Problems After Surgery (Possible Metal Allergy Post Cervical Artificial Disc Replacement)

[sandy]

Hi my name is sandy and i had cervical spine surgery on c4 c5 artificial disc, now haveing problems still 11 months and may have found why, dr is saying i may have allergy to the metal. This if so is causeing alot problems for me. Just wanted to know if anyone else has had this problem and what symtoms they had.

[Katie]

Hi Sandy and welcome to the forum, but I'm sorry for your circumstances.

Could you tell us why the doctor thinks you are allergic to the metals? What are your symptoms and what ADR is it?

Unfortunately (or fortunately), you are probably one of the few with this issue, and I have complete empathy. Without the wisdom from this forum, I would be in the same spot right now. There was someone here who picked up on my comments about being allergic to most jewellery and having new food and environmental issues. She related a story about a woman with those problems from England who had to have revision surgery because of it.

She gave me the name of a university lab in Chicago (Rush U.), (here's the link - metal allergy testing ) and after sending away blood samples, the results revealed that I was severely reactive to six of the most common metals used in surgery. The lab said they had never seen anyone as allergic to nickel as I am, or to as many metals at the same time. (Aluminum, cobalt, chromium, vanadium, etc.. The surgical titanium used in almost every ADR is an alloy made with Aluminum , not PURE titanium ) With as many problems as I was already having, resulting in anaphylactic reactions and rides in ambulances, the blood test probably saved my life.

Here is more contact information... Marco Caicedo, Ph.D
(312) 733-7121
www.orthopedicanalysis.com

mc at orthopedicanalysis dot com (If I've confused you with this...I've put in 'at' and 'dot' to protect against scammers. Just replace them with the normal signs and pull out the spaces )

Marco is wonderful to work with. They started testing when artificial joints became popular, hips, knees, etc. and now are doing testing for us spineys

As a result, I had to cancel a surgery close to home (a good move in the end) and start looking internationally for non-metal appliances. Thankfully I found them with Dr. Luiz Pimenta in Brazil, who helped develop the NuVasive NeoDisc for the cervical levels. I had it put in my C5/6 in March 2010, plus two PEEK plastic 'cages' at L4/5/S1 with minimally invasive fusion with no metal reinforcements at all, no screws, rods, etc. The NeoDisc is a rectangular piece of silicone covered in mesh that eventually becomes embedded/grows into the adjacent vertebral bone surfaces (I had four carbon fiber screws on the sides to hold it in place)

Unfortunately there isn't (or wasn't) a non-metal lumbar ADR at the time...I'm not sure if one has been developed since.

If you need more information about the NeoDisc, I'd be more than happy to answer your questions, and about Dr. P as well. He is a world renowned surgeon who has done some very difficult revisions on various ADRs. I can't tell you how highly I regard this man. I think Justin posted a link to the NeoDisc somewhere...(can someone find it quickly?) or you can google it as well. You can also find more info about Dr. Pimenta in the International surgery forum here.

The good news is that there is a solution out there, and I'm under the impression that it is a somewhat easier fix than a revision of the lumbar levels. I'm sorry I didn't reach you earlier. But now you can at least get the test done and confirm if this is indeed the problem. That is half the battle.

Good luck with everything. I'm glad you are here.

[Katie]

Sandy, you might want to change the title of your post to reflect the problem you are having. There may be others who will pick up on it faster and have more to add....

And hugs to you...this is a heck of a thing to be facing after you thought you had the answers. It took me almost five years of disappointments to find the right solution...I understand, as many here will.

[sandy]

Hi im sorry i dont know were to post, said to post in new and introduce myself.

