Results 1 to 15 of 123

Thread: DD recently diagnosed -- any suggestions?

Hybrid View

Previous Post Previous Post   Next Post Next Post
  1. #1
    Join Date
    Aug 2019
    Posts
    53

    DD recently diagnosed -- any suggestions?

    Hi. Daughter (just turned 13) was recently diagnosed. S-curve. Three docs have all measured her curves differently, but they average out to 32T/32L (one doc had the thoracic bigger, one had the lumbar bigger, and one had them the same). The ortho that she saw said it's 50-50 whether they'd progress to needing surgery if left untreated, so he prescribed a brace, which he said probably cuts those odds in half (if she complies). She gets that next week. Some concerns/questions:

    1.) The one thing I wasn't super happy about at her ortho appointment was the assessment of her skeletal maturity. When I asked, the doc just said "oh, her growth plates are still wide open, she has a lot left to grow." He did that without asking about menarche, growth spurts, etc, and he didn't do hand/wrist x-rays.

    This is important because I think she could be a lot more skeletally mature than he thinks -- her period was almost a year ago, and her peak growth velocity was probably about 16 months ago (we measured monthly and the markings are on the wall). Her growth also has slowed pretty significantly in past months (about six inches from 11 yo to 12 yo checkups, but only 2.5 inches from 12 yo to 13 yo). Based on that, just statistically speaking, I'd guess that she's more like Risser 2-3 and Sanders 5-6, which as I understand it, makes the possibility of significant future progression a lot less likely. Also, based on her lumbar image, it looks to me like there is "fuzz" running on the top of her iliac about a third of the way from the outside in -- though the scan cuts out the entire outside edge of the hip, so it's hard to know for sure. Unless that's a random shadow, that would mean she's well into Risser 2, right?

    2.) If she is as immature as the doc assessed, if she progresses even a few more degrees over the next few months, would she be a VBT/ASC candidate? My BIG concern is that the bottom curve is really low (centered at L3/L4), so if she had to get fused for the lumbar curve, it could be pretty catastrophic in terms of reduced mobility. She's also a super competitive athlete, to the point that her coaches have advised that while it's a long way off, she's currently in the range of girls who play in college in her sport. We definitely want to avoid fusing that low so she can keep playing (as well as avoiding the long recovery).

    3.) Any other suggestions? She has an appointment with another ortho in a few weeks to get a second opinion, so in addition to the above, we'll have the opportunity to ask additional questions if there is anything important.

    Thanks in advance!

  2. #2
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,395
    Quote Originally Posted by Concerneddad View Post
    would she be a VBT/ASC candidate?
    It would be best to get your tethering questions answered by a "tethering" scoliosis surgeon. Below is a link
    https://pediatricspinefoundation.org/physicians/


    Scoliosis surgeons are Orthopedic surgeons with Scoliosis training. Scoliosis trained surgeons are the only surgeons trained at "balancing" the spine. If you see any surgeons for her scoliosis, make sure its a scoliosis trained surgeon, not a regular Orthopedic surgeon.

    There was a 18 year old 50/50 degree "S" curve tethered here around a year ago, but she hasn't posted so we don't know how she is doing. I think Dr Lonner did her.
    https://www.scoliosisassociates.com/...ctive-surgery/

    Ed
    Last edited by titaniumed; 09-03-2019 at 07:53 PM.
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA 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

  3. #3
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,187
    Hi...

    I would also be concerned about the skeletal maturity issue.

    Where do you live? If possible, I'd recommend ensuring that the second ortho you see is a spinal deformity specialist.

    --Linda
    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

  4. #4
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,395
    Quote Originally Posted by LindaRacine View Post
    Hi...

    I would also be concerned about the skeletal maturity issue.
    Yes, as far as tethering is concerned, the timing has to be right.

    The data Sharon posted mentioned that the tethering candidates are 1 out of 5. Only 20% of these kids are accepted for VBT.....

    If she were my daughter, I would take her to a "VBT surgeon" right away.

    Braces are hard to deal with. They make some pretty nice looking braces these days, but still have to be worn just about all the time with no guarantees on holding a curve. I cant recall any "S" curve bracers here.....

    What sport?

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA 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
    Join Date
    Aug 2019
    Posts
    53

    DD recently diagnosed -- any suggestions?

    Quote Originally Posted by titaniumed View Post
    Yes, as far as tethering is concerned, the timing has to be right.

    The data Sharon posted mentioned that the tethering candidates are 1 out of 5. Only 20% of these kids are accepted for VBT.....

    What sport?

