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Thread: DD recently diagnosed -- any suggestions?

  1. #76
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    Pretty Profound

    Quote Originally Posted by titaniumed View Post
    I think its a good idea even if it "might" be influencing his decision.....The now or never urgency of the situation. You will have to see how he reacts.

    I wrote a post the other day (which I deleted) on the physical therapy subject which included around 30 different things I have done battling scoliosis over the many years, and at the end, I had "Beatles White Album"

    So, for those out there that are waiting for surgery, (Plenty of us) and maybe not old enough to know, or forgot, there is a Beatles song I think of, (Over the years now) and the beauty of art means you can decipher the words any way you like...

    https://www.youtube.com/watch?v=Man4Xw8Xypo
    This is a Paul McCartney composition
    Blackbird singing in the dead of night
    Take these broken wings and learn to fly
    All your life
    You were only waiting for this moment to arise

    Blackbird singing in the dead of night
    Take these sunken eyes and learn to see
    All your life
    You were only waiting for this moment to be free

    Blackbird fly, Blackbird fly
    Into the light of a dark black night

    Ed
    Nicely framed Ed.It is like closing your eyes & jumping off the highest cliff into the unknown -A leap of faith. I am 1 who not only remembers the Beatles but especially the White album- sure do miss them.

  2. #77
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    Quote Originally Posted by titaniumed View Post
    I think its a good idea even if it "might" be influencing his decision.....The now or never urgency of the situation. You will have to see how he reacts.
    I exchanged messages with the doc. He isn't considering VBT because she would be a marginal candidate at Risser 3 anyway, and he doesn't want to gamble on a borderline surgery for a thoracic curve in the mid-to-high 30s on a relatively mature kid. If it was the lumbar curve that appeared to be progressing* and it was a question of gambling to avoid fusion down to L3/L4, his opinion very well could be different. But the bottom curve appears to be holding. In her case, if we gamble that the top curve stays sub-surgical and lose, the downside (fusion from maybe T7/T8 to T12/L1) isn't as big of a deal, and given that she doesn't have a ton of growth left, he thinks there is a good chance we'll win the bet and she'll avoid surgery altogether.

    * I didn't say anything to him, but measuring and remeasuring her curves a bunch over the past few days, I'm really unconvinced that the top curve is progressing all that much. I keep on getting it at 34 or so from the first scan to 36 or so in the second. I really think this is an issue where he was a couple of degrees low back then and is a couple high now (both well within intra-observer error!), which is giving the appearance of modest progression where it's really minimal (if any).

  3. #78
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    Quote Originally Posted by Scared View Post
    Nicely framed Ed.It is like closing your eyes & jumping off the highest cliff into the unknown -A leap of faith.
    Its only unknown by one's choice. "Take these sunken eyes and learn to see".

    The lyrics are so simple yet so brilliant. And yes, there is a lot of faith required. I would not have made it without faith. This goes for parents and patients.

    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. #79
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    Quote Originally Posted by Concerneddad View Post
    I exchanged messages with the doc. He isn't considering VBT because she would be a marginal candidate at Risser 3 anyway, and he doesn't want to gamble on a borderline surgery for a thoracic curve in the mid-to-high 30s on a relatively mature kid. If it was the lumbar curve that appeared to be progressing* and it was a question of gambling to avoid fusion down to L3/L4, his opinion very well could be different. But the bottom curve appears to be holding. In her case, if we gamble that the top curve stays sub-surgical and lose, the downside (fusion from maybe T7/T8 to T12/L1) isn't as big of a deal, and given that she doesn't have a ton of growth left, he thinks there is a good chance we'll win the bet and she'll avoid surgery altogether.

    * I didn't say anything to him, but measuring and remeasuring her curves a bunch over the past few days, I'm really unconvinced that the top curve is progressing all that much. I keep on getting it at 34 or so from the first scan to 36 or so in the second. I really think this is an issue where he was a couple of degrees low back then and is a couple high now (both well within intra-observer error!), which is giving the appearance of modest progression where it's really minimal (if any).
    This person is a good surgeon, and he is probably glad you asked....

