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Thread: DD recently diagnosed -- any suggestions?

  1. #91
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    Quote Originally Posted by Pooka1 View Post
    I am hoping they solve tethering for adults in the future. One of my two daughters was left with a mid 20s lumbar curve. I wonder if even multiple tethers, serially replaced as they break, is better than fusion. Were it me, I think I would try that.
    This is secondhand, but I have heard that the docs who have been doing tethering the longest will only do three procedures in a lifetime because it's too traumatic to come in from the side and deflate the lung and move the psoas muscle. To the point where they're telling people who's tethers have broken twice to wait for stronger tethers to come on the market because they only have one revision left.

    Btw, the doc explained something that we have talked about before. He said that with bracing, they make the kids stand up super straight and that makes the spine a little less curved than it really is, even 24-48 hours out of brace. It really takes weeks or months of slouching (as we all do) for the spine to settle into it s natural curvature. So in his experience it's not uncommon to see braced kids "improve" by a few degrees while bracing, but then have that improvement go away and even get a few degrees worse in the follow up after cessation. He said that he specifically budgets in a ten percent "settling" progression when recommending surgery or not in kids who are bracing at maturity. (Hence his warning that at her next scan my daughter will likely be around 42-43T and 39-40L.)

  2. #92
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    Quote Originally Posted by Concerneddad View Post
    This is secondhand, but I have heard that the docs who have been doing tethering the longest will only do three procedures in a lifetime because it's too traumatic to come in from the side and deflate the lung and move the psoas muscle. To the point where they're telling people who's tethers have broken twice to wait for stronger tethers to come on the market because they only have one revision left.
    Good intel. Do they have to deflate the lung for a lumbar tether?

    Btw, the doc explained something that we have talked about before. He said that with bracing, they make the kids stand up super straight and that makes the spine a little less curved than it really is, even 24-48 hours out of brace. It really takes weeks or months of slouching (as we all do) for the spine to settle into it s natural curvature. So in his experience it's not uncommon to see braced kids "improve" by a few degrees while bracing, but then have that improvement go away and even get a few degrees worse in the follow up after cessation. He said that he specifically budgets in a ten percent "settling" progression when recommending surgery or not in kids who are bracing at maturity. (Hence his warning that at her next scan my daughter will likely be around 42-43T and 39-40L.)
    This is in keeping with the known fact that braces do not improve curves. They can only hope to hold it.
    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. #93
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    Quote Originally Posted by Concerneddad View Post
    Nope, he didn't say what the "fix" would be. Just that many women with this type and size of curves start noticing them in their early/mid 30s, but at that point they have or are having small children and jobs and it's just not convenient to have major surgery, so they wait until their 40s and get it fixed then when the kids are older and the jobs are more manageable.

    But he stressed that right now -- and for the foreseeable future -- her curves don't have any cosmetic issues, they don't have any pain, and if they do get worse it's going to be very slowly, so there simply isn't any reason to have surgery at present.
    Sounds right, or familiar should I say.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  4. #94
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    Quote Originally Posted by Pooka1 View Post
    Good intel. Do they have to deflate the lung for a lumbar tether?
    So I don't actually know the answer to this. I'd guess it probably depends on the lumbar level -- L1 is high enough that I'd suspect they do, whereas L4-L5 not. But I don't know. I do know that there are people who are ten years or so post-tethering surgery who have had multiple breakages and what they are saying is that the docs who have been doing it since the beginning are telling them to wait.

    As an aside, at some point in the next decade or so there is going to be a study looking at tethering and all of the attendant consequences -- whether tethered patients lose ROM or mobility, how long before breakage, whether it affects growth, etc., and I'm super curious what they find. It's really interesting.

  5. #95
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    Quote Originally Posted by Concerneddad View Post
    As an aside, at some point in the next decade or so there is going to be a study looking at tethering and all of the attendant consequences -- whether tethered patients lose ROM or mobility, how long before breakage, whether it affects growth, etc., and I'm super curious what they find. It's really interesting.
    Because they don't generally remove tethers, it seems like it is an open question whether adolescents retain the correction they gained during growth. But because the tethers all break, maybe that question isn't so open?
    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."

  6. #96
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    Quote Originally Posted by Pooka1 View Post
    Because they don't generally remove tethers, it seems like it is an open question whether adolescents retain the correction they gained during growth. But because the tethers all break, maybe that question isn't so open?
    I talked to our doc about this in one of our first visits. He said that from what he's seen the kids that get growth modulation from tethers have retained that correction ten years later. It's why he started offering it -- there's enough data now to know it works in the medium term (he was completely up front that no one knows what will happen 20+ years down the road). He was very skeptical that it would provide anything other than temporary correction in a mature spine, but I know that he's referred people to some of the docs operating on fully mature adolescents, so he's not *that* hostile to it. He did say that all tethers would break, so he's not pretending that they don't. I think he's probably a realist and if people are facing a long fusion down to L4 for their kids and they want to gamble, it's understandable.

