs.

During my search for a device that did not contain the listed metals above, I learned that surgical titanium contains aluminum and vanadium, ten percent in total. That limited my options considerably, as there weren't many that weren't made with that.

From what I understand, it wasn't the ADR per se that caused this reaction in you...any fusion surgery with metal support would have most likely done the same.

Sandy, our cases help to warn other patients about the risks of metal implants of any kind in our bodies. If anyone reacts in any way to jewellery etc., it would be a good idea to be tested before surgery. Thanks for sharing your story here (and it makes me feel less of a weirdo or 'special princess' as my hubby calls me ) And congratulations for pushing through the red tape and barriers to get the help you deserve.

Now, on to step two!

[KanRunMo]

Katie,

I'm wondering what symptoms you had before you were tested for metal allergies. I know nickel irritates my skin in earrings but it seems like most women I know were irritated by that in "cheap" jewelry. I just request 24 carot gold in all jewelry - Ha Ha. But as far as I know I've had no other symptoms and am not allergic to anything else in food or on my skin. Just wondering what caused you to think of getting tested for metal allergies.

[sandy]

kanrunmo

I had the adr surgery , doctor used prestige st cervical for c4 c5, I have been sick ever since , I turn sunburn red all neck collar bone across chest and across shoulders , I get these little blisters that ooze and itch offf and on alot,my spine burns bad in cervical area , my pain doctor said alot inflammtion in the cervical area, no one knew why this was happening till just 2 weeks ago one doctor put metal on the inside arms taped to me and i broke out rash in 5 minutes and itchy , ok doctor said possible allergy, i went had blood test confirm i have nickel reactive, titanium mild reactive and iron mild reactive, I have sick like someone has been poisoning my body for a year , I did not know when i signed up for adr that when the doctor said do you have any allergys at the time no, I didnt think to say oh yea by the way i cant wear cheap jewelry , I will never know if i said yes i have metal allergy would that doctor have said no we can not do surgery on you, I will ask him that question when i see him again. Has anyone here had surgery and has metal allergy and the doctors went ahead and performed surgery with metal implant, this device is just like hip implant its metal on metal rubbing, round metal ball sits in socket , and everytime i move head up down it clicks and sends a zing, like hitting to pieces metal together . I liked the speech doctor gave me before surgery, i am so young and i can have mobility still with the adr, what the heck do i care im in pain do what you want, i was signing papers for surgery on the bed before going in like you have time to read all this crap. All i can say is before surgery have a blood test to make sure you have no reaction to any metal they use, The doctors dont even know what elements make up stainless steal, if they dont know what they are putting in you run as fast as you can out of there, better yet ask the doctor what elements are in it, one doctor told me Its made of titanium i had to tell the doctor NO its stainless steal and tell him the components in it.

[Katie]

I'm wondering what symptoms you had before you were tested for metal allergies. I know nickel irritates my skin in earrings but it seems like most women I know were irritated by that in "cheap" jewelry.

Run, I had the typical symptoms like you described, the redness, blistering, itching etc. The lesser karats bother me and some 18K is OK, but I am too poor to invest in any now after surgery I've never had problems with any gold rings on my fingers, but my neck is a no go zone and my left ear is much more sensitive than my right...go figure! Those symptoms, in my humble opinion, are enough to warrant a metal sensitivity testing. It's how I started, but here is the rest of my history....(you can skip to near the bottom if you don't need the details )

I had an anaphylactic attack about twelve years ago, cause unknown, while driving a large truck. I was able to pull into a garage before I collapsed and woke up in an ambulance. Then after I moved to this province six years ago and my back flared, my food/environmental sensitivities really kicked in. But it seems like it went hand in hand with the ever increasing amounts of narcotics I had to take.

So on top of having extreme back pain that in the end had me almost completely bedridden except to fight my insurance appeals, I was feeling like I had a combination of the worst hangover ever mixed with the flu. I ached all over, had vertigo, nausea, on and on. I stopped eating wheat and felt about 25% better.

I then slowly eliminated all grains including corn and rice and all the supposed 'good' grains and eventually felt like I wanted to live again. Interestingly though, about two months after I started that elimination diet, we got a wagon load of wheat straw in for the horses' bedding and I sat on some bales while my husband did the work. Within ten minutes I was vomiting, and rushing to the hospital with another anaphylactic reaction. All this in the past four years. Epi-pens are my friend now

Now get this....I have been to allergists several times, and nothing shows positive except for mould

I finally found a fabulous doctor, a gastro specialist who takes me seriously and has come up with some answers for my weird symptoms. I have also had trouble swallowing for several years, and put it down to nerve damage from my cord compression at the cervical levels. It seemed to get a fair bit better after surgery, but not gone completely. Even water will just sit in my throat and refuse to go down...I know, sounds impossible, right (and it hurts!). Turns out, after a very intrusive scope again last month, that I have something called cat throat, (in layman's terms ). My throat literally goes from being nice and smooth to having vertical ribbing that interferes with the peristalsis, if I'm getting this right. It is apparently triggered by allergens.

