Page 1 of 4 123 ... LastLast
Results 1 to 15 of 47

Thread: My niece

  1. #1
    Join Date
    Dec 2018
    Location
    Eureka California
    Posts
    30

    My niece

    Hi everyone my youngest niece scoliosis has doubled in sized it went from 8 degrees to 27 degrees. Shriners said if it gets any bigger she will need to wear a back brace. I知 really worried about her due to having scoliosis myself. I知 just hoping she doesn稚 have to go though what I went though.
    Kara
    Age 27
    Boston Brace Apr 15 2005 to May 25 2006
    Posterior Spinal Fusion March 10 2010
    T4-L2
    Before T50 and L35
    After T20 and L17
    Possible Neruomuscular scoliosis
    Possible Charcot-Marie-tooth Disease type 1A

  2. #2
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,245
    You are a very sweet and caring aunt. Your niece is lucky to have you
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  3. #3
    Join Date
    Dec 2018
    Location
    Eureka California
    Posts
    30
    Melissa that makes me happy to here. She a real sweetheart.
    Kara
    Age 27
    Boston Brace Apr 15 2005 to May 25 2006
    Posterior Spinal Fusion March 10 2010
    T4-L2
    Before T50 and L35
    After T20 and L17
    Possible Neruomuscular scoliosis
    Possible Charcot-Marie-tooth Disease type 1A

  4. #4
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,245
    Quote Originally Posted by Karagirly View Post
    Melissa that makes me happy to here. She a real sweetheart.
    I sent you a PM
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  5. #5
    Join Date
    Dec 2018
    Location
    Eureka California
    Posts
    30
    Update on my niece. My niece has been in a nighttime brace for almost 2 months. We went to Shriners a few weeks ago her back in her brace is straight.
    Kara
    Age 27
    Boston Brace Apr 15 2005 to May 25 2006
    Posterior Spinal Fusion March 10 2010
    T4-L2
    Before T50 and L35
    After T20 and L17
    Possible Neruomuscular scoliosis
    Possible Charcot-Marie-tooth Disease type 1A

  6. #6
    Join Date
    Sep 2011
    Posts
    371
    Quote Originally Posted by Karagirly View Post
    Hi everyone my youngest niece scoliosis has doubled in sized it went from 8 degrees to 27 degrees. Shriners said if it gets any bigger she will need to wear a back brace. I知 really worried about her due to having scoliosis myself. I知 just hoping she doesn稚 have to go though what I went though.
    Hi

    it is really worth looking into VBT if your niece is still growing and has a sizeable progressing curve.

    surgeons to contact are Shriners , DRs Betz, Antnacci and Cuddihy and also Dr loner VBT is done while the child is growing unlike fusion which is normally done when growth is complete.

    It is much less invasive and I believe the instrumentation is close to getting FDA approval which will undoubtedly make easier access to the procedure. There a few Facebook groups which have excellent factual detail about VBT.

  7. #7
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,192
    I think VBT will replace fusion in most kids. That's my prediction.
    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
    Join Date
    Sep 2011
    Posts
    371
    Quote Originally Posted by Pooka1 View Post
    I think VBT will replace fusion in most kids. That's my prediction.
    I think there is a way to go. it doesn't seem so successful on double curves. From what I can tell the compensatory curve does not correct even when the tethered structural one does, when the structural one is thoracic. Whether this is because the compensatory one isn't really compensatory at all?

    There seem to be having success with adult patients as well as the fully grown Adolescent. In these cases they are performing ASC which is still fusion less but where the correction is done on the table - held by the tether until remodelling takes place.
    Last edited by burdle; 05-21-2019 at 06:38 AM.

