Spinal Fusion, Steel Rod and Metal Allergy

Scoliosis spinal fusion x-ray

Stainless Steel Rod Fused to Spine

Believe it or not this is my spine. I was 14 when this was taken and the proud new owner of a stainless steel rod fused to my scoliotic backbone. I have renewed interest in these X-rays because I’m considering the effects of metal inside the body. Does it corrode? Do bits end up in cells in your blood, floating around, or settling in your tissue?

The surgeon who performed this fusion retired from the Hospital for Special Surgery in New York City years ago. So I emailed his replacement, Dr. Boachie. I asked him what the harrington rod was made of. He wrote back: “Stainless steel (nickel, chromium, iron). No Titanium.”

When I wear stainless steel earrings my ears get itchy, but it’s tolerable. What do allergenic metals do inside a body?

There’s a test called the MELISA test that I will probably do soon. Your doctor can order it. You give blood, send it to a registered MELISA lab with a list of metals you’d like tested, and you can find out which you react to. I will test for nickel, chromium and iron. Funny, because my most recent bloodwork showed me as high in iron and my doctor and I are trying to figure that one out.

Here’s what the MELISA site says about nickel:

Nickel triggers more hypersensitive reactions than any other metal – up to 15% of the population suffers from some form of nickel allergy, mostly women. Nickel is exceptionally common: in cigarettes, jewellery, buttons and in coins (including the Euro). It may be found in dental restorations, prostheses (hip, knee, cochlear and cardiac implants), colour pigments, cosmetics, stainless steel cutlery and pots.  The US Food and Drug Administration has issued a warning that patients who are having stents fitted should discuss metal allergy with their surgeon prior to having a stent net fitted. While nickel allergy may present as a rash or localised contact dermatitis it may also have systemic effects including chronic fatigue and muscle pain and widespread skin conditions.

Professor Vera Stejskal is the inventor of the MELISA test. She was formerly head of Immunotoxicology at Astra Pharmaceuticals (now known as AstraZeneca), where she helped to develop a multi-billion-dollar stomach ulcer drug. She left Astra in 1996 to work full-time on MELISA and now she’s Associate Professor of Immunology at University of Stockholm. She gives lectures and is author of many metal allergy articles.

If you, dear reader, happen to have any experience with allergies to metal, or if you have a metal implant that you sometimes wonder about, let us know about it. The MELISA site has patients’ stories that describe people losing symptoms after removal of their hardware. Since the rod has most likely grown into the bone this won’t be an option for me but I’m confident there will be another solution.

________________________

Related Posts:

Calling All Harrington Rod, Spinal Fusion People

Spinal Fusion, Steel Rod and Metal Allergy

Tags: , , , ,

62 Responses to Spinal Fusion, Steel Rod and Metal Allergy

  1. There are alternative scoliosis treatment options besides surgery. If a patient decides to go the surgery route it’s important that all questions and concerns be answered beforehand, including questions regarding the materials that will be used. Different people can have different reactions to the materials.

    • Fajr says:

      O.M.G! I don’t know what took me so long to look for scoliosis support groups! At anyrate; I had a double Harrington rod placement back in 1988. My surgeon was Dr. Peter V. Scoles of University Hospitals in Cleveland, Ohio. I applied for disability, my mom applied for me, not long after the surgery and was denied. I applied in 2001 after a serious car accident and was denied. I applied in 2012 and was denied. I am currently in the process again. I am 38.

      Along with the pain after the surgery, which has mounted to over 20 years, I have a lower lumbar herniation, sciatica, swollen ankles, carpel tunnel in both wrists, a rotator cuff injury, hairline clavicle fracture and an ac separation all in the left shoulder, grinding in my c-spine & l-spine which puts me in constant pain. And I have constantly been denied. I work, but I only work part-time at minimum wage because I have an 8 year old to take care of. If my manager wasn’t so understanding, I would be in serious trouble.

      As far the metal situation; has anyone had issues with:

      1) not being able to wear watches
      2) setting metal detectors off

      I haven’t read everyone’s post, but I thank you for being like me. ♥

      • Amanda says:

        I was told that I might set off metal detectors after my surgery, but that didn’t happen. I never wear a watch so can’t answer that one. Thank you so much for being here. You are among friends.

      • suzy says:

        PLEASE get yourself a lawyer for your SSDI case!! Back problems are the HARDEST ailment to get Social Security to approve and a lawyer is an absolute essential element in being approved! Good Luck!

      • GH says:

        I can’t wear most jewelry, same goes for watches. The symptoms are swelling, itching and rashes around and underneath the metals (they range from nickel to copper to 24 carat gold). If I have to wear a watch I tape the back of it over so metal doesn’t touch my skin. I did recently find out that I can wear a titanium bracelet, so far. without issues for the past few weeks-that is extremely unusual.