Yesterday, he gave me the results from the biopsy from that scope which went from my throat down to my small bowel. Turns out that my villi ?? are very inflamed, something that happens from exposure to......wait for it......gluten. I have been so very careful to stay away from that for years now, and anything that slightly resembles it. My diet is extremely limited. But the gluten is getting in there somewhere. He said the inflammation indicates that it is something that I have been eating over a long term basis, not just one thing that got in by accident. I have been feeling so much better lately that this really surprised me. I'm not 100%, but finally enjoying life.

So I have an appointment booked with a dietitian in the next few weeks.

So my answer is very long and winding (winded??!) I'm afraid. My allergies and sensitivities have grown immensely over the past few years, but I've always had a bit with just the metals. It was another member here (Anna maybe?) who recommended that I get tested, but that was before I got really sick.

So Sandy and others, YES, surgical stainless steel does contain nickel, as well as chromium on occasion and other metals. Unless you get tested, you won't know what you are sensitive to, and after surgery it is almost too late. Sandy's immune system is very unhappy now, and it was preventable.

I had no idea that I was also sensitive to all those other metals...cobalt, chromium, aluminum....and those were only the ones for which I was tested. (Again, surgical titanium contains aluminum & other metals)

My other allergies kicked in very quickly, almost over a period of just a few months. So you could have a low level sensitivity brewing that you don't know about and putting the metals inside you could push your system over the edge. Not only does the tissue react to the metal by just being there, but wear and tear from the movement of the metals on each other releases ions into the blood stream.

I am now a huge advocate for this testing. Run, as you said, many women have this sensitivity to jewellery. Not just spine surgery has metals involved...joint replacement, clamps from surgery involving organs, etc., on and on. More and more allergies seem to be popping up in the general population.

I have a question for everyone....what would get your attention pre-surgery about this? Would a news story in the national publications do it, internet articles, TV news? There needs to be a greater awareness to the possibilities, and I'm mulling over ways to reach the masses.

I hope this question isn't lost in the overly long response

[KanRunMo]

Katie,

Thank you so much for the information on your metal allergy symptoms. That does explain a lot. I will definitely get the testing for metal allergies. I know a lot of people are allergic to gluten and most restaurants now have gluten-free menus. Like you, many people are allergic to various grains especially wheat and it probably is the gluten in them. My nephew has pretty much overcome severe asthma by becoming a strict vegetarian. I think he also limits his grains to mainly rice. My friend is allergic to a protein in milk (not Lactose- which is a sugar). We have to be careful about making dips with sour cream and have to warn her if something has cheese in it since she can't eat it either. It gets complicated. She can have yogurt which seems to be missing the milk protein.

Sandy,
I hope you are able to get the ADR removed soon. I'm sure it is miserable to have the itching, blisters and pain. Having friends around to chat with can help distract you. We've seen two good movies recently - "Stupid, Crazy, Love" and "The Help". Try those.

[Katie]

Kan, there are goat cheeses that agree with many milk intolerant people...lots of trial & error...and hard when the list of allergens seems to keep growing

Sandy, have you heard back from any surgeons yet? I find it surprising that those you have spoken too haven't taken the time to know more information about the devices they are inserting. And that they haven't had another patient with this problem. Or perhaps they have and have dismissed them as having some other issue, like they did with you

Let me know if there is anything else I can do, not that I've done much so far except be a sounding board

[speedyralph]

Hello Sandy,

I hope your stable. Reading your thread got me soooo upset at the fact that the greatest surgeons in the world, not to mention any DR's in particular, doesn't even recommend, advice, or talk about a possibility of metal allergies. I really really really feel for you and I can't possibly imagine the frustration you must be going thru.

Metal allergy tests of any kind should be a MUST! for any patient considering metal implants of any kind. It should be an industry standard. If it's not, then I think it should be up to the surgeons to incorporate these tests prior to cutting people up on the OR. I really don't want to jump conclusion here, but I can't help but to say that doctors have to know these possibilities when talking patients into artificial metal implants of any kind. In my opinion, if they don't bring it up, they are just in it for the money. I really hate to type this, but I can't help it.

I just had an M6-C with Mr. Boeree on Aug. 24, 2011 and I noticed three weeks after a little rectangle red sort of like pimple, with no head, form on the left side of my neck. Opposite to the incision. Now, its been like 2 weeks since this little thing on my neck hasn't gone away. I don't know what to think?!?!? It's size has reduced, but it's still there. Also, I don't think it's a pimple because it's at a spot where I never have gotten pimples in my life before.

I've gotten several hot spells throughout the 5 weeks post op, but there not consistent. Maybe it's just me when I try to do my physical therapy movements to the max. These hot spells and pimple thing were the only odd symptoms I've experienced, until Tuesday, that I started to get a soreness behind my nose. This soreness only comes in the morning and diminishes throughout the day. I don't know if I'm freaking out for no reason or if there's an explanation for this.

I emailed Mr. Boeree, but he's in vaca. It's been 3 weeks that I've been waiting...

Sandy, how are you feeling? What are your plans?

[laid up doc]

speedyralph -

can't say that none of your symptoms could be related to the implant - but that spot to me looks more like an ingrown hair or little area of infection. hard to say w/o pushing on it and seeing it in person. bottom line - i'd just swing by your PCP's office. Mr Boeree can't help you with that.

if you are interested in knowing if you have reactions to the metals in your disc - you can have this done through Orthopedic Analysis in Chicago, IL. you can do it just to the metals in the disc or have a panel done. any dr can order it and you send the blood yourself.