  9. #9
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,192
    Quote Originally Posted by burdle View Post
    I think there is a way to go. it doesn't seem so successful on double curves. From what I can tell the compensatory curve does not correct even when the tethered structural one does, when the structural one is thoracic. Whether this is because the compensatory one isn't really compensatory at all?
    That, if true, is a deal breaker for thoracic scoliosis in my opinion. The entire hope of avoiding involvement/structuralization of the lumbar depends on that being driven straight by straightening the thoracic spine. Fusion drives the lumbar straight in many cases. If tethering cannot drive straightness in the lumbar and fusion can in a given case, it is a no-brainer to select fusion to preserve hope of no future lumbar involvement. No question in my mind as a parent given fusion and tethering of the thorax probably feel the same to the patient.

    There seem to be having success with adult patients as well as the fully grown Adolescent. In these cases they are performing ASC which is still fusion less but where the correction is done on the table - held by the tether until remodelling takes place.
    I don't follow this. How exactly is tethering and ASC different? Are they both done on kids and adults?
    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. #10
    Join Date
    Sep 2011
    Posts
    371
    Quote Originally Posted by Pooka1 View Post
    That, if true, is a deal breaker for thoracic scoliosis in my opinion. The entire hope of avoiding involvement/structuralization of the lumbar depends on that being driven straight by straightening the thoracic spine. Fusion drives the lumbar straight in many cases. If tethering cannot drive straightness in the lumbar and fusion can in a given case, it is a no-brainer to select fusion to preserve hope of no future lumbar involvement. No question in my mind as a parent given fusion and tethering of the thorax probably feel the same to the patient.?
    VBT seems to be most successful where there is no lumbar curve to start with- not having a fused thoracic prevents degeneration of the lumbar vertebrae seen in so may adults who have had fusion as a kid.



    [QUOTEI don't follow this. How exactly is tethering and ASC different? Are they both done on kids and adults?[/QUOTE]

    ASC is still fusionless and it is an anterior approach- when done on a mature spine they use the ASC rather than VBT. The difference is they get all the correction they can whilst in surgery ( on the table) and the idea is that correction is held by the tether so the tether is tight. with VBT the tension of the tether varies to allow for further growth

  11. #11
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,192
    Quote Originally Posted by burdle View Post
    VBT seems to be most successful where there is no lumbar curve to start with- not having a fused thoracic prevents degeneration of the lumbar vertebrae seen in so may adults who have had fusion as a kid.
    Having a tethered thorax where the lumbar is not driven straight is not protective of the lumbar if protection depends on a straight lumbar which is what is claimed. What is protective is having a fusion that ends at L1 or higher where the lumbar is driven straight.

    Knowing what is claimed by experienced surgeons about the need to have a straight lumbar to avoid needing to extend a thoracic fusion, there is no question I would choose fusion over tethering if fusion could drive straightness thru the lumbar and tethering could not. Kids need that chance. And there is likely little difference in ROM so it really is a no-brainer to choose fusion in that case.
    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
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,192
    ASC is still fusionless and it is an anterior approach- when done on a mature spine they use the ASC rather than VBT. The difference is they get all the correction they can whilst in surgery ( on the table) and the idea is that correction is held by the tether so the tether is tight. with VBT the tension of the tether varies to allow for further growth
    But don't the ABC doctors do ASC on kids?
    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. #13
    Join Date
    Sep 2011
    Posts
    371
    Quote Originally Posted by Pooka1 View Post
    Having a tethered thorax where the lumbar is not driven straight is not protective of the lumbar if protection depends on a straight lumbar which is what is claimed. What is protective is having a fusion that ends at L1 or higher where the lumbar is driven straight.

    Knowing what is claimed by experienced surgeons about the need to have a straight lumbar to avoid needing to extend a thoracic fusion, there is no question I would choose fusion over tethering if fusion could drive straightness thru the lumbar and tethering could not. Kids need that chance. And there is likely little difference in ROM so it really is a no-brainer to choose fusion in that case.
    Fusionless surgery is much less invasive and leaves the spine much more moveable. Fusion causes pressure on the rest of the unfused spine which more often than not leads to accelerated degeneration.