  2. Miki Teer says:

    Hi,

    I’ve actually been wondering if I’m allergic to my instrumentation. Granted my surgery was in March 2011 so I could still just be recovering, but my pain and fatigue levels have gotten worse not better. I feel like I stopped recovering around month 6. I keep getting MRIs and CT scans to see why I am in such severe pain and why I feel so weak. My legs and arms both go numb randomly. So far they have found nothing. I don’t know if nickel is in my instrumentation, but I know there is titanium and cobalt. And if nickel can cause those problems, I would imagine any metal could. Any information any can give me on this would be great. My doctor has mentioned a few times that the last resort treatment would be removing everything.

    • Amanda says:

      I’m sorry to hear about your not feeling well. Is the pain different from what it was like before surgery? That could give a clue as to what’s happening. I know that titanium is definitely problematic for some people. What was the surgery for? In the next month I will be sending blood to the MELISA people in Germany. They test for allergies to different metals. They choose which metals to test by taking a detailed history of which you were exposed to. In my case, nickel is in my rod, so they’ll test for that, and thimerosal was in my contact lens solution in the ’80’s and ’90’s, and mercury was in the fillings I had taken out (but I know I have high levels of that because of two past provocation tests, something that I don’t recommend doing). But they are also testing aluminum, lead, cadmium, titanium dioxide, chromium, and some others. Why don’t you contact Becky Dutton at http://www.mercurymadness.org/default.aspx. She works with MELISA and knows a lot about mercury (and how it can cause scoliosis). Please keep in touch and let us know what you do/find out. You can get to the bottom of it!!

      • Mary jo bass says:

        I have has four spine surgeries at the hospital for special surgery. My pain has been worse each time. I have hardware throughout my entire spine. My pain level is a 10 plus 24/7 . Several months ago the nurse at HSS recommended metals implant testing. I did the research and found Melisa and tested positive for molybdenum. The Dr. Confirmed that I did have that in the hardware but he did not want to remove the hardware until two years. He also wanted other blood and skin patch testing. The other was thru lab Corp and everything was negative. The skin patch was read Monday and was positive for gold. Reaction to nickel. Reaction to a powder hydroquinone and a liquid antibodic gentamycin, which is used in the bone cement for fusion. I continue to be in pain and do not know what to do. I also test with high level of all metals thru a hair analysis. I can not get my doctor to under the urgency of what I am experiencing. I have told them I feel like I am begging for my life. Amanda, Who is your doctor and can you give me a number? The doctors do not want to believe in allergies to hardware. The allergist at Duke said the neurosurgeons do not rely on Melisa testing but they rely on skin patch. It is my understanding the only was it to remove it and then there is no guarantee. Thank you so much.

        • Amanda says:

          Mary, your situation sounds so challenging. My doctor retired and Dr. Boachie took his place. i saw him 20 years ago. Did you see him? I hear good things about Dr. Cunningham too. Have you tried him? What does MELISA suggest? Can you call all doctors who do this type of surgery, and get referrals from their spinal fusion patients so you can see how the doctors did, and then see who might be willing to help? I know allergy exists and needs to be addressed in many of us. Please let me know how else I can help!

          • Mary jo bass says:

            Thank you Amanda. Yes, you can tell me how to get help from Melisa. My surgeon didn’t order Melisa. I found them thru research and was convinced that was the way to go getting down to metals allergy results. My family doctor had to send a copy of his medical license to the lab in New Jersey that is approved to test for them. When I got the results, I tested positive for molybdenum, which is in the chromium cobalt rods. The surgeon wanted a second blood test from lab Corp and every thing tested negative.. I was told by the allergy doctor at Duke that doctors do not recognize Melisa testing. I was furious. Help…

          • Amanda says:

            Hi Mary Jo. Have you spoken on the phone with MELISA? What do they say? I know they talk with people who have your kind of story often. Their website is http://www.melisa.org/. There is also a woman named Becky Dutton in England who helps people like us. Her story is here: http://www.mercurymadness.org/files/Becky-OCCUPATIONAL_EXPOSURE_5.pdf
            Give her a call, and find out what MELISA recommends, and then write us back if you can. I am sending you love and healing Mary Jo.

  3. Janice Plecha says:

    My surgery C3-C7 fused was in 2010. For about 4 months now I have had hives break out whenever I wear any type of necklace. I have titanium rods and screws. Could my hives (on my chest and inside wrists be because of my implants? I never had hives of any kind before now.

