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Thread: DD recently diagnosed -- any suggestions?

  1. #1
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    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
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    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 60, the new 55...
    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

  3. #3
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    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
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    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 60, the new 55...
    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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    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
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    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 60, the new 55...
    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

  7. #7
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    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
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    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
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    I would mark her height in a closet and date it. Do this in the morning as we are shorter at night....

    I have been glancing at Dr Harms site and learned that scoliosis patients with S curves don't have the typical sagittal problems of T and L curve patients. Perhaps this is a benefit since abnormal sagittal problems (Kyphosis, Lordosis) can complicate matters. The side views are more important. As you can see in my signature below, I have a great looking side view. When I do my photos and my x-rays, I always request taking the shot from my "good" side. (scoliosis radiology room joke) Ha ha I have shot a crazy amount of x-rays in my lifetime. With the CT's and surgical flouroscopy, I've been nuked. I don't glow though...I've gotten more radiation from high altitude skiing.

    Scroll down for double curves
    http://www.harms-spinesurgery.com/sr...m=harms.SKO08E

    Sounds like she is growing like a weed which is like a spinal wildfire..... Its hard to tell what is going to happen. I wouldn't expect too much out of the brace....growing too quickly makes bracing difficult. When braces don't fit correctly, that presents problems.

    This surgeon will shoot his own x-rays. They like to see old dated x-rays and data, that helps, but they shoot their own. It would be good to get copies burned to disc. The digital format are nice since you can zoom in. They are just way better than old school films. They should be full x-rays, bottom of chin to top of legs.

    I would not sway your surgeon and insist on anything. Go in blind, and let him do his thing.... A general rule of thumb is that surgery is always a last ditch effort, when in doubt do nothing. Do no harm. With that thought in mind, let him think about her case, (you cant expect an accurate answer in 10 minutes,) and then ask how to proceed and at what frequency....Should we shoot an x-ray in 3 months? Is tethering an option?

    Ask if its ok to ask questions and see if you can get an e-mail address of his nurse, assistant, or PA. This will come in handy later as questions will surface. Keep any questions short, just 2 or 3 at a time, don't write a book since some medical questions can be really hard to answer, if not impossible.

    Even though tethering is exciting, things can go wrong with ANY surgery. Complications only matter when they happen to you. We do see a few of those around here.

    It helps to be tall for basketball.....One of my jokes is that it helps to be really short as a powder skier. That way, every day is a powder day! One of my skiing partners years ago was 6'10" tall. He was a great partner because if he crashed in 3 feet of powder, there would still be 5 feet above and much easier to find. The math has to be off to make the joke better....(smiley face)

    Let us know what happens. Calm blue ocean....

    Ed
    Last edited by titaniumed; 09-08-2019 at 12:49 PM.
    49 yr old male, now 60, the new 55...
    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

  10. #10
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    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 60, the new 55...
    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

  11. #11
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    I don't know what they patented because Lonner says ASC = VBT.

    Based on the website, it seems that they have a slightly different surgical site and that they do osteotomies if necessary. Other than those things both are tethering.
    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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    Quote Originally Posted by titaniumed View Post
    I also wonder how they know when a tether breaks. I wonder if radiopaque markers on tethers would help?
    There's no way to know other than the curve re-occurring or the patient having more surgery.
    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

  13. #13
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    Tough day today, I really feel the weather changes and temp drops with neck oriented fatigue, and slight dizziness and slight headache. Not pain, just wiped out. Had to turn the heater on here.

    In Adults, If the tethers really are breaking, it seems to me like it would be a tough decision to proceed. Assuming they break, what's the plan? If the tethering plan is scrapped and fusion is necessary, do you remove the tethering screws from the side and then continue with a posterior?

    Osteotomy in a "moving" tethered spine does sound scary........I sure would want clarification on this to make a decision.

    I also would like to know exactly what ASC means. From what I understand, ASC for adults is where they "correct and then tether", vs "tether and correct" through growth in kids. But I am not sure if this correct...

    Ed
    49 yr old male, now 60, the new 55...
    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

  14. #14
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    Quote Originally Posted by titaniumed View Post
    Tough day today, I really feel the weather changes and temp drops with neck oriented fatigue, and slight dizziness and slight headache. Not pain, just wiped out. Had to turn the heater on here.
    I am so sorry you are having these symptoms, Ed. I hope they resolve soon.

    In Adults, If the tethers really are breaking, it seems to me like it would be a tough decision to proceed. Assuming they break, what's the plan? If the tethering plan is scrapped and fusion is necessary, do you remove the tethering screws from the side and then continue with a posterior?
    I think they must be doing osteotomies on adults if they ever have a hope of holding the straightness or even preventing progression. But they are not clear about what they are doing. Lonner says ASC = VBT so any difference claimed must be in the details. Both are tethering.

    Osteotomy in a "moving" tethered spine does sound scary........I sure would want clarification on this to make a decision.
    I hope they publish. I am assuming they are doing that because there is no other way to correct an adult spine without the tether snapping immediately I imagine. I obviously don't know if course.

    Maybe Burdle knows what the deal is with adults and whether virtually all will get osteotomies with tethering.

    I also would like to know exactly what ASC means. From what I understand, ASC for adults is where they "correct and then tether", vs "tether and correct" through growth in kids. But I am not sure if this correct...

    Ed
    I think they are doing osteotomies.
    Last edited by Pooka1; 09-16-2019 at 06:45 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
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    Quote Originally Posted by Pooka1 View Post
    I am so sorry you are having these symptoms, Ed. I hope they resolve soon
    Thanks Sharon..... I don't know what to say other than that symptom's are the result of suffering organs.

    That was Charcot who said that in the 1800's The founder of modern neurology.

    https://en.wikipedia.org/wiki/Jean-Martin_Charcot

    Ed
    49 yr old male, now 60, the new 55...
    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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