  7. #97
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    Quote Originally Posted by Concerneddad View Post
    I talked to our doc about this in one of our first visits. He said that from what he's seen the kids that get growth modulation from tethers have retained that correction ten years later. It's why he started offering it -- there's enough data now to know it works in the medium term (he was completely up front that no one knows what will happen 20+ years down the road). He was very skeptical that it would provide anything other than temporary correction in a mature spine, but I know that he's referred people to some of the docs operating on fully mature adolescents, so he's not *that* hostile to it. He did say that all tethers would break, so he's not pretending that they don't. I think he's probably a realist and if people are facing a long fusion down to L4 for their kids and they want to gamble, it's understandable.
    This really makes this a thinker....you gain correction, remodulate, and essentially reset the progression clock when the tethers break. (on each specific level)

    With Sharon's question, on ALIF, in the lumbar, it's the retroperitonial sac, not the lung. For ALIF they use plates or blades to hold the sac over as they don't want to enter if possible. My vascular surgeon explained this to me as a positive thing....or 1 bonus point. (Positive laid over the stress of a highly invasive procedure) They did not deflate my lungs for my ALIF which was up to L1. I believe the lungs end right there at that level. Its close. The heart is right there also.

    I don't know about XLIF techniques. (assuming that these are the techniques for driving in lumbar tethering screws)

    My books are getting old now, and do not have much Minimally Invasive data. The entry points require a very technically oriented surgeon.....I am pretty sure Linda had an XLIF done, she might know how this works. Dr Anand in Los Angeles is a MIM scoliosis surgeon pioneer or proponent. Perhaps some searches using him might answer more questions on MIM scoliosis procedures.

    Thanks CD and Sharon for posting I elect both of you parents of the year award.

    CD, I wonder if increasing the diameter of the braided tether would help. Was this discussed? Or double tethering?

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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. #98
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    Six month update

    Her back actually improved a bit. The doc measured 37T/32L -- but he measured from the wrong vertebrae on the top curve! But but when I measure from the right one I get about the same (I get 38T/32L). And she's done growing (still Risser 4, but with a closing gap on both hips). So, he wants to take one last look in a year but thinks that will be it. He said he wouldn't recommend monitoring as an adult unless there are symptoms, and that if he had to bet, by the time the curves are big enough to consider surgery she'll be old enough (he guessed late 50s or 60s) that it won't be worth it unless it's causing symptoms. And she's completely done with the brace.

    Btw I asked if it was normal to see some improvement like that and he said that sometimes when you stop bracing and hit full maturity, the body settles in a way that actually corrects the curves slightly. He thinks it's mostly the body getting used to its adult frame. It's not super common but you do see it.

  9. #99
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    CD, Late 50's sounds about right. I progressed 20 degrees in 33 years. (both curves progressed equally) starting with 50 degree curves at age 16. She is starting off with smaller curves, so chances are her progression will be less. Unless pregnancy changes things...

    However, among women who had been treated with an orthosis, those with one or more pregnancies had a higher risk of curve progression > 5 compared with never-pregnant women:
    https://www.ncbi.nlm.nih.gov/pmc/art...egnant%20women.

    It's going to be hard to say if and when scoliosis pain (binding and aches) will present itself....I would imagine that pregnancy will act as a catalyst. Perhaps some of the ladies will chime in. It's been many years since I have seen anything here on the pregnancy scoliosis/pain progression matter.

    How much did she grow in the last year?

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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. #100
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    Quote Originally Posted by titaniumed View Post
    CD, Late 50's sounds about right. I progressed 20 degrees in 33 years. (both curves progressed equally) starting with 50 degree curves at age 16. She is starting off with smaller curves, so chances are her progression will be less. Unless pregnancy changes things...

    However, among women who had been treated with an orthosis, those with one or more pregnancies had a higher risk of curve progression > 5 compared with never-pregnant women:
    https://www.ncbi.nlm.nih.gov/pmc/art...egnant%20women.

    It's going to be hard to say if and when scoliosis pain (binding and aches) will present itself....I would imagine that pregnancy will act as a catalyst. Perhaps some of the ladies will chime in. It's been many years since I have seen anything here on the pregnancy scoliosis/pain progression matter.

    How much did she grow in the last year?

    Ed
    1.75 inches in the past year. Mostly up from what I can tell. Maybe the brace did something?

    She's listed as a 5'9" shooting guard, and that's just because she doesn't want to be too tall because then she won't be a guard. She's really 5'10" and a bit, but she won't admit it.

    She was recently listed as one of the top prospects in the '24 class in the state. If only they knew.

  11. #101
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    Wow congrats to your daughter on getting through treatment successfully and getting ranked in the state! Super.

    Was the latest measurement taken early in the morning? That is usually the smallest Cobb per what I have read. Apparently there is enough of a diel swing to be noted which surprises me.

    ps. I fell of my young horse in March while mounting and broke my back... compression fracture of L3. Totally my fault, not hers. Anyway my lumbar has a curve that is slightly north of 10* so I have scoliosis. :-0 I think it was like that and not due to the fracture. Twelve weeks off the horse to heal which was the longest I haven't ridden since I started riding again in 2003. The barn owner kept my horse in training during my hiatus which was wonderful... about 70 more rides on a young horse really moves the needle.
    Last edited by Pooka1; 11-20-2020 at 10:29 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."