  4. Cheryl Dwyer says:

    Amanda – does MELISA only have labs outside of USA? We are in Boston, my soon to be 16yo daughter had scoli fusion May 2010 – never been pain free. Last year a tumor at bottom of spine was found so they thought maybe that would clear pain – never did. She is in worse pain now. All over her entire back. We went to surgeon, refuses hardware removal, sent us to director, who asked if she ever had problems with pierced ears – yes, twice we had them pierced, both time resulting in severe inflamation and infection. Her surgeon response was well those were stainless, she as titanium, cobalt and chromium. But when I looked up her system – VIPER, its alloy too. She has had another spine surgery 6 years ago to detether her so her medical history is clouded with other spine issues but this is all over back pain I am getting her tested outside of the surgeons. Going to primary to order the blood work and get metal toxin test. there is a lab in US that does it too – Genesis.

    • Amanda says:

      I just checked their website and there is a MELISA lab in Wisconsin called Pharmasan. I sent my blood to Germany, because my contact in the U.K. knew that Professor Stejskal herself was going to be there for a few days and she managed to look at my sample. My results were very surprising – negative to all 11 metals tested.

      But in your daughter’s case, it sounds like you’re on to something if she had such terrible reactions to metal earrings. Earrings make my ears itch, yet I didn’t test positive to any metal, so I think it’s very individual.

      So sorry to hear about the rough time you and your daughter are having. I know that my mercury/spinal fusion knowledge contact in the UK would be happy to hear from you. She talks to people like your daughter every day. Please email Becky Dutton at beckydutton@mercurymadness.org. Please let us know how you do!! I’m sure you will get to the bottom of it.

  5. kim says:

    My Daughter had spinal fusion in 2009 she has stainless, she has severe tmj now for the last year.Alot of inflamation,It makes me wonder if it can be reaction to instrumentation.

    thanks,kim

    • Monica wiley says:

      My 21 year old daughter had surgery for scoliosis in 2009. 2 rods, 18 bolts. Almost immediately she developed acne around the scar. About 3 years ago she started having problems with inflammation in her joints. Now it’s in her jaw. She has been tested for RA, lupus, Valley Fever, Fibromyalgia…..they even did “exploratory”surgery on her elbow, which created additional problems. I’m not sure what metal is in the rods and bolts. I have one of the bolts (I made the doctor give me one). Is there a way to test the metal? If her blood is sent to one of these labs and it turns out there is an allergy problem, what can be done? Will her health problems get progressively worse? Can the bolts be removed, if not the rods? Don’t they test for this beforehand? It never occurred to me to ask these questions before the surgery! Can someone please direct me to more information and help? Thank you

      • Amanda says:

        They don’t test for allergy beforehand, I don’t believe. They didn’t back in 1984, when my surgery was done. My MELISA test showed no allergy to 11 or so metals, which surprised me. I would turn to MELISA first with these questions, as this is the type of work they do. I am sorry to hear about the time your daughter is having. But don’t think in terms of it getting progressively worse, as I am sure there will be ways to help her! I think I wrote an email three or so times to the surgeon who took over the practice of the surgeon who did my surgery before he finally wrote me that the steel harrington rod had iron, nickel and chromium in it. I know that these can be toxic. So it’s important to research all we can about how to help the body excrete what it can. Please keep us posted.

  6. jwilde says:

    My husband had cervical fusion 9 years ago – titanium plate and screws. Three years post surgery he developed autoimmune symptoms (lupus like, fibromyalgia, etc. and chronic neck and joint pain) – they came in “flares” lasting about 2 weeks. He then got headaches so bad he tried a rhizotomy which did not work and resulted in 3 years of chronic over all pain and lots of meds. Unable to work. Pain settled down to “just” a constant severe headache. He had a cortisone shot /occipital nerve block 10 days ago and now has severe muscle spasms all over. He had the MELISA test and it came back very close to positive for titanium, but just short enough to call it inconclusive. I am convinced he is allergic to his hardware and when these procedures are done his nerves are exposed even more to the particles and he has these horrible reactions. I would like him to get the hardware out, but don’t know where to find a good surgeon (since we moved from original fusion state) where we are at who will do it and do it well!!!

