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Thread: (moved) How to reduce morbidity in adult scoliosis fusions

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  1. #1
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    (moved) How to reduce morbidity in adult scoliosis fusions

    Linda, that was eye-opening.

    I've been wanting to bring up a related issue that is not easy to discuss. That is, how much of the morbidity in the adult deformity surgeries is due to waiting too long? How much better would the outcome be if the surgery had happened years earlier when the curve was smaller and there was less ancillary damage and the bones very stronger and the patient was younger?

    I realize the paradigm is to exhaust all conservative avenues first and to hold surgery as a last resort. But I wonder if the outcomes would be better if the surgery was done not as a last resort. I am sure there is hardly any data because everyone waits until the last minute and I am not saying I would not exhaust all other options. I am just saying that just like most kids do pretty well over the years with this surgery, maybe adults would also do better if they got surgery earlier in the course of the disease.

    Maybe the surgery gets a worse reputation than it might otherwise if it was a first resort.

    Just throwing that out there. Surgery will always have risks so it will never be a first resort. But maybe the outcomes would improve if it was done sooner rather than later like in kids and especially in kids with TL curves with the goal to save lumbar levels.
    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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    Linda wrote:

    Unfortunately, we don't really know if fusing younger people would lead to fewer long-term complications. We probably won't know if people who are fused at younger ages will develop adjacent segment disease issues, until they're in their 50s or 60s. We know that it happens with Harrington rods, but it could be different with newer technologies. In the meantime, except for a small number of exceptions, it's pretty much considered to be malpractice to fuse a kid who is close to or past skeletal maturity, with curves under 50 degrees.

    If you start thinking of surgery like you think of bracing, I think you have to admit that it would not be ethnical to fuse anyone until their curves hit 50. Otherwise, there's no way to know if surgery is as effective as no treatment, since it appears that most people with curves below 50 degrees would not benefit from long fusions.

    --Linda
    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."

  3. #3
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    Right those are good points. I am just opining that some of these adults have such large curves with so much ancillary damage and possible osteoporosis issues and just being older. Maybe many would have gotten a better result or only needed one surgery versus several had they been fused sooner. And by sooner I mean at 50* versus 80*. And possibly a shorter fusion versus a longer 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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    I must have heard the words ďWhy did you wait so longĒ from my surgeon 5 times. I didnít think I needed to answer that one....Was this from a surgical standpoint? or pain related success standpoint? or both?

    I basically waited due to multiple reasons, and no time is a good time to be doing these sorts of things....Major deformity surgery usually isnít on our wish list, but we think about it our whole lives, or at least I did when I wasnít able to ignore it.

    Curve magnitude is one thing, and degeneration is another. I think the degeneration part of it all is worse, and creates bigger problems. Our discs are flawed.....mine also in my neck and I donít have cervical scoliosis. Itís a clue anyway....

    Wasnít it Dr Hey who mentioned adults with 50ís and over doing it by age 40? I think I read that and I have to agree with him on that one.....it would have been a whole lot easier in my situation since the anterior was added during my 2-1/2 years of talks with my surgeon....I really went downhill in those final years....it was killing me. I cant believe I hung in there so long through my 40ís.

    It is troublesome that many younger patients that are fused end up with problems above and below their fusions. One of the girls that e-mails me was done last year, and already she is having problems under in her lumbar.....Sometimes I donít know what to say. It is also very troublesome when I see young patients that have already made up their minds about having scoliosis surgery when they donít know the facts. Fuse it all at age 25? or expect future surgeries.....Tough decision. Is surgery the answer? Yes and no. Is revision surgery the answer? Sigh....

    Knowing the outcome at any given time in each patient is not going to be an easy task to study.....Thatís a big one to chew on.

    We do know one thing. Ti-Ed is still alive. (smiley face) 7.5 years post!

    The pains are a coming......and I like to approach it in a Benny Hill sort of style. Expect it? well, yeah.....but its nothing new. I will joke about it at work, do the 10 level pain stance with extreme pain facial expression, and get the most serious looks out of people. Usually I will dwell for 2 seconds, relax, and tell them ďItís cool, Iím ok, it fixed itselfĒ.

    Itís the funniest thing you have ever seen....

    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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    I am somewhat expecting that I'll need my fusion extended later in life.

    I know someone that's had her fusion extended to S1 in mid twenties after having only thoracic levels fused as a young teen.

    Sometimes I wonder if she'll need her hips/knees replaced later in life....
    30 something y.o.

    2003 - T45, L???
    2005 - T50, L31
    bunch of measurements between...

    2011 - T60, L32
    2013 - T68, L?

    Posterior Fusion Sept 2014 -- T3 - L3
    Post - op curve ~35



  6. #6
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    Quote Originally Posted by green m&m View Post
    I am somewhat expecting that I'll need my fusion extended later in life.
    Maybe and maybe not. If your lumbar straightened in response to your thorax being straightened you may be okay.