    No need to drive the lumbar straight if the scoliosis hasn't affected the lumbar? What is claimed above is by those who do fusion - so the procedure dictates...

  14. #14
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,192
    Quote Originally Posted by burdle View Post
    Fusionless surgery is much less invasive and leaves the spine much more moveable. Fusion causes pressure on the rest of the unfused spine which more often than not leads to accelerated degeneration.

    No need to drive the lumbar straight if the scoliosis hasn't affected the lumbar? What is claimed above is by those who do fusion - so the procedure dictates...
    As I understand this issue and I may not, the key to avoiding structuralization of a non-structural lumbar curve under a fusion is to drive as much straightness as possible by straightening the thorax as much as possible. And this only applies to fusions that end at about L1. The adults you mentioned that need thoracic fusion extension likely did not have a fusion that ended at L1 or their fusion did not drive enough straightness through the lumbar or both. The claim from at least one top experienced surgeon and our experienced surgeon is that if the fusion ends at L1 and the lumbar is pretty straight, there is likely no need to ever fuse the lumbar.

    Given that, if a fusion can end at L1 or above and can drive enough straightness through the lumbar, and tethering cannot get the lumbar straight then that is a no-brainer for fusion. These kids need a chance to avoid lumbar involvement. For all other fusions... those that end below L1 or those where fusion cannot drive the lumbar straight or lumbar scolioses, tethering is probably a no-brainer because at that point there is nothing to lose in tethering.

    I have one kid who was told she is one and done because her fusion ended at L1 and her lumbar was very straight. I have another kid whose fusion ended at L1 but her lumbar was not particularly straight. She was NOT told she is one and done. I have hope that tethering will be an option for her lumbar should her lumbar become structural. Both lumbars are non-structural at this point.
    Last edited by Pooka1; 05-23-2019 at 06:29 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."

  15. #15
    Join Date
    Sep 2011
    Posts
    371
    Quote Originally Posted by Pooka1 View Post
    As I understand this issue and I may not, the key to avoiding structuralization of a non-structural lumbar curve under a fusion is to drive as much straightness as possible by straightening the thorax as much as possible. And this only applies to fusions that end at about L1. The adults you mentioned that need thoracic fusion extension likely did not have a fusion that ended at L1 or their fusion did not drive enough straightness through the lumbar or both. The claim from at least one top experienced surgeon and our experienced surgeon is that if the fusion ends at L1 and the lumbar is pretty straight, there is likely no need to ever fuse the lumbar.

    Given that, if a fusion can end at L1 or above and can drive enough straightness through the lumbar, and tethering cannot get the lumbar straight then that is a no-brainer for fusion. These kids need a chance to avoid lumbar involvement. For all other fusions... those that end below L1 or those where fusion cannot drive the lumbar straight or lumbar scolioses, tethering is probably a no-brainer because at that point there is nothing to lose in tethering.

    I have one kid who was told she is one and done because her fusion ended at L1 and her lumbar was very straight. I have another kid whose fusion ended at L1 but her lumbar was not particularly straight. She was NOT told she is one and done. I have hope that tethering will be an option for her lumbar should her lumbar become structural. Both lumbars are non-structural at this point.
    Hi,

    My feeling is that with more screening and VBT being done before fully grown maybe a lot fewer people will have a lumbar curve whether structural or compensatory- given that the most common curve is thoracic and the lumbar ones often come afterwards.

    I am not saying there is no success with lumbar or combination just that from what I read there seems to be more success with just thoracic. So no need to drive a lumbar straight if lumbar not involved. Because they don't have longterm results I guess we don't know whether addressing a thoracic will mean that the lumbar starts to independently curve afterwards. And even if it does it would have to be quite sizeable to warrant surgery.

    At the end of the day trying to leave a spine unfused has got to be the better aim !

    I am really interested in ASC on adults though but I can't think that I would be a candidate as the spine has to be flexible.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •