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Thread: A reason to do surgery earlier rather than later

  1. #1
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    A reason to do surgery earlier rather than later

    http://drlloydhey.blogspot.com/2011/...in-review.html

    From Dr. Hey...

    This also illustrates importance of screening for, and following scoliosis in younger people, especially during the adolescent and young adult years. If this woman would have had her scoliosis fixed years ago before the lowest levels of her spine became degenerative, we could have more likely fixed it with a shorter fusion, preserving the bottom 2-3 discs. As people get into their late 30's and 40's, often those lowest discs have degenerated so much that they must be included in the fusion -- not the end of the world, but it sure is nice to have "a stitch in time that saves nine!" - or that saves some mobile disc spaces.
    I have often wondered why the older patients here seem to need longer fusions based on the testimonials. Most AIS curves are thoracic only yet the majority of adult testimonials seem to be about double major curves. Something isn't matching up. Maybe the double majors just progress more than T curves in adulthood. I have read that lumbar curves and certain TL curves tend to progress in adulthood but I don't know that it is more than T curves. I can't prove any of that statistically, it just seems so based on reading this forum. Here is an explanation for that if it is true. And it seems some with only originally a structural thoracic curve have such changes in the lumbar that they develop a structural curve there also if they don't get the T curve stabilized.

    While I think screening of kids is questionable until they can demonstrate an effective conservative treatment, screening of adults with known scoliosis certainly is not.
    Last edited by Pooka1; 07-07-2011 at 10:01 AM.
    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."

  2. #2
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    nothing new...physicians are always telling their over age 40 patients, in my experience, that the spine weakens with age......
    also, the chance of activities that can cause herniated discs also seems to increase with age...

    so Dr Hey is not telling us...me...anything i didn't hear years ago...

    jess
    Last edited by jrnyc; 07-07-2011 at 01:19 PM.

  3. #3
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    Dr Hey is a wonderful Doctor and a great person as well

    Melissa

  4. #4
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    Sharon

    I had a double major as a kid and would have had the same levels fused at that time. Still, my surgeon told me that I should have had surgery sooner....my general shape didnt change much, the curves just increased along with degeneration. I was fortunate that my plumb from top to bottom remained centered.

    I made it to 49, along with many others here. Since I never met any scolis through the years, it is amazing to see others that are my age, posting pretty much the exact same story. The silent readers should post and introduce themselves. Its ok, we are all in the same boat.

    I cannot remember the stats exactly, but the curves are pretty much divided up and double majors are, I believe about 25% of all cases. I can look this up in Moes book if you wish.

    I guess the question now should be, "Is there any advantage to delaying scoliosis surgery and what would those reasons be?" Other than young sports minded people, what would be the reasons?
    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

  5. #5
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    Im thinking of adults. After maturity.
    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

  6. #6
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    I obviously don't know what it would have been like for me to wait to have my surgery, but I do know that I bounced back very quickly. I think having it at a young age makes the recovery somewhat easier and faster, which is nice. And there's the fact that progressing curves can cause a lot of problems. But you guys know all this already. : ) I just personally think that in time, most scoliosis cases that are bad enough will only get worse.

    When I was diagnosed with scoliosis at 6 years old, I had one curve. Then several years later I had two. And actually, I'm glad I had two curves. Yes, it meant that the fusion would be longer, but they sort of balanced each other out, and I didn't lean to one side like most people with one curve do.
    Katie

    My blog: http://scoliosis-braceyourself.blogspot.com/
    My video: http://www.youtube.com/watch?v=8NG9hMohsU0

    5 Boston back braces
    Spinal fusion- Nov. 17, 2009, senior year of high school
    52 and 57 degrees pre-surgery, 22 and 20 degrees post-surgery
    Dr. Kim Hammerberg, Shriners Children's Hospital, Chicago
    Back into volleyball and music as a senior in college!

  7. #7
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    Quote Originally Posted by titaniumed View Post
    (snip)
    I cannot remember the stats exactly, but the curves are pretty much divided up and double majors are, I believe about 25% of all cases. I can look this up in Moes book if you wish.
    Okay this is a good data point if correct. Someone correct me if I'm wrong but it seems like FAR more than 25% of the adult patients here are being fused long enough to be consistent with double major curves (or damage to the lumbar if not a frank structural curve) from a long-term untreated T curve. Either that or the 25% of double major curves just tend to progress far more than any other curve type. But I don't think that is correct. So it just seems that some of the single curves, expecially T curves, eventually necessitate long fusions as in orginal double majors for some reason. That reason appears to be eventual lumbar involvement even if originally not structural. And that is what Dr. Hey is saying as I understand it.