    Thanks for explaining about your daughter. It all sounds pretty good.

    How is she coping with the brace?

    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

  5. #80
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    Quote Originally Posted by titaniumed View Post

    How is she coping with the brace?

    Ed
    OK. She's not really the type to care about the aesthetics of it, so that part is easy. It's not comfortable, of course, and we sometimes have to nag her, especially on the weekends where the normal school day schedule is thrown off (she normally wears it from about 9:00 pm the night before until 4:30 pm the next day, then takes it off after school for basketball practice and dinner and the like), but she's pretty responsible about it. I remember reading a study about how older girls are generally much more compliant, which as the parent of a teenage girl, made total sense. They're a lot more (emotionally) mature and responsible, and there is usually a light at the end of the tunnel, so I totally get why 13 or 14 year-olds are normally more compliant than 10 year-olds.

    I guess the good news is that we're timing it so that she'll be able to stop bracing right before she starts high school. We even coordinated with the high school coach so that her (hopefully last while bracing) scan will be right before summer league/summer camps so that she'll get to do those without a brace. (Btw, her eighth grade season is going smashingly. She's leading the team in virtually every statistical category except rebounding -- where she's second, behind her 6'2" friend -- and they're 9-2 with two close losses to a much bigger school. She's also leading the competitive high school feeder league in scoring, and her three-point shooting percentage would rank in the top ten in the state if she was in high school.)

  6. #81
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    It sounds like she has adapted to the brace which is not an easy thing to do.....but then again, we do have that built in determination. (scoli kids)

    Congratulations on her sucessful sports endeavours....it was something that I also had on my mind during my teenage days.

    Scoliosis didnt stop me.

    I take it the next set of x-rays will be in about 6 months?

    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

  7. #82
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    Quote Originally Posted by titaniumed View Post
    It sounds like she has adapted to the brace which is not an easy thing to do.....but then again, we do have that built in determination. (scoli kids)

    Congratulations on her sucessful sports endeavours....it was something that I also had on my mind during my teenage days.

    Scoliosis didnt stop me.

    I take it the next set of x-rays will be in about 6 months?

    Ed
    Yes, six months. We’re really hoping to see curves below 40 (well lumbar for sure, if the top is a smidge over we won’t be too gutted) and a mostly mature spine.

    And yes, her determination is off the charts. Kid doesn’t know how to give up.

  8. #83
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    Six month update

    Doc had curves at 39T/37L. I have about the same (38T/36L). Slight progression (1-2 degrees), but well within measurement variance. Both hips now Risser 4. Left hip completely capped. Right hip about 85-90% capped. He wants her to start tapering off the brace and wearing it only at night for the next six months (he said a lot of docs would just say to stop altogether but he's conservative). He warned us that he expects the curves to "settle" 3-4 degrees with the reduction in and ultimately cessation of bracing, and she'll hit 100% maturity with the top curve in the low 40s and the bottom curve right around 40. He said those may or may not progress to the size where she needs surgery in her lifetime -- a lot depends on exactly how fast "slow adult progression" is (e.g., 1/4 of a degree per year versus 2/3 of a degree per year). But if they do, he thinks it wouldn't be until her late 30s or 40s.

    All in all, he was very pleased. It's a little anti-climatic to me. She has moderate-to-severe scoliosis, it very well may need fusion as an adult, but it doesn't now and almost certainly won't while I'm making her medical decisions.

  9. #84
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    Wow thanks for checking back, Concerneddad.

    Seems like you called it pretty close.

    We have had a few people here have even larger curves fail to progress although at least one of those cases was fused due to pain. If your daughter stays sporty she may hold there and not have pain.

    Good luck to her and good work on your part.
    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. #85
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    Quote Originally Posted by Pooka1 View Post
    Wow thanks for checking back, Concerneddad.

    Seems like you called it pretty close.