anyway the disc was for c4 c5 medtronic sofamor danek cervical the doctor said mylopathy and i was good cantidate for this , but i had c56 with buldge also he said no 4and 5 my problem, went in removed spur placed artificial disc in 4 and 5, i have never been right since, swallowing problems choking, constant burning pain in the neck radiates thru shoulders arms hands fingers , constant spasms tight and painful, i cry everyday 11 months had surgery august 2010, i told the doctor if you can not help i will have to go elsewhere, finally got xray may 2011 my spur had come back, i was told surgery would remove this and i will never get spur back with artificial disc huh someone had lied before surgery i got the spur back, had gone to 2 other nureos for consult, said i had radiculopathy 5 and 6, want to fuse 4and 5 and 5 and 6 what, ok go one more doctor for consult and this dr asked about how i was with cheap jewelry and did a test on inside arms with these metal device taped to the inside arms , it wasnt 5 minutes and broke out , dr said may be my problem constant inflammtion at surgery site and may be causeing swallowing problems too, i have been to my primary with red neck shoulders collar bone area and blisters she had no clue gave me cortisone january 2011, been to ent and gi and allergy doctor who only tests for indoor outdoor and food allergys, this had been a nightmare for me, i went in to have surgery to help me and i come out makeing things worse, its been hell, also went too endocrinologist said thyroid inflamed i wonder if that was from surgery, now endo and primary think immunologic problem ,this before i saw ortho dr who asked about metal, it may be coming together why all my problems i cried hoping this is what it is. So i saw this site hopeing to find someone else who had surgery, maybe this is why surgery failed me the device or surgeon didn't do the right surgery, and why do they not test people before getting metal devices.

[Katie]

Oh Sandy Hugs to you, a big group hug.

I understand completely, honest I do. I am one of the few I know with severe reactions to so many every day things, and they started after I began taking very high levels of pain meds, morphine. It was the only one that I could tolerate...every other one either made me very ill or put me in an ambulance.

I strongly suspect that your thyroid has been overwhelmed with this metal sensitivity, along with other body organs. I guess the question is, where do you go now?

I'll only give you advice about which I know, and that is Dr. Pimenta. He was very empathetic about my sensitivities to the metals, and worked hard to find a solution. I know he has done some difficult removals of ADRs so you might want to send your details to him. It costs nothing to talk to him and if he doesn't have an answer, I'm betting he will help you find something.

The other thing I can recommend is a homeopathic doctor...a real one, not someone who has just taken a few courses. A lady in our village worked hand in hand with the regular doctors in S. Africa, after years of training. She has helped me so many times. Naturopaths may also be able to offer some help as well.

If there is anything we can do to help, please just ask. No question is dumb or small....I think so many people thought I was nuts for taking that metal allergy test, but we both know how valuable it was.

As to why it isn't more common....Marcos at the lab said they are the only place in North America that does the testing. It is a fairly new thought, doing it by blood serum I believe. While he can't give medical advice, he is able to provide stories like mine that link the metals to a lot of problems. I hope this helps.

[Katie]

Oh, and the one revision case I'm familiar with re: Dr. Pimenta, it involved the Medtronic Maverick disc I believe. I'll have to look into the details again and get back to you.

[Katie]

Sorry, didn't mean to confuse you! You posted in the right spot....I just meant that if you added to your title (as you already did), then more people might open/respond to it faster since they understand the content more.

[sandy]

HI
today i went for a consult again same doctor but not assistant this time , they taped metal to my inner arms and i broke out again and itchy ,ok maybe allergy to this device , i said can i have blood test, said no blood test accurate, what genisis test for metal ltt, doctor goes on to say ive seen too many doctors there scared to take my case, i said what, well for one i was told before you have surgery to get 1 or 2 more opinions before doing surgery so i did 3 more opions, now they want to do surgey again and i want another opinion before i do to make sure they are all on the same page and im told ive seen too many doctors there scared to take my case now this doctor says before he would do surgery i would have to see a physiologist, im in a shock, im being scolded because i went for other opinions before i do surgery, this is crazy, now im in shock and upset what did i do wrong, i asked for order to help pay for my metal blood test from genisis in illinois, hes telling me THE BLOOD TEST NOT ACCURATE, omg what do i believe anymore they have me so confused i dont know which way to turn, so i should trust that metal devices they placed on inner arms is accurate, what is wrong with these doctors , i didnt know that haveing second third opinions made me case scary to doctors . so now i have to do disco gram, ok will that tell me if i have allergy to the device , no anyone have advice because i am getting stressed out .