    • Nancy says:

      Hi. I just had to write and tell you that your husbands experience sounds identical to mine. In February 2008 I had a 2-level ACDF (fusion of C5/6 and C6/7) with titanium plate and screws. The surgery helped with my pain from the herniated disks but within months I started developing “arthritis”……or so I though. Long story short, it wasn’t until 2012 that I got a doctor to take me seriously and sent me to a rheumatologist. I was tested for everything and diagnosed with Fibromyalgia. I have suffered so much in these past 5 years, and called a hypochondriac for it. Needless to say I ended up being forced to see a psychiatrist because of my “depression that was causing my pain” even though I tried to tell them it was the PAIN causing my depression. Everything got so bad that last August (2013) I had to stop work. I convinced a surgeon to do a MELISA test on me and sure enough, I was positive for nickel, gold and chromium. My implants had nickel in them. The C4/5 disk had herniated so they went in to fix that 2 weeks ago and at my request, I asked the surgeon to remove the old titanium hardware. What he found was really scary. The metal plate was covered in a black mass of tissue. He had to excise it all out and even grind some black staining out of my bone. This was all sent to pathology but I have not heard the results of that yet. I woke from surgery and immediately knew my head pain and double vision was cured. My achy body and joints felt better. I am still concerned that the Fibromyalgia is still with me and wonder if the corroding metal has damaged my central nervous system permanently. I am looking for a doctor that may specialize in this area. I wish your husband all the best as I know exactly what he is going through. God bless him. PS~ If your husband does have the hardware removed, make sure the surgeon saves it and doesn’t throw it in the trash. Analyzing the condition of the implants is important in discovering if it may be affecting his health.

      • Amanda says:

        Thank you Nancy for sharing your incredible story. Not many of us have been able to remove hardware and actually see its state. Do you still have it? I want to see a picture but am also scared to ask for it! It may not be good for those of us with hardware still in place to have a visual of any corroded or blackened rods. But of course we also want to know.

        I am not having my rod taken out, because it would be far too risky. I do have stiffness in my body that I am trying to figure out. My MELISA test showed that I am not allergic to any of the 11 metals tested, which made me wonder if the results were accurate! I am continuing to research and experiment with substances like diatomaceous earth and modifilan and others that have been shown to bind with and encourage excretion of metals like mercury and aluminum.

        Have you heard the results of the pathology lab tests?

  7. Tara says:

    My name is Tara, and i had the scoliosis surgery 10 years ago, 3 months after my surgery my retinas began to swell, after the years i have been displaying autoimmune symptoms ranging from blindness, numbness in arms, inflammation of the intestines, to numerous other inflammation issues, i am currently being treated with high doses of prednisone on a long term basis, plus many other medications, none of which are even slightly combating new symptoms from arising, i test negative for all testable autoimmune disorders. my life is litterally on hold. I dont drive, i cant read or sit or stand for long periods of time. I really am begining to think this is all my rods. i dont wear earings because they always get infected…. is this more common that i thought? and who do i see to remove these rods?

  8. Lisa says:

    Hi. I have had my harrington rods titanium alloy for 38 years, 2 years after implantantion the top of the rod broke, the clamps broke and remained attached and the bone fusion collapsed. They repaired the top of the rod and redid the bone fusion. I have lived with various degrees of pain since but it seems to be getting worse now and is really impacting on day to day life. As i live in Australia its proving for me to get any information on metal fatigue and corrosion issues. Any information you can help with would be appreciated as this point in time no one seems willing to explain to me what i may be looking at with this. Many thank yous

    • Amanda says:

      Hi Lisa, thanks for writing. I am sorry to hear that you’re having trouble. Read through these pages, especially the Contact Me page to connect with others who come here. My rod hasn’t broken and I don’t have pain but I used to. Postural alignment has helped a lot with the inequality from side to side. I get stiff if I don’t move. Pain for me that I’d had for seven years left for good after spending time with Dr. Sarno’s book and methodology. For broken rods I’d see doctors until you find one you really like and feel good about. Please post with any questions and know you are not alone!

      • Lisa says:

        Thank You for replying. I’m having at a loss as to what to do. Pain Management doctor told me that they wont do anything surgically til the rods start corroding. Thank you i will check out that page you suggested.

  9. I had two spinal fusions recently, a C5-7 and L4/5. I have an allergy to metals, nickel being one of them. I told this to my surgeon, but no test were done before the fusions. For the last month I have hives in the back of the neck and in the lumbar regions. The skin feels like leather and itches so badly, nothing helps. I also have edema in the areas. I had my last post op with one of the PA’s and he didn’t seem too concerned when I told him. Any recommendations?

    • Amanda says:

      Look into MELISA testing, and call them to pick their brain about this. I’m sure they hear this type of reaction a lot. See if the MELISA test shows that your blood is reactive to nickel, titanium and other metals that make up the rod/instrument. Good luck. I feel for you. Please let us know what you find. We are sending you positive and loving energy.

  10. Robin m says:

    I had my 1st spinal fusion in 1989. Just under 2 years later, I developed a severe infection that ate a whole through part of my incision. I was told my body was rejecting the metal and had to have it all removed. I have never been tested for metal allergies but I can’t wear earrings and have to have my wedding ring dipped every so often because once the gold starts wearing down and reveals the nickel, my finger will get a rash. Wish I had known before the surgery.