    Ed
    Hi, thanks guys. Her second opinion is with a scoliosis-specific doc who (I think) is the only one to perform VBT surgery in our state. It's totally fortuitous -- he's the one our pediatrician recommended from the outset -- it's just he was scheduling so far out that we wanted to get her seen sooner. Her other doc is also a pediatric ortho, and I was generally fine with him (he came recommended), he seemed kind of cookie cutter in how to go about treatment. I'm just concerned that that ends up in a long fusion if bracing doesn't work, which isn't really what we want if there are any other options.

    I was playing a little coy on the sport, but oh well, she's a very good basketball player. 5'9" in her bare feet (so 5'10-5'11" for basketball roster purposes), with three-point range out to Kansas. If she can stay healthy, my guess is that she'll be a pretty good, big shooting guard in college. She's extraordinarily tough and smart, and again, the range is just wow.

    My concern on the maturity isn't so much eligibility for VBT/ASC surgery, it's that I think she's probably almost done growing. If she is, great. She's (probably) out of the woods, and we'll probably brace for six months or so, but just as a precaution. This is just a problem she'll need to monitor into adulthood. If she isn't almost done growing, also great, but it's something we need to be a little more proactive on, because there is risk of it getting worse, and there are things we can do now if we're diligent about it. I guess it's good we have the opinion with the second ortho!

    Thanks again for the advice...

  6. #6
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,395
    I see...Scoliosis patients need to be monitored "especially" through growth spurts.....as adults, some of us have waited....I waited 34 years and was fused at age 49.

    Both of my curves progressed approx 20 degrees in 34 years with extreme physical abuse. (Many high ski jumps and devastating crashes) Didn't crash much, but when I did, I broke things. Its amazing what the spine can handle....

    Be sure to let us know how it all pans out.

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA 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

  7. #7
    Join Date
    Sep 2011
    Posts
    372
    Quote Originally Posted by titaniumed View Post
    Yes, as far as tethering is concerned, the timing has to be right.

    The data Sharon posted mentioned that the tethering candidates are 1 out of 5. Only 20% of these kids are accepted for VBT.....

    If she were my daughter, I would take her to a "VBT surgeon" right away.

    Braces are hard to deal with. They make some pretty nice looking braces these days, but still have to be worn just about all the time with no guarantees on holding a curve. I cant recall any "S" curve bracers here.....

    What sport?

    Ed
    I would also ask about ASC . you are in the grey area for progression through adulthood but ASC is also done when growth complete - especially if progression is likely.

  8. #8
    Join Date
    Aug 2019
    Posts
    53

    Otoh

    On the other hand, we went out on an outing today, and took pictures... and she's pretty clearly grown about a half inch in the past few months. In the early summer, she was a quarter inch or so shorter than me, and now she's a quarter inch or so taller. It's definitely noticeable, and we confirmed in bare feet at home. She's ecstatic (stupid basketball players); her parents are concerned that she's still apparently growing at a decent clip.

    I guess the good news is her second opinion appointment is in eight days. I'm going to be pretty insistent that they do another x-ray. 5-6 weeks is enough that we should be able to see if the angles are jumping like I'm worried about.

  9. #9
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,395
    Quote Originally Posted by burdle View Post
    I would also ask about ASC
    Burdle, On ASC, it seems that the ABC doc's in New Jersey have patented the adult tethering procedure so its really hard to find any data on surgical methods.....They don't give away "any" information on ASC. ASC or Anterior Scoliosis Correction via tethering is not the only way to correct a scoliosis spine, its too general, you have to specify tethering or VBT along with ASC in searches since surgeons have been operating through the side for many many years. (For those that don't know, anterior procedures are from the front AND the side.) Open Thoracotomy procedures under the armpit have been done for many years. Tonibunny had them done on both sides many years ago.

    How they straighten the curve under anesthesia.... I assume that they do this convex up, and adjust on a Jackson OSI table. Also, I am not seeing any adult tethering testimonials that have any decent amount of time behind them which seems strange. You have to wonder about tether breakage. I also wonder how they know when a tether breaks. I wonder if radiopaque markers on tethers would help?

    https://www.mizuhosi.com/products/spine/proaxis/

    I cant help but wonder.

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA 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

  10. #10
    Join Date
    Oct 2019
    Posts
    39

    Bracing works if done right

    Quote Originally Posted by Concerneddad View Post
    Hi. Daughter (just turned 13) was recently diagnosed. S-curve. Three docs have all measured her curves differently, but they average out to 32T/32L (one doc had the thoracic bigger, one had the lumbar bigger, and one had them the same). The ortho that she saw said it's 50-50 whether they'd progress to needing surgery if left untreated, so he prescribed a brace, which he said probably cuts those odds in half (if she complies). She gets that next week. Some concerns/questions:

    1.) The one thing I wasn't super happy about at her ortho appointment was the assessment of her skeletal maturity. When I asked, the doc just said "oh, her growth plates are still wide open, she has a lot left to grow." He did that without asking about menarche, growth spurts, etc, and he didn't do hand/wrist x-rays.