  12. #102
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    CD, Before my surgeries, my height would fluctuate 2 inches throughout the day....after a hard day of skiing, Mini-Me would look down at me. ha ha (I would feel that short) Imagine what my curves were doing? I did get about a 5 degree "in brace" lumbar only correction at age 30 bracing with a Copes brace after a huge amount of effort. I was getting concerned about skiing mostly, that was the main reason to buy that brace. She must be relieved that she doesn't have to wear the brace anymore. I don't usually get involved in bracing threads, but one thing that can happen with bracing is kidney damage. I don't blame my kidney problems on bracing, but I can attribute my K stone to possible usage of long term NSAID usage.... (And lack of water as a dilution method)

    You want a shorter height measurement, do it late in the afternoon.

    Congratulations on her game and her scoliosis. I take it you have educated her on scoliosis....that probably is the main thing right now, accepting the diagnosis and moving on. It did not affect my skiing at age 16, if anything it made me push harder.

    Sharon, What did that fracture feel like? I have no idea. When you already have large amounts of scoliosis pain, injuries and perception of pain change.

    Now that your a scoli, you might consider bracing. (I couldn't help it) Ha ha

    My relatives have cut back on training Paso Fino's since it's so intensive....It takes a LOT of work to get a horse to deal you a blackjack. They also cut back on the dog training. When I was a kid, at one of the cattle ranches they had approx 100 full grown German Shepards all trained to the hilt. Orders from my Grandfather during the Mass Violencia period of Colombia.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  13. #103
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    Quote Originally Posted by titaniumed View Post
    Sharon, What did that fracture feel like? I have no idea. When you already have large amounts of scoliosis pain, injuries and perception of pain change.
    Intense focused pain. I still have pain/stiffness issues though I assume it is healed.

    Now that your a scoli, you might consider bracing. (I couldn't help it) Ha ha
    LOL! Always a card!

    My relatives have cut back on training Paso Fino's since it's so intensive....It takes a LOT of work to get a horse to deal you a blackjack. They also cut back on the dog training. When I was a kid, at one of the cattle ranches they had approx 100 full grown German Shepards all trained to the hilt. Orders from my Grandfather during the Mass Violencia period of Colombia.

    Ed
    I need a strong flexible lumbar to ride my very large young mare. You have to flex/flatten it to take the movement, give half-halts, and be able to influence the balance and stride with core/seat. I have no pain or stiffness riding, just at night after sitting for too long. I stand to work so that isn't a problem. Sitting on a chair for any length of time is a killer.

    It has been many months and the fact I still have pain/stiffness is becoming worrying that it will be long term despite the fracture being healed.
    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. #104
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    Yikes!

    Sorry to hear about the accident, Sharon. I have to confess that I'm terrified by horses. Anything that much bigger than me scares me unless it's safely in a zoo.

    I think all of her scans have been in the morning, partly because I scheduled them that way because I heard that curves get bigger during the day. And yes, she is noticeably shorter in the evening, especially if she has been playing a lot of basketball during the day. She's maybe an inch taller than me in the morning, and after a few hours of playing in the evening, we're eye level or she may even be a hair shorter. Of course that's probably more the couple of hours pounding and jumping on a hardwood court than the curves.

    Her back hurt for the first few months of weaning off the brace, especially because that was during May-June when all sports were cancelled. Once she started practicing/playing again 5-6 days a week the pain went away pretty quick. The doc said that is pretty common, which is why he prescribes PT to kids who aren't super active in sports and sports-like activities, but not in the kids who are.

  15. #105
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    Quote Originally Posted by Pooka1 View Post
    It has been many months and the fact I still have pain/stiffness is becoming worrying that it will be long term despite the fracture being healed.
    It's possible, but I would give it more time, it can take a long time for bone to fuse and soft tissues to heal. My 2nd year of my recovery was my "soft tissue" year.

    It's also hard to say that you didn't cause damage to other soft tissues. Post traumatic Arthritis or Osteoarthritis after a joint injury is pretty much a given. Scoliosis patients over age 50 suffer quite a bit from osteoarthritis, (On many levels) and it can be disabling.
    Since all my facets were removed and my discs are fused that solved that problem. (in my fused areas)

    I agree that the sitting positions on a horse are so critical....I did ride English saddle once (in 1980) with all sorts of instructions! Indoors, and it was great since everything worked well. I was steering with my knees with just the slightest pressure. I got the horse to canter. For a beginner, it was neat. It's good that you can at least ride now.

    I would imagine that horse falls do happen if one is riding often....which I agree with CD that it is scary. Sorry you had to experience this spine problem. They are never easy to deal with.

    There is a member here with horses down in the LA area that rides every day. She is a Dr Bederman full fusion pelvis patient. She is doing great and calls me every once in blue moon. She hasn't fallen and she is our age. There are also other full fusion members that have not done well with horses after surgery.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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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