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autoimmune reaction to hardware and need to remove

Started by jw58 on 10/30/2013 8:00pm

I was following a discussion about hardware removal and learned that it has been done and is usually an easier recovery and procedure than the initial fusion. My husband had cervical fusion done at 3,4,5 nine years ago. About 3 years after his surgery he started developing all kinds of autoimmune type symptoms - he had blood blisters on his tongue which led them to test for leukemia, he had thrombotic purpura (little purple dots on his legs), he grew overly sensitive to the sun, he developed gluten intolerance, and migraine headaches. His headaches and neck pain were so bad he tried a rhizomotmy. That resulted in three years of fibromyalgia type symptoms with burning pain, fatigue, joint pain, and headaches. Life has been miserable for him and he is on all kinds of meds. Now just after the body pain seemed to finally subside he was left with a chronic, severe headache with shooting pains in his head occurring also. The pain doctor suggested an occipital nerve block. My husband was hesitant due to the bad result after the rhizotomy, but she said that was burning of nerves, this is just a shot, so he went ahead and did it. Within two days his muscles started to twitch all over and now he has body jerks that are so bad it looks like he has parkinson's. He is hardly able to walk because of the severity of the muscle spasms. He said he feels like their are electric jolts going on all through his body. I cannot believe this happened!! BTW, the headache is gone, but at what expense!! So now, after another odd result to a procedure I am convinced, as I was after the rhizotomy, that he is allergic to the titanium plate and screws in his neck. We did a MELISA test on his blood and it came back just hundreds of a point shy of being positive for sensitivity. They said "inconclusive", but I think that it was close enough, because these symptoms are just not typical of the typical pain post fusion. I think that after three years there was corrosion of the plate and that when he has nerves exposed (through rhyzotomy and the shot in his head) his body has violent reactions to the presence of the titanium particles. So, what to do. All I can think is that we finally need to get that hardware out! We have moved since his original surgery and the doc does not want to treat an out of state person for care reasons. Would we be better off to stay in Illinois for months and use the same doc if he will do it, or should we find someone in Indiana where we live, who will. Does anyone know docs in the Indianapolis area that are great spinal surgeons and have removed hardware. I know so many folks deal with the pain and suffering that can happen post fusion. How many of you with the widespread issues have considered allergy to the hardware? I am convinced in my heart that that is my husbands problem. I would love to hear from others about any experiences you have had with widespread pain and with hardware removal. Please forgive any misspelling of medical terms.

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Hi,
I'm sorry to hear of everything your husband has had to endure and hope he gets relief soon.

I haven't had any hardware removed but I did want to let you know I also have a titanium allergy. Fortunately a few months before my SI Joint fusion, I asked my surgeon if patients were ever allergic to the implant metals. I suspected I might have a problem because I can't wear costume jewelry without having a skin reaction. I ended up getting a titanium washer from the supplier and taped it to my wrist. After a couple days I had a very red circle on my arm where the washer had been. My surgeon did not use the titanium implants and instead, used a plastic material and bone harvested from my hip for my fusion.

I also wondered how common allergies were to the different metal implants.

Best wishes to you both.

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Has anyone ever heard of allergy to the Grafton putty surgeons use to fuse you with?

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Hi,,, I'm sorry your husband is having so many problems. I've started my own research on many situations/problems/diagnosis I'm having into as what I believe now is a reaction to all the metal in my body! I am from the first surgery/fusion 6 yrs out. Finally after all my energy being depleted from fighting daily-second after second fighting the pain and discomfort,,,, my daughter is thinking I may have a toxic problem going on. We've done some investigating on our own through the internet and I'm unfortunately feeling more confident that I am suffering this problem! When I read your post,,,, I was amazed! This is my story!!!! From the description of the ortho pain/discomfort, living with a headache which regularly starts ever morning as a migraine to the muscle spasms throughout the body (spasms which resulted in having to be transported to hosp and resulting in 3-4 days stay. I was actually for a short period paralyzed which after a day-day and half I was able to move finally! I'm mad, I'm furiated and I know I'm being "poisoned" because of the hardware in my bod and now I'm on my way to finding out how to hopefully get it corrected or at least somewhat bareable to live with and have some sort of "quality" of life without a struggle second by second! I'm not really pleased with what I'm reading,,,,, having to have the hardware removed. I have neck fusion, lower lumbar fusion, wrist/hand reconstruction, two fullly replaced knees and metal in my foot and ankle. I still need a right shoulder replacement and in future another neck and back surgery to look forward to. Which with the findings right now,,, the surgeries needed are NOT an option for me any longer. I'd like to know how your husband is doing and if you can--can you please tell me the actions that took place in his situation thus far? I'm looking for anything to give me a good start,,, set me on the path to hopefully get some relief and to get a doctor that will actually admit that this may be the problem and help find alternatives to helping out the bottom issue instead of covering and masking the complaints of pain or discomfort with YET,,, another drug!!!!! If we can talk a little if you have any time, I'd appreciate a response. Thank you, DLK61

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Last year I had a two level fusion. My back is still in a lot of pain. I've tried a lot of different things like Pettibon system therapist, stretches etc. There are a few stretches that have been very helpful....
I'm a dentist and I have food allergies and seasonal and drug allergies so I'm thinking.
I know titanium is suppose to be pretty innert and non allergenic
BUT...Allergy season has come round and I think my back doesn't hurt nearly ad much when I'm on Antihistamines . It's crazy..I wonder if it's the hardware or something else they add to help the bone craft.
Maybe I'm allergic to the metal or cadaver bone?
Doctors don't want to think about it. I'm a doctor and they patronize me!

