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Thread: Surgery should be last resort

  1. #46
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    Talking My first surgery was 1956-lived NORMAL LIFE WITH A FUSED SPINE

    My case which I often restate: First surgery, NO Hardware, age 14 in 1956(!) by Dr. John Cobb of Cobb angle fame. Triple curves-largest ~100 deg. Fusion T-4 to L-2. Lived 44 years with a fused spine, became an RN and later nurse-anesthetist-nurse practitioner.
    Curves were only slightly reduced and "balanced". Still had a significant hump and right shoulder slightly lower. Certainly not done for cosmetic reasons(never is). In my 50s my fused spine, but unsupported by NO hardware, collapsed. I began to become bent over and lost lung capacity. I elected for a revision at age 60-in 2002.
    I AM NOW 70 1/2.
    One does what has to be done for quality of life and health. I am PAIN FREE. To wait for the spine to get SO bad that one can hardly walk seems like folly to me. If the curves are progressing in adulthood nothing but surgery can stop it. Pains can be ameliorated somewhat with assorted therapies and medications but the source of the pain is not removed-only masked.

    No one on the forum is a surgery nut and "loves" fusions. There is wide spread gratitude that a remedy exists. Doing the surgery before massive deformity, enables a better correction, faster healing and quicker return to a normal, productive life.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  2. #47
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    For what it's worth, I totally agree with Tamena and Karen Ocker.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  3. #48
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    60 % of kids have spontaneous correction?

    Quote Originally Posted by TAMZTOM View Post
    <snip>...according to the research suggesting 60% spontaneous correction of kids with growth remaining, will improve more.<snip>

    Hi Tom,

    This thread is too time-consuming for me to follow closely, but I am glad to hear Tamzin is doing so well.

    Could you please comment/elaborate on your comment quoted above about 60% of kids with curves under 20 degrees having spontaneous corrections? I have never seen any statistic like that. Do you have a link? It would certainly give me hope for both of my kids who now have JIS (both currently under 20 degrees, one improved after stapling and one with an emerging curve). We were told that in JIS, 70 % progress and 30 % don't, and of those that progress, a huge percentage progress to surgery (some quotes as high as 95%). Not too encouraging.

    Thanks,
    Last edited by leahdragonfly; 12-29-2012 at 07:21 PM.
    Gayle, age 50
    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)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

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

  4. #49
    Join Date
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    Quote Originally Posted by leahdragonfly View Post
    Hi Tom,

    This thread is too time-consuming for me to follow closely, but I am glad to hear Tamzin is doing so well.

    Could you please comment/elaborate on your comment quoted above about 60% of kids with curves under 20 degrees having spontaneous corrections? I have never seen any statistic like that. Do you have a link? It would certainly give me hope for both of my kids who now have JIS (both currently under 20 degrees, one improved after stapling and one with an emerging curve). We were told that in JIS, 70 % progress and 30 % don't, and of those that progress, a huge percentage progress to surgery (some quotes as high as 95%). Not too encouraging.

    Thanks,
    Hi LeahD

    I've got the link in my notes...hunting for it now!

    Regards
    Tom
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

  5. #50
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    Karen Ocker,

    Do you have pics of your spine now? I am amazed at having surgery in the 50's and not a problem for so many years. You are a walking testimony for early correction. Thank you for sharing!

    Tamena

  6. #51
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    maybe i read it wrong, but the surgery in the 1950's didn't sound, to my reading, like much of a correction...
    perhaps i misinterpreted it...

    jess

  7. #52
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    Quote Originally Posted by TAMZTOM View Post
    Hi LeahD
    I've got the link in my notes...hunting for it now!
    Regards
    Tom
    Found this paper, but I'm not sure it's the one I was looking for...along the same lines though. Not quite as optimistic, 25% regressed, 40 off % stabilised. That's 60 odd percent non-progressive, but not all regressive.

    http://www.josr-online.com/content/p...-799X-5-80.pdf

    If I'd been offered a 60% chance of Tamzin not progressing back in June 2011, I'd have bitten the arm off the person offering to accept. With a postural percentage in every scoliotic curve, taking the stability and then knocking off even the postural percentage was attractive back at diagnosis. E.g., Tamzin T40 - 42 on x-ray; T25 - 27 on MRI; rough approximation back then suggested to me that I'd get her down to 25 on the thoracic. We have. Did better on the lumbar curve so far, down from 39 to approx 20 (it's really better than that now--right in the mid-line, so probably closer to 10 - 15 all day when standing).

    I've read other stuff here and there about working the muscles hard during "precocious growth spurts", JIS territory. With Tamzin, we MAY have caught her still in the equivalent of a 9 yr old frame as she did/does have delayed growth because of the neuro issues. Regardless of aetiology, asymmetric muscle strength is a factor in progression; catching the kids really young can address that aspect of progression and quite likely tip the scales towards stability or correction. We tried to counter every single aspect of postural imbalance and muscle asymmetry and the scoliotic neuromuscular system to increase the chance of stability and correction. It seems logical to suggest that some of these kids who spontaneously regress or spontaneously correct accidentally adopt alternate muscular strategies that stop progression; if they're below that 25 degree mechanical threshold for progression, growth can assist the correction/stabilization process.