    This is important because I think she could be a lot more skeletally mature than he thinks -- her period was almost a year ago, and her peak growth velocity was probably about 16 months ago (we measured monthly and the markings are on the wall). Her growth also has slowed pretty significantly in past months (about six inches from 11 yo to 12 yo checkups, but only 2.5 inches from 12 yo to 13 yo). Based on that, just statistically speaking, I'd guess that she's more like Risser 2-3 and Sanders 5-6, which as I understand it, makes the possibility of significant future progression a lot less likely. Also, based on her lumbar image, it looks to me like there is "fuzz" running on the top of her iliac about a third of the way from the outside in -- though the scan cuts out the entire outside edge of the hip, so it's hard to know for sure. Unless that's a random shadow, that would mean she's well into Risser 2, right?

    2.) If she is as immature as the doc assessed, if she progresses even a few more degrees over the next few months, would she be a VBT/ASC candidate? My BIG concern is that the bottom curve is really low (centered at L3/L4), so if she had to get fused for the lumbar curve, it could be pretty catastrophic in terms of reduced mobility. She's also a super competitive athlete, to the point that her coaches have advised that while it's a long way off, she's currently in the range of girls who play in college in her sport. We definitely want to avoid fusing that low so she can keep playing (as well as avoiding the long recovery).

    3.) Any other suggestions? She has an appointment with another ortho in a few weeks to get a second opinion, so in addition to the above, we'll have the opportunity to ask additional questions if there is anything important.

    Thanks in advance!
    Before you choose surgery, please consider Scoliosis Care Centers in Campbell, California. The massive curve corrections that they discuss on their website are true. I have seen it first hand. I am a medical professional myself. They have only been doing this for 10 years, and their data is not yet published, but they are routinely preventing progression of curves and reducing curves in most cases as well with. Their primary tool is a unique bracing technique, but it is a program that includes other interventions as well. Your daughter would have a smaller window that a lot that they work with, but they are having success in lots, and I dare to guess most, of cases with 13 years olds. A Boston brace or something similar is from the stone ages compared to what they are doing. Orthopedic doctors will say it is not possible, because this new method has yet to hit the peer reviewed literature.

  11. #11
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,298
    Quote Originally Posted by Dustin76 View Post
    Before you choose surgery, please consider Scoliosis Care Centers in Campbell, California.
    These are chiros advertising. Chiros are not trained to handle scoliosis and there is no evidence chiro can help scoliosis.

    Their primary tool is a unique bracing technique,
    Chiros doing bracing and not chiro? What can we deduce about chiro about that???

    A Boston brace or something similar is from the stone ages compared to what they are doing.
    What exactly are these chiros doing with bracing??? Which brace is not stone age??? Is there some reason you are not being specific???
    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
    9,298
    ps. Chiros have no training in bracing. I don't know why that is allowed. Their training is in chiro subluxations of the spine which have been shown to be imaginary.

    When the evidence just wasn't there for the SpineCor brace, surgeons stopped using it. But chiros were offering it and making a mint. Chiros do not traffic in evidence-based anything.
    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
    Oct 2019
    Posts
    39

    Specifics for curve reducing bracing method

    Pooka1:

    I understand your skepticism. I am a physical therapist who is very skeptical of a lot of chiropractic methods, and I am a skeptic in general.

    Our son has a 24 degree curve that was identified in July this year and he is only 5 years old. I read all the pertaining peer-reviewed literature that I could find for scoliosis treatment, and was deflated to find that I would just be told to wait and see if it gets worse. We were referred to Shrinerís near where we live in Washington State, but we didn't go. In doing my online searches, I came across this place in California that claimed to be not only preventing progression of curves, but significantly reducing them with a bracing technique that is entirely their own. Compared to the literature, there claims seemed to be too good to be true. In addition, the person behind this is a chiropractor, so I initially dismissed this as fake.

    But in doing more research, I found no other alternatives. So I thought, why not give them a call. That call was at least convincing enough to do a Skype consult (free) with Dr. Matt Janzen, who started this method of scoliosis treatment. I now regret how short I was with him at first, but I immediately wanted to know why there is nothing in the literature about this method and why no one else seems to know about this and why every kid with scoliosis isnít going there. He explained that, about 10 years ago, he decided that there has to be a better way of addressing idiopathic scoliosis than the standard "wait and see method" until they reach bracing level. Then go to a brace that might slow progression until the 40 degree mark usually resulting in a recommendation for surgery.