    And that jives with what we were told about fixing a T curve and not expecting any more surgery. And it also jives with some testimonials about adults with T curves where the lumbar is affected by calcification and self-fusion. I am not clear on why these folks don't RUN to get the T curve fused if only to try to save the lumbar from self-fusion or needing surgical fusion. Forget about guessing about progresion of the T curve... that is not the only issue by far.

    The take home I get from this is that if you have a T curve, get it fixed before the lumbar becomes involved. And now the question shifts to whether there are stable, smaller T curves that while not progressive in adulthood nevertheless damage the lumbar if not fixed. Pediatric orthopedic surgeons should be addressing this with parents if they have the data which they may not.

    I guess the question now should be, "Is there any advantage to delaying scoliosis surgery and what would those reasons be?" Other than young sports minded people, what would be the reasons?
    Ed
    The advantage in delaying is only for fusions extending below about L3 as I understand it. I am not aware of any advantage to delay fusing a T curve. It seems like there are only downsides to delaying the fusion of a T curve. Anyone?
    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."

  8. #8
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    Katie
    We are opposite of one another as I have no idea how my spine progressed prior to age 16.
    I did ok till age 27, then started Chiropractic for pain control. My problems started around age 42, with my first lower spasms after skiing in a competition. It was like a sword being pushed in my L3 area for 2 days. After Chiro and Accupressure, (from a Chinese girl)...smiley face, I could have gone skiing the next day. It was worth it, I made ESPN. Through my 40s sciatica became an issue...that was brutal. I gave up when I was 49 and set my date.

    Sharon
    You made me look for my reading glasses!

    Some info from Moes textbook. I was wrong. My memory has been affected since my surgeries and its bugging the hell out of me. I had to check.
    ------------------------------------------------------------------------------------------------------------------------
    In general, the single lumbar curve is the least common pattern. Lonstein and Carlson reviewed 727 patients and found the following frequency of curve patterns; 31% single thoracic, 11% lumbar, 10% thorocolumbar, and 48% double curves. The latter group includes double major curves and structural thoracic and compensatory lumbar curves. Pg 222

    Also, A double major curve is more likely to progress than a single curve. Pg. 221
    -------------------------------------------------------------------------------------------------------------------------
    Of course there are many parameters involved in types of curves, age, progression rates, etc. Some of the x-rays and pictures in this book are absolutely heartbreaking. Im sure that there are Doctors that become Orthopedics, see this material, and decide that they cannot continue practicing medicine without doing something about it. I have tears in my eyes.
    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

  9. #9
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    needing surgery to the sacrum, with pelvic fixation, can be a BIG reason for an adult to delay surgery...especially an older adult...

    jess

  10. #10
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    Quote Originally Posted by jrnyc View Post
    needing surgery to the sacrum, with pelvic fixation, can be a BIG reason for an adult to delay surgery...especially an older adult...

    jess
    Yes I agree lumbar curves have reason to delay for sure, especially those extending to the sacrum. But thoracic curves? I don't see it. Only a downside if there is any possibility of lumbar involvement.
    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. #11
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    Quote Originally Posted by titaniumed View Post
    Sharon
    You made me look for my reading glasses!

    Some info from Moe’s textbook. I was wrong. My memory has been affected since my surgeries and its bugging the hell out of me. I had to check.
    Hey! That's happening to me now also but my surgeries were a while ago. :-)

    From Dr. Moe's textbook...

    In general, the single lumbar curve is the least common pattern. Lonstein and Carlson reviewed 727 patients and found the following frequency of curve patterns; 31% single thoracic, 11% lumbar, 10% thorocolumbar, and 48% double curves. The latter group includes double major curves and structural thoracic and compensatory lumbar curves. Pg 222

    Also, A double major curve is more likely to progress than a single curve. Pg. 221
    Okay that is good info if it has been garnered from a large population and has been replicated. I wonder why he lumped lumped structural T plus compensatory L in with structural double. Maybe that is an indication that they behave the same if left untreated. If so, that is IDENTICAL to what Dr. Hey is saying wherein if you don't get the T curve fixed, it will involve the L whether the L curve was originally structural or not. If data support this, if most patients with only T curves eventually develop double structural curves, then I think it would be unethical not to lower the surgical trigger for T curves. The issue with T curves is equally progression potential AND potential lumbar involvement down the road. Equally if not more so about hte lumbar involvement. Someone needs to get those data if parents are to make a rational decision.

    What we need to know is what percentage of the double curves are really only T curves and what percentage are true double structural curves. If you assume half and half, then that brings the structural T curve total percentage to account for the majority of curves, maybe even 75% which is a number I have come across before. And then that would jive with the comment that T curves tend to progress more than other curves.