    In present study, we reviewed the curve pattern of immature idiopathic scoliosis patients; and observed different
    pattern of curve during progression, regression or resolution of curve. Based on our observation we think that tuning or balancing mechanism of spinal column may be an important factor in progression, stabilization or regression of curve, especially in mild degree early curves. We tried to answer our question that in growing spinal muscles or ligaments try to balance the whole spinal column as they get matured and, due to this balancing mechanism mild scoliosis curve shows regression or resolution [24]. Those paraspinal muscles that can’t balance enough, scoliosis curve will progress.
    It's a rational chance. We grabbed the chance with both fists and it's worked so far. Ours wasn't accidental though as we choose what to do. THAT'S WHY I'M UP HERE RESEARCHING FROM EARLY MORNING TO EARLY MORNING! There is enough good science out there, much of it discarded, that allowed me to sift and use what I decided would work. On that foundation, we developed our own stuff on top, still backing it up with solid scientific principle and fact. We simply couldn't wait for long-term research to decide how to effectively deliver effective non-invasive treatment.

    OTHER QUOTES FROM THE PAPER:

    The incidence rate of changing pattern was noted 46.1%. The possible reason for these changing patterns could be better explained by the tuning/ balancing mechanism of paraspinal muscles which try to balance the spine, and result into spontaneous regression or stabilization of curve.

    The other theory proposed for progression of scoliosis is paraspinal muscle imbalance by several authors. Ford et
    al [17] suggested that underlying cause of the adolescent idiopathic scoliosis might be the imbalance in the deep
    muscles at the apex of the curve. They supported the hypothesis of Fidler and Jowett [35] who suggested that
    increased tonic activity of the deep medial paraspinal muscles, such as multifidus, on one side of the spine
    and a consequent effect on vertebral growth could be of importance in the aetiology of idiopathic scoliosis.

    We did not find any relationship between side of curve or number of curve and regression, stabilization or progression of curve; however, boys had higher chances of regression than girls. Additionally, our results proved that there should be possibly other factors responsible, especially in skeletally immature children that might have impact on fate of curve. Since muscles cause movements and maintain tonus, they can be considered to produce skeletal deformities in situations of imbalance [37]. In other words, situations of imbalance of the back muscles may be the only causal factor for scoliosis.

    While Weiss showed decrease in muscular imbalance between convex and concave side with physical rehabilitation program that ultimately reduced the Cobb angle in their subjects [23].
    I don't like citing Weiss as...well, I don't like the guy. However, I'll suck it up for the moment. Despite problems with all this research being non-conclusive, etc., there are clear cases of SOME few kids correcting in them all. Those are the ones I focused on: how did this one out of so many correct? I stitched all that type of stuff together to give us a start. It's not that some of these methods don't work, it's that the methods are not implemented (taught, practised, ingrained) in a manner that's even likely to work. We did in differently to what's on offer out in the marketplace.

    Thus, based on these literature reviews it is clear that in skeletally immature patients with mild scoliosis paraspinal muscle try to get activated and balance themselves which might be a responsible factor for spontaneous resolution of curve. Once muscles fail to balance and disc or vertebral end plates start showing changes in growth plates, the curve will show progression of curve. We showed that 46% of cases in our study initially exhibited changing pattern in their curve and later on it become stabilized in one pattern. This points out that in skeletally immature children, when curve starts to appear, paraspinal muscles try to balance the spine by their inherent “balancing or tuning mechanism” for a short period of time till it stabilizes into a single pattern. This spinal balancing mechanism might result in a wavy pattern of Cobb angle during the follow-up till it follows one of final path of progression, stabilization or regression (Figure 3).
    The scenario is even better: wedged discs and vertebrae can be remodelled with appropriate force, especially so with young kids (compared to older kids...but the theory still applies to older kids and adults).

    Conclusion
    Present study shows the possible role of spinal column tuning mechanism in skeletally immature children with
    mild scoliosis curve for regression, stabilization or progression. If rehabilitation or physical therapy program is
    applied during this period of immaturity, scoliosis curve might regress with increased activation.
    We didn't gamble, we took the chances and made them work. We'll keep doing that in an attempt to get her through more growth, but the 14cm of growth so far--during puberty--give us reason to continue.
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

  8. #53
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    "Correction" in the 1950s

    Quote Originally Posted by jrnyc View Post
    maybe i read it wrong, but the surgery in the 1950's didn't sound, to my reading, like much of a correction...
    perhaps i misinterpreted it...

    jess
    Jess, you are right.
    The correction involved reducing my thoracic curve to "balance" my 3 curves. I has some cosmetic improvement. This was done with a turnbuckle jacket- a cast with a hinge on one side and a turnbuckle on the opposite side. It was turned every day to stretch my spine to the desired correction. That was the state of the art in the 1950s. Only extreme cases like mine had surgery. Hardware was not invented so a year no walking(!) in a series of casts after the 2 stage surgery- done through a hole cut in the back of the cast- was performed. Bone was obtained from a bone bank.
    As primitive as that sounds it gave me 40+ years of a normal life. I had no difficulty making the decision for a revision with the modern advancements-- and that was 10 1/2 years ago!
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  9. #54
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    Early intervention?