    • Amanda says:

      I do think it’s possible that you can have a skin reaction to the nickel or whatever metal it is in jewelry, and yet be okay with the rod inside the body. But then again maybe not. Nickel earrings irritate my ears a bit, yet I’ve not had any indication that my rod, which is part nickel, is causing a problem inside. However, maybe it is!

      Your severe infection sounds major. Did you get anything removed? Why did you do a second surgery?

      Soon I will write up an interview with someone who has had the rod removal surgery and is doing very well.

      Good luck and thanks for writing in.

  11. Shauna Monkman says:

    Thank you all for these posts. I had 2 stainless steel rods put I my spine fromL2 to T2 in 1993. Over the years I have suffered from a host of auto immune diseases which include fibromyalgia, chronic fatigue, lupus, reactive arthritis etc. I have also struggled with parasitic infections: it seems my body has a lot of trouble kicking out toxins. Over the years my hips have gotten progressively stiffere and I have near constant left shoulder, neck and jaw pain. Due to the fact that I am hyper sensitive. I cannot tolerate pain meds so rely on alternative therapies. I have spent a fortune on doctors but until recently never made the connection to my rods…mainly because each time I asked the question I was told I was being ridiculous. I am wondering if I should have the rods removed…but am terrified by the idea of another surgery and any number of ‘what if’ scenarios. I am based in New York and would be so grateful to connect with anyone who has removed their rods: what did you do pre and post op, who is the best surgeon, what happened to the spinal curvature, etc. Thanks:-)

    • Amanda says:

      Hi Shauna, Good to hear from you. I had my surgery done in NYC. I have heard that there is a great doctor at the Hospital for Special Surgery who can do revision surgery if necessary for you. Soon I will write a post about one woman’s experience with this. It was very successful.

      What is your rod made of? Mine is stainless steel, which is an alloy of iron, nickel, chromium. I am currently on my third month of detoxing metals like mercury and others. I am feeling better and better. Perhaps this would help you as well. Sounds like you’ve been through the mill with the fibro and lupus. There is hope! We can talk if you’d like. Also, look into the MELISA test for allergy to metals. That could be very helpful for you. Turns out I am not allergic to any metal (13 were tested), so maybe that’s why I’m doing well 30 years post-surgery. Keep us posted!

  12. Helen says:

    Wow I am so glad I came across your page Amanda – 7 months ago I had a 3 level ACSF with a product called C3 Spinevision.

    I have received my MELISA results today showing a severe allergy to nickel. Each company has a responsibility to produce what is called a MSDS stating all components in product. Ive battled for three months now to get my Neurosurgeon on board and also find out composition of product.
    My product has an applied coating but it is not stated and a % of this products metal is called ” other”
    My symptoms have been ringing ears, nauseous, weight loss, rashing, chronic fatigue and constant headache and joint ache.

    Im a 37 year old with small boys who prior to surgery I worked 40 -50 hours a week and had an abundance of energy – these days I can just about get through a day.

    Ill let you know how my journey progresses Helen x

    • Amanda says:

      Hi Helen, Please do let us know how your journey goes. I think it’s great that you are taking big steps in figuring out what is causing your symptoms. Sounds like the MELISA test has been helpful in getting to the bottom of things. Could their office offer more input on how to proceed? Did you get the ACSF because of pain or…? Thank you so much for writing and keep us posted.

  13. Kathy says:

    I am told that I need cervical fusion, and that a pure titanium plate will be used. I believe there is a little alloy coating that may contain nickel in the screws that hold it in place. I have had a patch testing done (on my back), and while it showed no problems with Titanium, it did show a strong allergy to Nickel. The nickel created a very itchy and painful spot on my back that required a prescription steroid cream to get rid of. None of the 3 surgeons I’ve spoken with seems to think I will have any problems with the Titanium equipment for my neck, but I’m concerned about potential for Nickel in an alloy coating. I’m wondering if anyone else has any feedback on this (including anyone who has a similar circumstance and was fine)?

    • Amanda says:

      That itchy area on your back from the nickel doesn’t sound good. Can you look into getting the MELISA test done? Give them a call to see what they would say, and let us know what you find out! I do know that nickel earrings make my ear lobes uncomfortable so I end up taking them off, but there is nickel in my steel rod and I don’t have local pain or inflammation on the inside where the rod is, or on my skin. So you may be okay, but see what MELISA says. They are in England.