    I know someone that's had her fusion extended to S1 in mid twenties after having only thoracic levels fused as a young teen.

    Sometimes I wonder if she'll need her hips/knees replaced later in life....
    Did she have a structural L or TL curve that the surgeons choose not to fuse right away? It seems like pediatric surgeons are loath to fuse the entire lumbar in kids even though they have frank surgical lumbar curves.
    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. #7
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    Quote Originally Posted by green m&m View Post
    Sometimes I wonder if she'll need her hips/knees replaced later in life....
    Good point, and hard to say, I am not the person to ask since I trashed on my hips, knees, and ankles skiing so hard all my life. We also have the radiation thing to think about.....

    I have had hip pains lately, and actually had the knife stabs at T5, last week for 3 days during our last storm. I almost passed out at work. Now its fine, I guess ďIt fixed itselfĒ LOL

    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

  8. #8
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    Ti ed, thanks so much for contributing these ideas.

    I guess I am just dismayed at the course of some of the adult surgeries that are discussed here. There is so much suffering and I wish there was a better way. There might be a better way but we can't know it.

    Here's a question... why do adults break rods much more than kids? Why is one pediatric surgeon willing to set no physical restrictions at any point on at least some of his kids? How good would that advice be for adults? Isn't the answer not at all?

    So what is different? It seems like age, quality of bone, and lack of ancillary damage might be playing a role. If so, that would seem to argue for surgery sooner rather than later in adults, all else equal. Of course all else might not be equal.

    You wrote:

    It is troublesome that many younger patients that are fused end up with problems above and below their fusions. One of the girls that e-mails me was done last year, and already she is having problems under in her lumbar.....Sometimes I donít know what to say. It is also very troublesome when I see young patients that have already made up their minds about having scoliosis surgery when they donít know the facts. Fuse it all at age 25? or expect future surgeries.....Tough decision. Is surgery the answer? Yes and no. Is revision surgery the answer? Sigh....
    Is this in reference to a lumbar or TL curve? If so, problems might be expected. It seems like surgeons will do everything possible to avoid fusing far into the lumbar on kids. That is expected to only last so long. Life is so unfair that it is an effort not to despair.
    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. #9
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    Quote Originally Posted by Pooka1 View Post
    Ti ed, thanks so much for contributing these ideas.

    I guess I am just dismayed at the course of some of the adult surgeries that are discussed here. There is so much suffering and I wish there was a better way. There might be a better way but we can't know it.

    Here's a question... why do adults break rods much more than kids? Why is one pediatric surgeon willing to set no physical restrictions at any point on at least some of his kids? How good would that advice be for adults? Isn't the answer not at all?

    So what is different? It seems like age, quality of bone, and lack of ancillary damage might be playing a role. If so, that would seem to argue for surgery sooner rather than later in adults, all else equal. Of course all else might not be equal.
    Well thanks Sharon...

    Babies grow in 9 months and kids heal quickly......must be a stem cell thing. Young blood. Rods break because we donít fuse properly for some reason..... I will have to ask Crystal her thoughts after she comes back from Ghana. She will be an emergency room pediatric surgeon which is the ultimate in split second decision making. She is sharp as a tack and in her 3rd year residency now? and far from done..... I used to call her ďPupaĒ Now I call her ďDr PupaĒ. (smiley face) She will eventually come back to Reno, we hope around 4 or 5 more years. I donít think she will ever stop studying medical science......we talked about this many years ago, and she has accepted it. I feel that nutrition plays a huge part, Iím sure she will agree.

    My surgeon did NOT want me donating my own blood. I often wonder if he requested ďYoung bloodĒ if thatís something that can be done? I felt like hell till I had my transfusions.....that was a breath of fresh air.

    How often do kids break rods? Thatís a good question we donít see at all here..... Maybe Linda knows.....

    Yes, it seems like sooner is better......but we donít know in each case. Itís the best we have.....

    We do have an older scoli crowd here and yes, the testimonials are a hard pill to swallow sometimes.....and its good that this information is relayed here as it helps all of us understand about our affliction. Good testimonials along with bad help everyone understand.....It would be nice if more parents like yourself chimed in.....but parents do have it worse and they tend to worry....

    I think about what happened many years ago......and consider myself vey lucky to have had things pan out the way they did. I knew that things would be iffy after all the talks with my surgeon. Surgeons need to know that we need time and knowledge in making our surgical decisions. They need to be patient with us. Its an education process. What is happening now, is one heck of an improvement over what happened
    50 years ago......and it will continue to get better. My surgeon wanted me here posting on NSF.

    I expected complications. That was guaranteed by my surgeon.....Once we make our initial decision, we need to know and not be surprised should something happen. It can happen right away or many years down the road.....and we donít know, and need the studies to find out. The 10,000 pc zig-saw puzzle continues.....

    I hope Iím fused at T5. I donít have sagittal issues,or any movement, it was weather related nerve....or soft tissue issues. A common thing with us......

    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

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