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Thank you for your post about your husband. I’m so sorry to hear about his symptoms. No one deserves to be in pain for any reason. I believe that I am suffering from severe erosive osteoarthritis and believe it is the result of a negative reaction to my spinal hardware. Have you been able to find a doctor that is willing to entertain the idea that your husbands systoms are a result of his hardware or surgical procedures? I live in California near Stanford, and they won’t even see me. I would love to hear if you had any results.

Thank you

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I had a spinal fusion of L4 and L5 about 2.5 years ago, the hardware was titanium. I was 56 at the time, in very good health , my weight
was good and felt good overall. My pinched nerve was causing sciatica down both legs and I woke up crooked each day. After shower I would usually straighten up and be ok each day.
I tried many options before agreeing to surgery. I wanted to go
Minimally invasive laser surgery without metal implant but was $20k surgery not covered by my insurance. My insurance covered
Fusion with $500 deductible. I was told laser was probably scam
which I didn’t believe. I couldn’t afford $20 K bill so I felt no other choice but to go fusion. In surgery my spinal cord was torn
and stitched up, as told by my doctors to me in recovery.
He said he would keep me extra day to make sure I didn’t have any spinal fluid leakage. I had horrible pain and shakes. I stayed
2 days extra. I was told otherwise surgery went well. The site of my surgery developed a big lump, I was told that was normal
and would eventually subside. It did some, but never fully.
It does swell on and off. Now I am developing all kinds of
auto immune type issues at about 26 months out. I have muscle spasms in both calves, shakes, involuntary muscle jerks,
Joint pain in knees, elbows, neck, clicking and popping of same joints, and mild headaches so far. I tire very easily, tests reveal I have elevated muscle enzymes and lower than normal white blood cell counts. I have been to ER once and called 911 twice
for extreme leg pain in early morning hours along with overall weakness. All this is new. I am convinced now that the Titanium or nickel in my implant is causing all these new health problems.
I will now ask for Melisa test to see if I am having adverse
reaction to these metals. I will keep you all posted. I was not warned
of these possible complications prior to surgery. From all my research there has been concern and knowledge of these possible
complications for many years prior. Not happy. At the very least
Allergy testing should be required by doctors and from
implant manufacturers before implanting a possible life threatening device in anyone. I will update soon.

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Following my L4-5 fusion I had new pain when sitting, standing or jogging and worse low back pain than I had prior to my fusion. Walking and laying down on a heating pad were the only comfortable things I could do. I also had shortness of breath which I never had prior to the fusion. I told every doctor from my surgeon, pain management and primary care physician about these new issues after the fusion. The surgeon doubted me and just kept trying to kick the can down the road by telling me how long nerves take to heal, my pain management doctor wanted to help by having me get a spinal cord stimulator (more titanium) and my primary care doctor referred me to a pulmonary specialist who after many tests concluded I had asthma. She did do some metal allergy tests but told me they were not 100% reliable for titanium. I felt in my heart I had a sensitivity or an allergy to the titanium. I told my doctors that I am allergic to gold and that’s why I can’t wear my wedding ring or watches but because it is rare, they didn’t think I was allergic to titanium. After trying and failing to get 2 surgeons to remove my hardware, I recently found a great neurosurgeon and had it done 2 years and 1 month after my fusion. He told me that he really doubted that it would help my chronic low back pain and he was right about that but I still think it’s the best thing I could have done anyway. Within a few days I was able to breathe normally again. It’s been just short of 3 months and while I still have my chronic low back pain, I can sit comfortably for meals, I can jog and I can stand longer than before and I have not needed any inhalers. Those a big wins to me. The hardware removal surgery was very easy compared to the fusion. I left the hospital and went home about 3 or 4 hours after the surgery. I took the time to share my story and I hope this helps motivate others who need to hear about benefits of hardware removal. I searched all over looking for stories dealing with hardware removal and in the end I had to trust my gut.

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Hi JW58,
Thank you for posting your experience after your hardware implant
surgeries. I have so many of same symptoms you had and more,
some you had I have not had, but I believe everyone experiences
side effects a little differently as our bodies try to fight the
metal ions circulating through the body. I have been newly diagnosed with abnormally elevated muscle enzymes, constant
calf muscle twitching in both legs, sore muscles, joint paint,
breathing issues, tight chest, congestion, lower eyelids
sensitive near tear ducts, loose stool, constantly bleeding hemroids.
My joints pop and click and knee, elbow and neck pain have
become daily issues. I have had same reluctance from doctors
and they want to put me on so many meds. I don’t drink, smoke and
I take care of myself. All these issues started about 2 years after my implant surgery. I’m getting metal testing done. I will have this hardware removed regardless of the results. My surgeon said he can remove the 4 Titanium screws and that the procedure is easier than original operation. He said my back is fused and they are no longer necessary. He said he was 99% sure my symptoms are not from the metal implant, but he also said earlier that it could definitely cause these issues. Go figure. I am 99% sure removal of this hardware will allow my body to return back to normal.
Additionally, your post gives me additional assurance. I am so happy
you are experiencing positive results. I hope you can continue to heal and feel better. Thank you so much for sharing your experience and hopefully helping others going through the same experiences.

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