  14. Diane says:

    Surgery Date: May 22, 2014 – Virginia USA. Spinal Fusion at L5-S1. Pain prior to surgery is gone. But the area around the lower back center – triangle area – of pain, you can see it is enlarged (swollen) constant pain. Going for CT myelogram on Wednesday. My Pain Management dr (going to him up to surgery for constant pain in low back). After surgery week 5 saw Pain management Dr – gave me shots. 2 weeks later he gave me more shots – Surgeon gave me steroid pack and took X-rays. PA Dr. say there is chance that I am allergic to the instrumentation (specifically the screws). The area of my pain is right where the screws are. After myelogram on 10/22, we will determine if I go to neurologist for second opinion or have surgery to remove the screws. I asked what they would do and she said “remove it”. When I asked what they would replace it with she stated “nothing”. First neurologist did some nerve testing which showed that I issue with nerve impingement at L5-S1. The pain prior to sure is different than what I am experiencing now. Xray prior to surgery shows to hernias but not as bad as the one they did surgery on – they think they will heal on their own.

    My pain management Dr says I should not be in pain like I am 5 months after surgery and require more medicine that I needed prior to surgery. They say it could take about 2 years to for the impingement to heal. If I am allergic to the instrumentation they will remove it. My surgeon used Titanium mostly. I will check the surgical report to determine what else if anything other metals were used. I was diagnosed last year with Autoimmune Immune disease – Low IgA and LgG (no specific name for the auto immune disease has been determine. I am also an anemic and my anemia is not caused by lack of Iron (my dad and brother are also anemic – not caused by lack of Iron. My daughter also has autoimmune disease – she has CVID and IBS.

    I can’t even fathom that I might have to have another surgery to remove the screws. I wonder if they have to do surgery – would it be inpatient surgery and another 6 weeks out of work. Anyone else out there have similar issues?

    • Amanda says:

      Hi Diane,

      You have had a rough time of it that’s for sure. I know it’s expensive but can you get the MELISA test done? It will test for metal allergy. Titanium works for some, but others are highly allergic. We are all different. Definitely have your own copy of what metals are in the rod/screws. The pain and swelling being localized where the screws are is highly telling I would think. The MELISA people talk with people who are having similar issues all the time. Please let us know what you find! I am sending you healing energy and strength.

  15. David says:

    I had a Harrinton rod, spinal fusion, similar to what you had. Mine was done in 1979! For most of the 30 years following, I was doing quite well. Able to snow and water ski (slalom course!) January 2011, I did some aggressive stretching at the gum and 2 days later I had a horrible reaction and due to the muscle spasms in my back and chest, I could not breath. After that, I developed what was diagnosed as Rheumatoid Arthritis. That was subsequently (3 years later) called reactive RA (since I did not respond to any of the drugs: Methotrexate, plaquenil, Enbrel). I am on chronic prednisone to prevent flareups. I went off wheat and that improved my symptoms tremendously, however, I still get flareups and am prone to fatigue. I have asked my doctor about the Melisa testing to see if I am sensitive to the metals in my rod. I will let you know the results. If they come back positive, I will seriously consider having them removed. BTW, I am developing flat back syndrome and have chronic pain and sciatica down both legs. Almost had the fusion for my lower back 2 years ago, but have been able to avoid that for now.
    Thank you,
    David

    • Amanda says:

      Thank you so much for writing David. I would be interested to see what Melisa the test shows. I do know a woman who successfully had her rod taken out, so it can be done. Please let us know what you find out. No one should have to live with pain. How great that stopping wheat helped. Hopefully you have removed all gluten as well. Here’s to you feeling better soon.

  16. Linda Dunn says:

    I also had a Harrington rod fusion in 1979. I have had my migraines get worse over the last two years to the point where they are now chronic and I am going to pain management. I have researched metal allergies a little bit but I was wondering if the metal allergy may be causing my headaches to get worse. Does anyone else have headaches that you think may be do to your rod?

  17. Aubrey Henderson says:

    In 1963 at age 15 I had a harrington fusion done in London Ontario , Canada by Dr. Kennedy . I had two rods bone grafted to my lower spine , bone taken from my hip.My scar is from my upper back to my tailbone . I was on a stryker frame for 12 weeks followed by a brace for 1 year . I was told to do no lifting so physical labor should be avoided . Well at 19 I became a paramedic and worked for 31 years and have never had any issues with my back .. Due to the lifting in the job I have bent my rods and they are out of the clips but bone grafted in so everything remained solid . When I have an x-ray for chest , shoulder ect the radioligists freak but I have never had any issues of any kind (LUCKY ) .I am now 66 years and in very good health . Thank You

  18. Margo says:

    Anticipating spinal fusion and having gone through the special metal allergy testing, which I tested “severely allergic” to, I would just like to note that my allergist told me ALL testing is only 60 percent accurate. So, even if you test negative for a metal, like titanium or nickel, you still have a 40 percent chance of an allergic reaction to it! I wanted to share this because it is particularly noteworthy and no one else has mentioned this.

