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Thread: Hello and broken rods :( :(

  1. #16
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    Quote Originally Posted by Tina_R View Post
    It's funny though, because I have had several CT scans in my life for other things. What's one more, in my opinion. But if there's nothing they can do to correct a failure to fuse then I guess there's no point.
    The effects of radiation are cumulative, and actually should be considered in healthcare decisions.

    https://www.ncbi.nlm.nih.gov/pubmed/31053308
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  2. #17
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    Quote Originally Posted by Tina_R View Post
    I wonder if its possible to not be uniformly fused, to have a few weak points.
    Thanks for answering. And that's good advice. I naively thought I'd be back to normal after my surgery, but I can see that things are different now and I can't be reckless.
    When looking at a fusion on a CT, even a 3D CT, should the fused vertebrae look like one complete bone when they are fused, on both sides or only on one side? Is it possible for union to be accomplished but not around the entirety of the vertebrae?
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    ??? 2020 - T10-S1 Fusion with SI fixation

  3. #18
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    Quote Originally Posted by Confusedmom View Post
    I have fallen a few times over the past 8 years.
    There it is......a few times?....Your not on the Thai kickboxing circuit are you?

    Its been a lot of years Evelyn, so sorry to hear about this.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  4. #19
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    Quote Originally Posted by LindaRacine View Post
    The effects of radiation are cumulative, and actually should be considered in healthcare decisions.

    https://www.ncbi.nlm.nih.gov/pubmed/31053308
    10-100X the radiation of a coronal x-ray, and I have read that the 3D CTs emit substantially more.

    Cumulative and time. Cancer can take its time, or be FURIOUS and spread like an Austrailian wild fire. You have to worry about the kids since they have more time.

    I've been nuked and exposed to all sorts of lovely things.....and I am still here. Some are not so lucky.......

    As far as radiology goes, these doctors are trained to report everything they see. I think as far as fusion is concerned, it probably has more to do with the integrity of the fusion over which areas are fused. ALIF fuses the front also, but not all posterior only procedures break the fusions. Fusions that used morselized bone on posterior only procedures have the bone chips spread out along the rods. I would imagine that if you spread it wider, it will show up wider on x-ray.

    My x-rays attached below do not show the bone bridge since they were done right after my surgeries. You can see the 3 markers on each spacer from L1-Sacrum. These are used to check location of the spacer since PEEK is translucent. I have not had full spine x-rays done in many many years and didnt need to actually check to see if I was fused since it doesnt make any sense. Why shoot an x-ray if you dont need it?

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  5. #20
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    Quote Originally Posted by Confusedmom View Post
    Hello,

    Well, I got the results of the CT today. The doctor says he can see bone at the levels where the rods are broken. It's hard to tell whether it completely fused and then broke afterwards or never fused. But, my bending x-rays now show movement at the levels of the breaks. So, he says I definitely have at least one area of nonfusion (pseudarthrosis). I am looking at surgery in a month or two, still not sure where.

    My question for you all is: for those of you who have had rods break, what was your pain like and how did you deal with it while waiting for surgery? I am having trouble sleeping because when I lie on my back, things seem to shift around and I start having nerve pain. Like, on a scale of 1-10, it's an 11 kind of pain. It goes down into my glutes on both sides and feels like I am having knives stabbed into me. During the day the pain is manageable, when I'm just sitting or standing. My doc ordered a brace to help with pain, and I have ibuprofen, Tramadol and cyclobenzeprine (muscle relaxant). Any other suggestions? I slept in a chair last night, and that seemed to help.

    Thanks for your thoughts,
    Evelyn
    Hello fellow rod buster,
    I broke 3 rods and had all of my hardware replaced in 3 surgeries. I now have 5 rods, shorter ones that take the pressure off just having 2 rods. That was Dr. Bob Hart's idea.

    I have never been comfortable sleeping on my back. I use ice or heat for pain relief.

    I wish you well. I troll the forum occasionally. I do not have a suggestion on the surgeons that you mentioned. If you lived in the NW I would suggest Dr. Hart.

    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 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury 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
    2018: Removal L4,5 screw

  6. #21
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    (Originally posted on the wrong thread)

    Why limiting radiation matters...

    Tonibunny, who had early onset scoliosis, was irradiated her whole life. She had a misdiagnosed breast cancer and was lost from the world. She was a treasure in on line fora in terms of educating other patients. I still miss her very much and am mad as hell at the malpractice that stole her life.
    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."

  7. #22
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    Do scoliosis patients have greater cancer rates?

    Quote Originally Posted by Pooka1 View Post
    Tonibunny, who had early onset scoliosis, was irradiated her whole life. She had a misdiagnosed breast cancer and was lost from the world.
    Sharon, It always hard for me to talk about Tonibunny....but thought I would follow up

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6560808/


    Any increase in breast or other cancers in scoliosis cohorts are likely due to the disease entity itself as scoliosis of the spine has direct biomechanical consequences on internal organs (ie, heart and lungs) as well as the spinal cord and nerves, both factors being critical issues of concern in evaluating scoliosis surgery necessity as these factors influence long-term health and longevity.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  8. #23
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    Chiros wrote that. That is the only explanation for why this passage can appear in a paper in 2019...