[sandy]

forgot , he asked well i have a metal nose ring, i said yes its hypoallergenic metal, he had nothing to say. if im allergic to this the blood test for metal would tell me, but he says there is no blood test accurate for metal testing, Is this true and the genisis test is all a scam to take 600.00 from me, please anyone let me know, did they get the blood test that confirmed this....

[Katie]

Sandy, I think you are in for the ride of your life. But you can handle it...like so many here

You are up against the same sort of BS that I encountered for almost five years. I was told that if I went for surgery out of country, that I would be blacklisted by every doctor in the province. The rest of the conversation went something like this...."are you telling me that you would refuse to treat me? Because that would be illegal." He said that nooooooo, of course not, but don't expect that the treatment would be very quick or done happily. Since I have had to wait up to a year for each referral with absolutely no treatments (and that's when I was on the 'good' list), I didn't think I had much to lose

They are trying to bully you because of egos. Plain and simple, in my opinion. The attitude in North America is very bad, to say the least. Not all surgeons are this way of course, but in the majority from my experience. Why there is such a difference everywhere else is hard to explain, but the European doctors and mine in Brazil were happy to have others' opinions.

And if this blood test is not accurate, what does he say about the people it has helped? I have had 'regular' allergy testing, both skin and blood testing for regular allergens, environmental and food, and they have shown nothing. Yet I have ended up in the emergency ward and in an ambulance several times when my throat has closed over when I've reacted to the same things they have said had no effect on me. They just don't have all the answers, and get very angry when you point that out...that they just don't know everything. It is such a pity, instead of trying to learn about new and better things.

I can't tell you that this blood serum testing is the be all and end all, but it made a huge difference to me.

As I said before, I have no doubt that the reactions I most likely would have had to the metals inside me would have done me in. The lady in England in the same spot as you used it and got the answers she needed, and a revision surgery that as far as I know was successful. The doctors here thought I was nuts....but I proved them wrong.

I know it seems like a lot of money, but if this test (under $500) gives you answers that can be addressed by surgeons that will listen to you, to me, it would be worth it. I just went ahead and ordered it myself off their website, and used the local medical lab to have the blood taken. I then couriered it to the US and they got back to me within a week. They explain everything and send you the kit.

I spent thousands that I didn't have getting answers, and while it seems impossible, it does come together somehow. We spent our entire retirement fund on my surgery, but I don't regret a cent of it. (And we will be needing it much sooner than later..I'm no young chick )

Sandy, may I ask where, if anyplace, you would have looked to find this allergy information before surgery? I am asking because I feel so badly about your situation. If I had perhaps 'advertised' this test and the need for it in a better way, maybe you wouldn't have to be going through this now. It was only because of the kindness of others here that I found out about it.

I am seriously thinking of going to the respected national publications/investigative new shows or even TV shows like Dr. Oz or something to educate people. It is not just us 'spineys' who need this...so many thousands are having hip and other joint replacements made of metals. Think of how many people cannot tolerate cheap jewellery...

As to this:

he asked well i have a metal nose ring, i said yes its hypoallergenic metal,

he is just being argumentative again. I wear all sorts of jewellery, my wedding rings, a titanium watch, a few other things. Oddly enough, I can wear 18K earrings in my right ear, but not my left...go figure. No one can explain it, but it doesn't make it wrong or impossible.

I don't know what the 'genisis' test is that you have mentioned. The only one I know about is the one from Rush University...that seems like it would be a fairly reputable institution, no??? They have told me that they are the only ones in North America who do this. They do not make wild claims, just that they can tell you which metal the blood serums react to.

Feel free to discuss this as much as you like, till you are comfortable with the answers. I know you feel lost after going through that surgery once already. But it sounds like you are young and strong. Take our experiences and keep on fighting, if that is what other well respected surgeons tell you to do. But don't let the ones near home tell you that you should not be talking to other doctors...it is your right, and your job to make sure you are getting the best care possible for yourself. But you will have to do a lot of research in reputable spots, not just leap on every site...it takes awhile to figure out the good and bad ones, but we can help sift through things.

Again, hugs to you and your mom, who sounds like she is your main support. She is priceless, as are all of our own special 'peoples' who help us in these times. Hang in there, and I'm sorry this is so long. It just struck a chord in me, just remembering a lot of frustration before I found the right answers..