    We have had a few people here have even larger curves fail to progress although at least one of those cases was fused due to pain. If your daughter stays sporty she may hold there and not have pain.

    Good luck to her and good work on your part.
    Thanks! He specifically noted how balanced the curves were and how her rotation made her look like her curves were a lot smaller than they really are. He said that he wouldn't be able to tell that she even had scoliosis unless you told him, and based on her level shoulders and hips and the smaller humps, he'd guess the curves were more like mid 20s.

    She's just happy that she only has to wear the brace at night now. I tried to convince her to do a more gradual taper -- she had been wearing it 19-20 hours a day -- but the dirty look convinced me to shut up quickly.

  11. #86
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    We sure are a balanced bunch (as "S" patients)....other than the slight shoulder lean, nobody could tell I had scoliosis. We don't have the kyphosis problems, extensive leaning or plumb problems, or really huge rib humps. Lumbar humps can happen, but they are hidden.

    You can see the resiliance of the scoliosis curve. Even with heavy bracing you can have progression....I think it's good that she did the brace and had the interaction with her surgeon. We don't forget these things...And your right, you won't be making her medical decisions because it's a long way off.

    I suppose at least one more x-ray in 6 months?

    On the dirty look, it would have been something if you suggested a bracing tapering rate of 5 minutes per day. (smiley face) That would be only 9.6 months.

    There are times when wearing braces that when they have to come off, they have to come off as soon as possible, no matter what. You could be reciting Shakespeare on Broadway in front of a large audience, doing the delicate love scene, "that thou didst know how many fathom deep I am in love, but for now the brace must cometh off right away". Ha ha

    You did good with her....let us know how she does.

    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

  12. #87
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    Quote Originally Posted by titaniumed View Post

    I suppose at least one more x-ray in 6 months?
    Yes, he said two more xrays in 6 and 12 months to see where exactly it "settles" at 100% maturity, and then one more after that when she's 17 or 18 to see what it's been up to.

    It's funny. He specifically predicted that she'll want to get it fixed in her 40s after her kids are old enough that she can be incapacitated for several months. He said that's pretty common with women with her type of curve. Doing the math, I should still be alive but won't be happy about it.

  13. #88
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    Quote Originally Posted by Concerneddad View Post
    He specifically predicted that she'll want to get it fixed in her 40s after her kids are old enough that she can be incapacitated for several months. He said that's pretty common with women with her type of curve. Doing the math, I should still be alive but won't be happy about it.
    I was going to ask that question. But figured I would do Shakespeare instead. Sometimes you have to joke about these things to keep your sanity. Surgery is always a delicate matter. What did he say about fusing to the Pelvis?

    I was 10 degrees worse coming out of the gate with 50/50 curves at age 16. I suppose I could try to remember when any specific events happened as far as pain is concerned if you like. Up to age 28 was a breeze, things were not too bad. At age 28, I started Chiropractic in 1986. You also have to consider that I was in a different time frame in which things have improved quite a bit since then....

    I think the main thing is the pain. If you have some big curves around 50 degrees and have pain at age 40, you need to start thinking about things, see a scoliosis surgeon and start talks. If I had to re-do everything, I would have surgery before my extreme pain period set in in my 40s, and skip that whole process. Age 42 to be exact in my case.

    You have to assume that surgery will probably happen at some point. Starting up a scoliosis savings account now would be prudent. I just can't imagine what insurance is going to be like in 25 years. Scoliosis surgery is not cheap, and there are the recovery process financials to consider. It's nice to get set up so one gets paid through the whole process. Its takes foresight, and planning.

    There are not too many of us "S" patients out there. Or at least talking about it online. I can't even remember anyone here other than your daughter. I think we run around 25% of all scoliosis cases but don't quote me.

    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

  14. #89
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    Quote Originally Posted by titaniumed View Post
    I was going to ask that question. But figured I would do Shakespeare instead. Sometimes you have to joke about these things to keep your sanity. Surgery is always a delicate matter. What did he say about fusing to the Pelvis?
    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.

  15. #90
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    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.
    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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