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Thread: A newbie to the forum.......

  1. #16
    Join Date
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    Yacolt, WA
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    Carol: how do you know that you are allergic to stainless steel?
    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  2. #17
    Join Date
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    Location
    Connecticut
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    When I went to see my surgeon for my 6 month follow up.........it was really because I was in terrible terrible pain. I cry just about every night as the pain just gets to me. My surgeon did an exam and asked me a lot of questions. Finally he asked me if I was allergic to jewelry. I said, yes, I need to buy hypoallergic earrings, specifically they must be 'nickel free'. My surgeon then looked at my chart to confirm, and said that my rods are stainless steel, and that stainless stell has nickel in it.........and that I might be having an allergic reaction. I was dumbfounded because I didn't know they were using stainless........and I would have told them not to, because I knew about my allergy to nickel and stainless steel.
    I asked him, OMG, what can be done.........and he said he could remove the ss rods and replace them with titanium. I said (in a very nervous flustered voice) "you can do that?" and he very calmly said, "I can do that!", which was good to see his calmness and confidence in his reply, but I also know this means a whole other SURGERY.........and trust me, I am not looking forward to that.

    I'm having patch testing done, have had many other tests..........does anyone know about the MELISA test? I have been told that I should ask for this.

    I believe in my heart though, that this pain I have is due to allergy. The pain i have goes up/down both of my rods (they are probably each 10 inches long as it was a major fusion/correction) and it feels like there is tissue attached to the rods and that 'tissue' is pulling, tugging, itching at the rods. They don't feel like they are on fire, but the pain is excrutiating....to say the least. I need to be bed ridden most of every day. I can get up and shower but then it's rest rest rest. I might make it out to the grocery store with help, but once we are home, it's incline postion I must be.

    I did seek a second opinion with another surgeon in Boston. He seemed reluctant to call it an allergic reaction, but he also said he has no idea what could cause me so much pain. My own surgeon said that "scoliosis surgery does not CAUSE pain, not at this stage'

    So, I am at my wits end...........my only hope right now is removing those rods........I am in just so much pain.......and still taking the same narcotics I took right after the surgery.

  3. #18
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    Are the screws SS? If so will that be a problem?

    It would be a shame if you had the rods removed and still had the problem with being allergic to the screws.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #19
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    The screws could be replaced also, if they are stainless. Definitely a very good point, Sharon.
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  5. #20
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    NC
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    And any cross-linkages. My kids have one or two cross-linkages as I recall which are probably SS.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  6. #21
    Join Date
    Mar 2015
    Location
    Connecticut
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    I contacted the manufacturer after obtaining something called the "Implant Log Sheet" from my particular surgery...........the manufacturer has assured me that only the rods were stainless.

    I'm glad about that...........as maybe they 'could' replace the screws...........but I'm sure that is a lot more work, and would make for even more risk.

  7. #22
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    Oregon
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    If you are solidly fused would it be possible to just remove all the hardware? Then there would be no question about any metal allergy.
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  8. #23
    Join Date
    Mar 2015
    Location
    Connecticut
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    You know, I did see a 'second opinion surgeon' and he said that would be a possibility..........I was surprised because my own surgeon told me that I'd never be able to survive without my hardware....which I assumed was because i have 'so much of it'..........and it is basically 'holding me up straight'.

    The other issue is I'm not sure if I'm completely fused yet........they usually says one year.........and the thought of waiting four more months in my case, is terrifiying to me. I really am in so much pain and I worry about what else this allergy could be doing inside of me.

  9. #24
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    Quote Originally Posted by Carol56 View Post
    You know, I did see a 'second opinion surgeon' and he said that would be a possibility..........I was surprised because my own surgeon told me that I'd never be able to survive without my hardware....which I assumed was because i have 'so much of it'..........and it is basically 'holding me up straight'.

    The other issue is I'm not sure if I'm completely fused yet........they usually says one year.........and the thought of waiting four more months in my case, is terrifiying to me. I really am in so much pain and I worry about what else this allergy could be doing inside of me.
    Carol...

    There is no reason to leave implants in once the spine is solidly fused. I would personally opt for having the implants removed and not replaced until it's verified that the fusion isn't solid.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  10. #25
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    Connecticut
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    even though I had a large 'correction' done to straighten out my spine?

  11. #26
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    Have they ruled out infection as to why you have pain in the area of instrumentation?

    http://www.ncbi.nlm.nih.gov/pubmed/24487974

    http://www.ncbi.nlm.nih.gov/pubmed/20032526
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #27
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    May 2008
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    reno,nevada
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    Quote Originally Posted by Pooka1 View Post
    Have they ruled out infection as to why you have pain in the area of instrumentation?
    That’s what I was thinking, just needed Sharon to come up with it....

    Welcome to the forum guys....

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  13. #28
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    Quote Originally Posted by Carol56 View Post
    even though I had a large 'correction' done to straighten out my spine?
    That's what the fusion is for. Implants alone will not hold your spine straight. They're there only to hold the spine straight while fusion occurs. The implants will eventually break if there is no fusion.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  14. #29
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    And thank you Sharon for posting, and I thought it was just me that thought curve progression was risky after implant removal. I guess some surgeons “don’t” reveal all the facts. (For the Facebook group)

    Patients should be cautioned that hardware removal after posterior spinal fusion may not provide complete pain relief. Furthermore, there is risk for curve progression following removal of instrumentation, particularly in the setting of infection. Back pain may be an indicator of infection, and intraoperative cultures should be taken at the time of implant removal.

    I'm not a surgeon, but I can read. I might not be a revision patient, but it is my business to be informed.

    Sorry for the rant.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  15. #30
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    Yacolt, WA
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    Quote Originally Posted by titaniumed View Post
    Patients should be cautioned that hardware removal after posterior spinal fusion may not provide complete pain relief. Furthermore, there is risk for curve progression following removal of instrumentation, particularly in the setting of infection. Back pain may be an indicator of infection, and intraoperative cultures should be taken at the time of implant removal.

    Ed
    Now facing revision #5, I have some insight into pain and instrumentation infection and surgery. In each of my surgeries, the surgeon has said some thing like." maybe" or "probably" what is planned in the surgery will provide pain relief. Hearing the uncertainty that the surgery might not completely eradicate pain is very disconcerting when one is undergoing such a major procedure and the thought that the surgery might even make the pain worse is beyond scary. In the past 2+ years, I have had lots of back pain and even complete paraplegia having: a screw in my spinal cord, 4 broken rods, all vertebrae w/ instrumentation from T3-sacrum showing pseudarthrodesis, and a spinal hardware infection w/ P. Acnes. Fortunately, I have very little pain now and use crutches/wheelchair and will take antibiotics for the rest of my life.

    In my opinion, most revision surgery is a "best guess" [be it a very educated/experienced guess] on the surgeon's part of what to do to decrease pain. Most of the time, they get it right. Sometimes, not so much. Chronic pain neural pathways sometimes remain in spite of a surgeon's best efforts. Also, it is very difficult to grow the various pathogens that cause hardware biofilm infections.

    I hope that you find relief from your pain.

    ....and Ed, that did not even sound like a rant!

    Susan....also, not a surgeon but I also read a lot!
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

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