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anxiety high as surgery approaches- titanium allergy is real

jmbowell1722jjmbowell1722 Posts: 4
edited 08/20/2015 - 7:25 AM in Back Surgery and Neck Surgery
This will be my 5th surgery in 5 years. If only I had known to have a simple blood tests things might have been so different..... my last surgery was January of 2014, it was my 4th and we thought my last. I had c 4-5, revision of c-5-6 and anterior L 4-5 done. I swore I would NEVER do this surgery again. The combo of the cervical and anterior lumbar was brutal for me. It took me months to recover. I had a terrible rash at both surgery sites that required heavy duty steroids for weeks that we thought were due to the surgical tape and glue used. I was exhausted and my muscles seemed to atrophy while I was out of the gym for the 6 months it took to build up my stamina, but finally I was relatively pain free....then the weird symptoms started. Strange random swelling, needing naps, being forgetful beyond normal, hair falling out, dark patches on my face. I started saw my family doc, some specialists but everything came back fine. Then in December that old familiar pain started again. I waited hoping it was in my head but in February I went to see my surgeon, had a scan and found that I had loose hardware yet again in my c spine. The fix this time was an anterior approach with titanium rods and screws to stabilize from c 4-7. Frustrated and confused I threw a bunch of questions at him- Osteoporosis, auto immune disorder, blood problems, cadaver bone rejection, there had to be an underlying condition since I am relatively young, non smoker, very active and aside from this, mostly healthy. As a last ditch, he decide to test me for a titanium allergy, saying it was very rare and highly unlikely. In the meantime, I consulted w/ a doc at Cleveland Clinic for a 2nd opinion and had the same discussion with him. I asked him if the failure to fuse could be an underlying condition or allergy. He dismissed me immediately saying failure to fuse happens, its a biological process and conditions had to be perfect in order for fusion to take place. His game plan was the same anterior approach to the neck adding titanium. A week later the test results came in and I am highly allergic to titanium- which, in hindsight also explains the swelling I had after the 2nd surgery that caused my speech problems that, at the time we thought were due to retraction during surgery, and the problems moving my tongue and swallowing after the 3rd surgery that we thought were also due to swelling from retraction. Remember that terrible rash I mentioned? Yep- probably titanium again! The surgeon also feels that the long recovery time, exhaustion and strange symptoms are all related to this titanium allergy. I mention this because I really feel it is important to know that this is real!! I wish I had known after the first failed fusion to ask for a titanium allergy blood test. Yes, it's just a simple blood test!!! It may have prompted a strange look from my doc but it would have saved me a lot of time, money and pain in the long run!! I do agree with the doc at XXXX
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that it is a biological process and certainly not all failure to fuse cases will be the result of a titanium allergy BUT I think the test is a reasonable request to rule it out. A blood test is a lot easier than what I have been through!! That being said, docs are trained to look for the easiest medical explanation and there were certainly easier explanations for all of my symptoms. I feel patients need to be their own advocates and if your doc doesn't like that, find a new doc! Mine has been fantastic and has apologized multiple times for all of this. He has always listened to me and addressed every issue I've had- if it weren't for him suggesting the allergy test in the first place who knows where I would have ended up after another surgery with titanium!! Surgery is scheduled for July 14 to remove all the titanium from cervical and lumbar and I am so nervous! I want to be done, out of pain and back to "normal"!! My doc has assured me he will do everything he can to try to affix a stainless steel (yes, I've been tested and I'm not allergic) plate in the front of my neck but due to the amount of drilling that has been done, it is possible they will not find enough bone. If that is the case, they will need to go back in on the 16th and do an anterior approach to affix hardware to the back of my neck. I am hoping and praying that does NOT have to happen!!