    The ultimate goal of treating scoliosis, and AIS in particular, is to prevent surgery. Recent evidence has substantiated that contemporary patient-specific, customized treatment approaches including intensive exercise programs (ie, Schroth methods33-35), spinal traction techniques (CBP approach36,37), and 3-dimensional types of corrective spinal braces (ie, ScoliBrace,38 Spinecor brace,39-41 Gensingen brace42) point to successful outcomes of curve magnitude reduction strategies that were not yet available or popular in the past.
    Either they were high when they wrote it or they don't know WTF they are talking about. It is as if it came through a wormhole out of the past and that there is STILL no evidence PT or Spinecor or any brace avoids surgery for life. They don't seem to even know braces don't reduce curves.

    I don't think chiros are necessarily qualified to discuss radiation exposure and I don't know about the quality of that journal but they are publishing nonsense wrt at least that paragraph I posted.
    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."

  9. #24
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    https://www.fda.gov/radiation-emitti...is-radiography

    Radiation-induced breast cancer in women has been well-documented in the scientific literature. In addition, several bioeffects studies indicate that women who were exposed to ionizing radiation during adolescence have a greater risk of developing breast cancer than those who were exposed later in life.
    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."

  10. #25
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    http://europepmc.org/article/med/27592106

    The overall cancer rate in this AIS cohort was 4.3 % which is five times higher than compared to the age-matched Danish population, and endometrial and breast cancer was most frequent. The radiation dose applied to the patients in this study, is comparable to modern equipment. This is to our knowledge the first study to report increased rates of endometrial cancers in a cohort of AIS patients, and future attention is needed to reduce the radiation dose distributed to the AIS patients both pre-operatively and during surgery.
    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."

  11. #26
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    Quote Originally Posted by titaniumed View Post
    Sharon, It always hard for me to talk about Tonibunny....but thought I would follow up

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6560808/


    Any increase in breast or other cancers in scoliosis cohorts are likely due to the disease entity itself as scoliosis of the spine has direct biomechanical consequences on internal organs (ie, heart and lungs) as well as the spinal cord and nerves, both factors being critical issues of concern in evaluating scoliosis surgery necessity as these factors influence long-term health and longevity.

    Ed
    Agree with Sharon. This is probably totally junk science.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  12. #27
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    I think the chiros wrote that paper to defend against the notion that they take a lot of radiographs. It's a self-fluff piece.
    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."

  13. #28
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    Yes, good catch Sharon

    Already knowing about the 4% in the Danish study, I was thinking about all the rest (96%) that were not affected quite as bad. Like me. Airplane pilots and even the Japanese Atomic bomb survivors (some double, Hiroshima and Nakasaki) who made it into their 90's....Also knowing breast cancer survivors that did not have scoliosis, (a lot of them)

    Even if there is no proof that Toni got cancer from repeated x-rays, cts, and flouroscopy (dont know if or how you can prove something like that) she did do 2 open thoracotomies and a costoplasty, and the standard posterior thoracic procedures that we do. (Also early bracing and its x-rays). She really did have a lot of exposure in her chest area.....(smug face)

    I guess our DNA is all so different that there are extremes that are hard to explain. Like the oldest verfied person Jeane Calment who lived to 122 and smoked every day. I had a friend who did nothing and died from cancer at age 10. I cant help from wondering about this....

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  14. #29
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    Quote Originally Posted by titaniumed View Post
    There it is......a few times?....Your not on the Thai kickboxing circuit are you?

    Its been a lot of years Evelyn, so sorry to hear about this.

    Ed
    Yes Ed, I fall like a tree. Anyone else have this problem? Ever since I was fused T4 - S1. I have no balance once I fall past a certain point. I have fallen and broken a wrist, fallen and broken an ankle (separately), and face-planted and bit through my lower lip/gum. None of it fun. But, none of the "pops" occurred with the falls. The falls also were all past the first year of fusion. So, I think I just failed to fuse in the first place because maybe I don't have great bone growth? I had osteopenia at age 40 for my first fusion, so. Yeah, this time I am going to ask for bubble wrap!!!

    On the radiation/cancer question. Yes, I was diagnosed with scoliosis at age 11 in a school screening and have had about 6 million x-rays in my life. Even though I have a lumbar curve, they always refuse to shield my upper half. However, none of us can really point to x-rays if we get cancer because guess what? About half of all people will get cancer in their lives, whether they have scoliosis or not. Fun, fun. I will take spinal fusion over cancer if given a choice.

    On that note. Good news!!! Dr. Lenke has an opening in February to do my revision!! I didn't expect it this quickly, but I will take it. Wish me luck all! Heading to NYC first week of February. The revision is around L1-L3-4. The CT was inconclusive, so he will have to decide during the operation, I think. I have a CT myelogram scheduled this week; maybe that will provide more info.
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  15. #30
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    I have the same balance issue. Iíve always suspected that it had something to do with oneís center of balance being altered. I was once on an airport train shuttle that came to a rather sudden stop. I was standing, and holding onto a pole. As the train drew to the stop, I did an awkward looking pole dance. I had no ability to right myself as it took place.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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