    I have decided against surgery. My health/life is already severely compromised and I cannot afford any further complications. I just could not handle any of the additional issues that have come up in this forum. I am very grateful for the input of everyone. You helped me make the final decision.

    • Amanda says:

      Thank you Margo for adding to the conversation. I think surgery can be helpful of course, but it has its consequences too. I hope people who read these pages can find some sort of guidance, as you did…not necessarily to answer specific questions, but to see what others with rods and fusions have done, and how they’re fared, and what’s helped them. I do know from experience that if our bodies are compromised by fusions and metalware, then self-care is extremely important. As I write often, when I do my Egoscue alignment exercises my body feels better. Gravity pulls our body parts into compensatory positions, so self-care is one way out of that. Thanks again for sharing your story.

  19. Margo says:

    Thank you for your thoughtful reply.

  20. mandy says:

    I had titanium alloys harrington roads in 2010 with TM400 tantalum cages .I have tested very allergric to Nickel from MELISA after I found out about Melissa this year.. Ive been in severe chronic burning pain in groin ,at T2-L2 (harrington rod) , headaches and exhausted.My Middlesex surgeon (shame on him) has refused to consider he should review my situation and told me there was nothing he could do. He has refused to send me my operation notes either-despite a letter from my GP. i cant find Nickel in the titanium alloy rods. I also showed high levels of chromium arsenic and tin in blood! Becky Dutton has been amazing as have Melissa in trying to help. Does anyone know if you can get Nickel from Titanium alloys? I cant find anything about Nickel in cages either. I can no longer wear jewellery.
    Thanks so much for any help given
    Mandy

    • Amanda says:

      Mandy – I bet if you keep looking there will be a doctor who will help. I know of a doctor in the US who someone really liked for her revision surgery. It’s crazy your surgeon won’t help but don’t let that deter you. I am so glad Becky has helped. I have talked to her a few times a while back. I will ask around to see if there is nickel in titanium alloys. I just checked MELISA’s site and it says that ‘Several studies show that titanium alloys contain traces of nickel as a result of the production process. This can pose trigger health problems in patients with nickel allergy, and also mean that a reaction may be falsely attributed to titanium itself.’ Please keep us posted!

      • mandy says:

        dear Amanda
        Thank you for your response. I have since found out through manufacterers (MEdtronic) that cobalt chromium screws contain nickel.interestingly my blood results showed very high levels of chromium and increased levels of cobalt. So it would suggest that somewhere these screws could have been used.It has taken 5 months of correspondence ,my GP involvement and MELISA input(Julia is awesome) plus Becky Dutton to get surgeon to open up and send us the components list.However he advised us (through his secretary) that we would have to find out what they were made of as “he is not aware of this” (direct quote from secretary!!!!)likewise it took 5 months and my quote re Freedom
        Of Information Act 2000 to get him to send us the operation notes! I absolutly believe that orthopeadic surgeons MUST be aware of WHAT they are putting in peoples backs. They must have that information to hand.Its simply no excuse to plead ignorance.After all you go to have highlights and the hairdresser send you away with a patch test for obvious reasons! I remain very shocked at the apathy Ive experienced .
        I have now found another orthopeadic surgeon .He is honest and admits that he is not an expert in understnading allergic responses but he is open minded and willing to review the data.He has offered to remove most of the metal work (the cages are now fused so cant be removed) . As bone is a living tissue I may devellop futher problems down the line but that will be addressed then.It will give me a chance to se if my health issues resolve which I believe they will. he is a brilliant surgeon-very skilled and very knowledgeable and most importantly willing to LISTEN . I feel very lucky and if any one needs the name of this man I will pass it on willingly.
        I have also come across a new form of carbon spray that can be used on metalwork prior to insertion to limit allergic responses (Becky Dutton shared this.She is amazing!) It carbon coating-plasma spray to VEPTR system. To late for me at this stage but might help others. Beckydutton@understanding scoliosis.org has the information.
        My nickel issue ,based on the information my old surgeon gave me, remains a mystery.However at least now I can begin to look at a healthier future. Im told my back has fused so fingers crossed!
        Thank you for your help
        Ill keep you updated.
        Mandy

        • Amanda says:

          Hi Mandy, What a major learning experience this has been for you! It is beautiful that you have found people who are helping. Becky is great. I admire you for sticking to your guns and continuing to find ways to get the help you need. It can be done, one step at a time. How great you found a listening and talented surgeon! Please keep us posted Mandy!

        • Shirley says:

          What city is your doctor in?

  21. I always wondered why a material like PVC couldn’t be used…it CAN bend a bit, doesn’t seem to cause reactions … if it caused reactions people would be sick from water (even when going through lead-free pipes!) I hate my bars by now. I fell on my back a couple weeks ago and ouch…it also makes riding my trike hard at times, because whenever I go over a bump, I feel them go THUNK!