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2009 c5-6 fusion; 2011 c6-7fusion /c5-6 revision; 7/13 c4-5 joint replacement, c5-6 revision discectomy L4-5; 1/14 fusion c4-5 and L4-5 due to joint replacement moving; hardware removal c4-7/L4-5 scheduled 7/14/15 b/c titanium allergy


  • LizLiz Posts: 9,107
    edited 07/02/2015 - 11:27 PM
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  • rocker2000rrocker2000 Posts: 15
    edited 07/03/2015 - 10:51 AM
    what an odyssey youve been through

    youd think given how major the surgery is allergy blood tests would be more common place

    hopefully after the next surgery your on the way up again

    i think if i decide to have a fusion/adr id want an allergy test too

    thx for sharing
    1994 - herniated disc l4/l5 l5/s1 - sciatica - l4/l5 discectomy
    2011 - l4/l5/ l5/s1 herniated disc/scar tissue - sciatica - discectomy
    now - recurrent disc protrusion l5/s1, lots of back pain, considering fusion/adr

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  • CynliteCCynlite Posts: 1
    edited 08/20/2015 - 8:44 PM
    I have fatigue and pain throughout my body. Figuring it out has been almost impossible and taken many years. The worst pain has always been in my neck and head but, the systemic issues have been very difficult to diagnose. I already had 4 surgeries on my neck that did not involve hardware. I've always been concerned about fusing my neck but, just any FYI, these minimally invasive techniques created instability and further problems in my neck. I've worked with multiple artificial disc replacement doctors who say I need 2 - 3 discs in my neck replaced now. Because I feel more than just pain, I decided to get the MELISA blood test for metal allergies first. I private paid for the test. The results came back that I'm allergic to 5 out of the 8 orthopedic metals tested. Well, that was a shock! Since I have titanium screws in my knee from a surgery many years ago, I'm looking into having them removed but first I plan to see an allergist. Most the surgeons and my primary care were not very supportive of me getting the test because according to them, it's uncommon to have these allergies. I wonder about these statistics? I'm still not getting much guidance by the doctors which is frustrating. However, several of the surgeons have now said they won't do the surgery on me because of my allergies and offer no alternatives. Perhaps there are none. At least they recognize the issue now.

    I wish there was a specialist we could see that would help us navigate this issue but, so far, I have had to be my own advocate and do my own research. I'm glad I trusted my intuition.

    I wish you a healthy recovery from your surgery and hope you feel much better after getting the metal removed! Please do keep us posted :)

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  • SukhreSSukhre San Diego, CAPosts: 205
    edited 08/20/2015 - 2:07 PM
    jmbowell1722 : What surgery are you having now? To take off hardware and get fusion with allograft?

    Cynlite: How did you find a list of metals in the proposed disc? and also how do you find which test to do? Where did you get it done? Online?

    Me:Two surgeons asked me do fusion and when I asked about the allergy test both declined to write me a test for it. A third told me if you have a knee or hip replacement surgery the amount of metal is a lot. For fusion, its not that much.
    MRI shows C4-C7 severe steonosis. Pain in hand.
  • How do you do a test for titanium allergy? I am facing surgery in a couple of weeks and am worried about this. I already cannot wear any jewelry and have multiple allergies. Don't know what to do or how to get tested. Called my allergist and he told me there wasn't a test and that there was no way to tell prior to having the surgery. Please....any info would be helpful

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  • SavageSavage United StatesPosts: 7,385
    Welcome to Spine-Health
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  • Tawandra1, Im so sorry I didn't see your post until now. To anyone who reads my initial post, the simplest way to check and see if you are allergic is to wear titanium taped to your skin with paper tape or even better, coban. The reason you don't want to use adhesive is so you don't react to the sticky part of the adhesive and think you have a false positive to the metal. An allergist can absolutely do a test to see if you are allergic to metals. It is a metal panel and I can't remember if it was a skin prick test or if they were drops under the tongue and the symptoms were self reported. It's been a long time. I'm. just posting this as information for anyone else to read. The key in the self guided test would be if you have hives or itching or a rash in the shape close to or surrounding the shape of the object you affixed to your body. I would say to leave it for about 3 -4 days on your forearm. Same for dental implants! They are all titanium- just FYI.

    2009 c5-6 fusion; 2011 c6-7fusion /c5-6 revision; 7/13 c4-5 joint replacement, c5-6 revision discectomy L4-5; 1/14 fusion c4-5 and L4-5 due to joint replacement moving; hardware removal c4-7/L4-5 scheduled 7/14/15 b/c titanium allergy
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