    At this point, I will tell you that this guy has an understanding of the pertaining anatomy as well as any orthopedic surgeon. He is also a mechanical/fabrication whiz.

    Without disclosing proprietary information for a method that is really innovative and new by medical standards (10 years is nothing by medical standards), here are some keys to the method.
    1. The process to get the patient measured for the brace to have it be corrective is one-of-a-kind and Iím sure proprietary. I wonít describe it in detail, but it is genius.
    2. They rarely use x-rays (maybe one or 2 if needed). They use a stand-up, open MRI unit to get the baseline spine image and throughout the brace fitting and adjusting periods. These non-diagnostic MRIs only take 2.5 minutes (versus a typical diagnostic MRI that would be 30-60 minutes). They do as many MRIs (could be 10 or more but usually less than that) as needed to get the initial brace fit as good as they feel like they can. For example, my son was at 24 degrees out of brace. He is now at essentially neutral in brace Ė less than 2 degrees of lateral curve anywhere along his spine. It took repeated brace adjustments and 4 MRIs and even scrapping the first brace and starting a new one to get his spine to be neutral in brace. It then takes more adjusting to eliminate pressure points. The measuring and fitting process takes several days typically.
    3. Brace wearing for the typical idiopathic scoliosis that they treat is usually 23-24 hours per day and the braces are very snug. Bracing continues until skeletal maturity. After the puberty stage of rapid growth ends Ė usually around 13 or so for girls (probably 95% of who they see are girls Ė since most idiopathic scoliosis occurs in girls), brace time each day can sometimes be reduced.
    4. Matt Janzen believes that nerve tension (spinal cord and spinal nerves not growing fast enough to stay with spine growth) is a huge causative factor if the not the primary cause of what is currently known as idiopathic scoliosis. For this reason, in most patient cases, neural stretching is a big emphasis to go along with bracing.
    5. Another part of the program for many patients is a custom ďstretching chairĒ that stretches against the curves even more aggressively than the brace, but just for 20-30 minutes, 2-3 times per day. This unit stretches rotationally at any angle as well as addressing the curvature.
    6. There are some additional and more minor measures that they sometimes employ as well.
    7. Key to their method is the idea of addressing the scoliosis three-demensionally. Reducing rotation is as important as reducing lateral curvature and they go together usually.
    8. They are aware of the danger of rib deformation with long-term bracing, and their system accounts for this.
    9. They have exercises to address the trunk strength loss that can occur with long-term bracing.


    This is better than their average results, but we met a family there with a 10 year old girl who arrived a year ago with an S shaped scoliosis with two, 60-degree curves. Her curves are now in the 20-25 degree range out of brace and in the single digits in brace. Of course her parents were told at Shrinerís and Seattle Childrenís hospital that surgery was the only option and that she would be limited her entire life. Her long-term outlook is now looking amazing! She could be scoliosis free when bracing is done.

    We talked to family after family from all over the US and all over the world that were in the midst of various stages of correction of curves.

    This method started 10 years ago. They now have many former patients, told that surgery was their best hope, who now live normal lives. Some donít even technically have scoliosis anymore with curves in the single digits.

    Have they had some patientís that didnít get better? Yes. Is this rare for them? They say yes and Iím now inclined to believe them. They point to compliance with bracing time, because not everyone keeps their kid in brace for the prescribed times. And even with good compliance, there could be some cases that donít work out for whatever reason. When we were there with our son, we talked to as many families as possible that had been coming for a while, and they were all seeing curve correction to some degree.

    Back to the question of why they do not have published research in peer-reviewed journals. They are only 10 years into this. To do studies that meet standards, they will have to have their braces electronically monitored for patient time-in-brace, just like previous studies of the Boston Brace and other braces. This will be expensive. They are working on a plan for this. In the mean time they are loaded with patients from all over the world and trying to hire to keep up.

    What we seem to have here is a really smart and capable guy with a sound knowledge of anatomy and physiology that has invented a method superior to any other. He happens to be a chiropractor. When he pointed it out to me, I realized that there is a lot in the medical literature that supports his method Ė relating to prolonged stretch on body tissues and nerve tension being a factor in scoliosis. Itís just that no one else has pieced it together and attempted a solution, or was capable of pulling it off.

    Are some chiropractors quacks? Sure. Are some MDs/surgeons quacks? Definitely. I gave this guy the benefit of the doubt, and he is legit.

  14. #14
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,298
    Dustin76, excellent post. Really nice. As a PT you are trained in a science. Chiro is not a science. I will respond to some of your points on your other thread.
    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."

Posting Permissions

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