    • Amanda says:

      Hi Briana,

      I wish I knew the answer. It does seem like something with some bend could be used but who knows. I will say though that even though it’s hard, acceptance of what is, helps us. And actually guides us to a better situation. I’m sorry you are feeling the rods (is that what you meant by bars?). I hope you are feeling better.

  22. Stacey says:

    Dr.Scoles performed my surgery in 1981 in Cleveland. I was 14. No complaints and no problems. I’m one of the very lucky ones.

  23. Nancy McPherson says:

    I have a good friend who actually needs surgery but tests show that she’s allergic to the metals. Her doctor is trying to find another option in regard to the rod and screws. Does anyone have any ideas of where I could perhaps find an alternative? She had prior surgery where a plastic disc was inserted but that resulted in a failed fusion. The doctor wants to put 2 discs in and connect them with screws and rods. Any help would be greatly appreciated!

    • Amanda says:

      Where did she get the metal allergy test done? Maybe they have ideas. I would contact MELISA and see what they say. They deal with this issue daily.

  24. Andy says:

    I had my spinal fusion 20 years ago (1996) in New Haven, CT. I was always extremely active, raced bikes since I was a kid, etc. A little while after my surgery and recovery I started experiencing severe fatigue. At first I thought it was Lyme disease or something else. It lasted for some years and I went through the fibromyalgia, chronic fatigue syndrome, lupus diagnoses and treatments (which isn’t much really). Eventually i felt normal again and I was able to continue my normal life for another 3-4 years. But then my symptoms returned. Long story short I have spent the last 20 years cycling through 3-4 year periods of normalcy and then equal periods of suffering. The “suffering” years are characterized by severe fatigue and a range of illnesses, bizarre flare-ups of random maladies, like mouth and nose ulcers, crazy headaches every day and so on. I’ll catch absolutely anything and everything going around like colds, flus and viruses and it takes forever to rid myself of them. I’d say I have maybe a couple days a month where I can really exercise or feel ok. And for someone with so much energy it’s beyond words being stuck like this. I go from being able and enjoying being able to exercise and just use my body for more than 10 hours a day to being nearly crippled. I’m always fighting off depression during these years. I try to be happy that it’s not constant for my whole life and that I have essentially half my life to enjoy on my own terms but it’s still beyond frustrating.

    Anyways I’ve come to the conclusion that these rods are my source of angst and I’ve yet to meet a doctor who would even think of opening me back up and removing anything. Thanks for all the info here and I might check out MELISA.

    • Amanda says:

      Hi Andy, yes please check out MELISA, if even to touch base with people who know what you’re going through. Check out my recent post on chlorine dioxide too, as I think that can help you keep the flu/viruses/colds at bay. I used it for my son the other day after he had a night of throwing up, and he slept and then was fine. Others take days to recover from such a stomach bug. CD works. It’s interesting your illnesses come and go. But I’d also look into fermented foods like homemade sauerkraut, and a book called Autoimmune the Cause and the Cure, by a woman who had a really tough time with Lupus for many years. And recovered. Please keep us posted Andy.

    • Holly says:

      I’m reading your post because I have the exact same symptoms happening to me and was just told today that it might be due to my CD rods. I’m shocked at how many are experiencing the same symptoms. I just called my doctor to ask what my rod is made of and he didn’t know. He said to call the company. I’m getting an MRI and Spinal tap this coming week. I’ve had symptoms of Lyme and they thought lupus, Chronic Fatique, etc. I used to be SO active. I ran 6 to 10 miles a day and now nothing. I have one good day followed by the usual 3 exhausted days. Then I’ll feel good for a few months. It’s so weird. I’m desperate to figure out why. I don’t have screws but I have metal cross links and hooks. My doctor said he’s never heard of any bad reaction from this. I don’t trust most doctors anymore after being told I had lupus for 2 years. Ends up I don’t have lupus. I trusted my gut and finally went to the top Lupus doctor in LA. They’re stumped. I can’t have my rods removed. I also have liquid in my lungs. Another head scratcher for my doctors. I’m finally going to a great doctor at UCLA to get this figured out.

      • Amanda says:

        Hi Holly. Don’t worry you’ll figure it out. I find it’s important to take deep breaths and know all will be okay. I think it’s great you like your UCLA doctor. Your illness might not have to do with the rod – I”m not sure that mine does. I do know that detoxing is so helpful. Soon I will write an article about the sauna detox I’ve just started and we’ll see if it’s something that might help you…I send you love Holly. Keep us posted!

Leave a Reply

Your email address will not be published. Required fields are marked *