    Quote Originally Posted by tae_tap View Post
    Karen Ocker,

    Do you have pics of your spine now? I am amazed at having surgery in the 50's and not a problem for so many years. You are a walking testimony for early correction. Thank you for sharing!

    Tamena
    I have not taken any photos. My case in the 1950s was NOT early intervention. The thinking , at the time, was to wait for skeletal maturity and for the progression to "stop"(?). By then I was a pitiful sight. My mom sent me to a chiro and I really wonder whether that made me so flexible that my curves got worse. My sister, brother and girl cousin have scoliosis but none of them needed surgery. They did NOT have chiro.
    My mom's back got really deformed in old age-lived to 93- but her back never bothered her.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  10. #55
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    Indiana
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    A friend of mine from church also had surgery back then, with no instrumentation, was in a cast on her back for a year. She lived a full life up until about 8-10 years ago. Now her curves are so bad and she is so frail that no one will touch her with a 10 foot pole. I think her main curve is well above 100º and she is in constant pain.
    67 and plugging along...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  11. #56
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    Thanks for sharing these stories. Helps me understand why doctors always say do it while you're younger.
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  12. #57
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    Feb 2012
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    1
    Although I had this surgery fairly recently, I disagree that this is still the case. I know all the complications that were arising during the time that they were using Harrington rods and the procedures have become much more advanced and less risky. I had my surgery a little over 2 months ago with a double curve around 50/50. Not only did I feel absolutely no pain but I was off of narcotics 2 days after my surgery and could take care of myself completely in around 8 days. At 2 months post-op I am back to normal. I've been back to work and school for about a month now and the only thing restricting me is my weight limit. I was right on the cusp to have the surgery and I'm so glad I did. I have absolutely no pain whereas before the surgery, I was constantly sore. In my opinion, I would wholeheartedly recommend it to anyone who might be wary.

  13. #58
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    May 2009
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    Izzy, not everyone has such a successful outcome...
    there are patients on forum who report having surgery with TOP
    surgeons, following all instructions and doing all they were told to
    do for aftercare, yet end up with problems, needing revision, or
    in pain after the healing period....
    and if you talk to some of the top surgeons, they will agree that
    surgery should be a last resort...
    surgery presents different problems depending on the age of the
    patient....
    but several surgeons will say that only when the patient has no place
    left to go, no other option, and cannot function anymore is when they
    will go ahead and agree to operate...
    those doctors are often considered more "conservative"...
    but they are out there, and they are excellent doctors.


    jess...& Sparky

  14. #59
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    Quote Originally Posted by Izzy View Post
    Although I had this surgery fairly recently, I disagree that this is still the case. I know all the complications that were arising during the time that they were using Harrington rods and the procedures have become much more advanced and less risky. I had my surgery a little over 2 months ago with a double curve around 50/50. Not only did I feel absolutely no pain but I was off of narcotics 2 days after my surgery and could take care of myself completely in around 8 days. At 2 months post-op I am back to normal. I've been back to work and school for about a month now and the only thing restricting me is my weight limit. I was right on the cusp to have the surgery and I'm so glad I did. I have absolutely no pain whereas before the surgery, I was constantly sore. In my opinion, I would wholeheartedly recommend it to anyone who might be wary.
    Izzy-- I am so happy for you that you had such a quick and wonderful recovery! Hurray! But even in this day and age, some of us take much longer-- it was at about 3 or 4 months that I realized I could not go back to my school job and ended up taking a year off. I had lost my strength and endurance. I was on the stronger (hydrocodone) pain meds for 5 months, then milder ones for awhile after that. I worked very hard to build myself back up, but it's not a always mind over matter. It was bullheadedness and determination and time that got me back in shape. In the course of my time on the forum, I have witnessed some heartbreaking tales, so there aren't always fairytale endings. USUALLY people's surgeries end up fine, recoveries vary, but surgeons, no matter how experience and well-known they are, always give a caveat because it is a serious surgery. Age does play a factor, but even some younger people have experienced problems too.

    As for my friend from church who had the surgery similar to Karen's (fusion without instrumentation) -- her back is so deformed now and her spinal cord is so tangled and there is so much wrong that they just can't do anything plus she has severe osteoporosis. Even without the tangled mess she is in, there is a point they will not operate because of problems they can't overcome. At least that is what I've read/heard.
    67 and plugging along...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  15. #60
    Join Date
    Dec 2012
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    26

    pain after surgery

    Cornerthree
    After watching this video, all I could think of was your post. I have used this method in the past and still use some of the e-cises daily. I have not had surgery so I cannot directly relate to your issues. But, this video does.
    http://www.youtube.com/watch?v=av8dwWXbCrU

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