    There is some reason Moe lumped some T curves with true double majors. It seems like apples and oranges... one structural curve versus two. If the reason to lump them isn't common behavior in the out years then I'd like to know what it is.

    All these seemingly disparate data points can be fit together like a puzzle... slowly...

    Of course there are many parameters involved in types of curves, age, progression rates, etc. Some of the x-rays and pictures in this book are absolutely heartbreaking. I’m sure that there are Doctors that become Orthopedics, see this material, and decide that they cannot continue practicing medicine without doing something about it. I have tears in my eyes.
    Ed
    I agree. And yet we have any number of folks here claiming these guys are nefarious. It's jaw dropping.
    Last edited by Pooka1; 07-09-2011 at 09:12 AM.
    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. #12
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    Although fused to sacrum, life is good!

    Jess,
    My fusion from T4 to sacrum with pelvic fixation is not as horrible as one would think. I miss playing golf tournaments, but have recently started chipping and putting. If giving up golf for one season is the worst thing that happens to me in my life, I am lucky. My lumbar vertebrae had already started to degenerate, so I'm glad I didn't wait any longer ( even though I had very little pain). Did you read Jenee''s recent post? She is amazing!
    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/

  13. #13
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    From Lenke et al. (2002)
    (http://www.ncbi.nlm.nih.gov/pubmed/11884908)

    Total = 606 cases

    Type 1, main thoracic (n = 305, 51%)
    Type 2, double thoracic (n = 118, 20%)
    Type 3, double major (n = 69, 11%)
    Type 4, triple major (n = 19, 3%)
    Type 5, thoracolumbar/lumbar (n = 74, 12%)
    Type 6, thoracolumbar/lumbar-main thoracic (n = 17, 3%)

    So single thoracic accounts for half of all curve types. Now we need some data on potential for each type of curve to progress. My understanding is that T curves have the highest risk of progression but I'd like to see some data. But even if all the double majors progressed, they are only about one tenth of all cases. If I am correct in my observation that the majority of adults here have very long fusions that are inconsistent with a single curve (either T or L or TL) then there is some conversion going on between single curves to double majors if not treated. I think that result is inescapable given that double majors start out at only a small fraction of all AIS cases.

    The other observation I have based on testimonials is that L and TL curves seem to progress more in adulthood than in kids. So maybe it is only during adolescence where T curves tend to progress more than other curve types. And this jives with what I have read.

    In contrast, I would say among the kids, T curves mostly, followed by double majors, are the most prevalent curves being fused based on testimonials.

    There is some reason why the fusions for kids and adults are not more similar. And parents need these data.
    Last edited by Pooka1; 07-10-2011 at 02:22 PM.
    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."

  14. #14
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    I haven't read all this very thoroughly, Sharon... mine is long, but not a double major. I have 3 curves, but the main one is TL. Go in and look at my x-rays in my signature. The just-below-the-neck one in the digital x-rays is kind of interesting too. I did not have any x-rays taken before I was 54, am glad, even though I "knew" I had scoliosis, that I was ignorant of doing anything "about" it until I got all my family raised on their own. I just lived with it. My curves pretty much canceled each other out so I looked ok with my clothes on. The "AHA!" moments came with arthritis and menopause... much more pain, and the severe lumbar stenosis, lateral listhesis and other complications, not just the scoliosis itself.

    My own opinion-- if you need surgery, take care of the problem before families begin if possible. I am sure the younger you are, the quicker and easier it all is. Even if you have started a family, you will bounce back much quicker than someone in their 50s or 60s. Having said that-- I do not regret for one second the fact that I had my freedom for those 56 years of not being fused. I am not one of the ones who can bend and twist and get down on the floor... and I'm supposed to protect my last two lumbar vertebrae by being careful. In August I'll be seeing a different doctor since mine is doing Shriner's only now--now I will see his former partner, Dr. Christopher DeWald.
    Last edited by Susie*Bee; 07-10-2011 at 04:56 PM.
    66 and still heartbroken...
    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
    2014 DXd w/CMT (type 2)

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

  15. #15
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    Hey Susie*Bee,

    That's an interesting testimonial.

    When they told you that you have three curves, did they mean all of them were structural? I take it they were or else they would have fused just the TL curve, perhaps with an anterior fusion, which would have been much fewer levels as I understand this than what you ended up having fused. Except for the other issues of course.

    It would have been interesting to know if you only had the one structural TL curve to begin with and if you could have had a much shorter fusion and avoided all the other damage if it was fused. Now I realize that folks dealing with this before the pedicle screw era had less good choices available to them than folks today have. So my comments are towards those diagnosed now who could maybe avoid a longer fusion later due to ancillary damage or "structuralizing" a compensatory curve if they delay fusion.
    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."

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