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Thread: Daughter just diagnosed! Help!

  1. #16
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    I think bas2101's brain knows the score. I think her heart has yet to accept it for whatever reason. She is clearly struggling and I'm sorry for that. I think her choices to date have not compromised her daughter's case but that would not necessarily be true of the next parent/kid which makes her post truly reckless.

    What you do with your own child is one thing. To completely mislead an innocent parent and unnecessarily torture a child with a brace is quite another. The odds are stacked way in favor of failure and bas2101 knew it but didn't type it. Unconscionable. There is a limit and this is over it by a mile.

    Outrageous behavior.
    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."

  2. #17
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    Bracing and Exercise

    It may be worth a consult with Beatriz Torres in California. She is a scoliosis patient herself, spinal fusion at age 19, licensed physical therapist, and fully trained in both the old and the new Schroth. http://www.scoliosispt.net/

    There is also a Dr. Moramarco who was once recommended to me by Dr. Weiss himself: http://scoliosis3dc.com/

    bty - good to see you CD.

  3. #18
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    Just because a claim isn't a published case, does not mean it cannot be substantiated or is untrue. Just because I mention successes does not mean that I am unaware of, or hiding the failures. I am quite aware of the many failures that exist in watching and waiting, bracing, and surgery. I was merely relaying that there do exist kids braced with moderate to severe curves and some (whose x-rays are attested to by orthopedic surgeons, not me) have had success with stabilization or reduction. It is possible that others may also have such success, even if the odds are against them, and I leave it to the parent to do further research and decide if they want to take that option. I certainly don't assume that anyone is going to make a decision based solely on my post. But, at least the option is out there. Every time you discuss the successes of your daughter's surgeries, do you include a disclaimer about all the things that could have gone wrong or that might go wrong in the future? No. And, no one expects you to.

    I never claimed Rigo has all of the answers or that he solved scoliosis. Where are you getting this from? He is a conservative scoliosis practitioner who has been treating patients for years, some with bracing success, some who have gone onto surgery. And, he will brace a low Risser, skeletally immature, flexible child with remaining growth, even if they have a moderate or moderate to severe curve. He is certainly not a fraud looking to swindle people's money. He is an expert in scoliosis and is very upfront about the possible outcomes of his patients and promises nothing. I don't think the U.S. surgeons are too dumb regarding Rigo's method of treatment, I just believe they are not all that aware of it. Just because the U.S. surgeons don't know much about a treatment, does not mean that it is not a viable option. There is a big world out there. No one has all of the answers with scoliosis. No one, or we'd all be banging that door down.

    In the above mentioned cases, there is evidence in hand, it's just not in your hand. Tell the mother how "unconscionable" she is for bracing her 14 year old daughter with a 48 degree curve, a girl who was told she had to have surgery (not Chris43, another mother) but whose curve is now in the low 30's. She is out of surgery territory and is now skeletally mature. Tell the mother how unconscionable she is for bracing her 8 year old with a mid-50's curve who was told she needed growing rods with later fusion, who is now in the high 30's three years later and under orthopedic care by an orthopedist who advocates for the Cheneau brace. You've already insinuated that my decisions are ridiculous, which to some they may be. But I do not see how having surgery at 12 1/2 when my daughter was Risser 0, pre-menarche, and 6 inches shorter (this was 2 1/2 years ago and she still growing) is more conscionable than trying bracing and keeping the option for surgery open for the future.

    Nothing brave or reckless about what I have typed. Just putting it out there. There is no reason for a mother with a 14 year old daughter (Chris43, or anyone else for that matter) NOT to know that this has worked for some kids in a similar situation. Does it mean it will work for her daughter? Who knows. Does it mean she even wants to make this choice? I can't answer that. But, at least she is aware of it and can decide for herself whether or not it is an option for her child. I would have killed to have this information when my daughter was at 48 degrees. Her curve reduced 8-10 degrees after being braced at 68T. I only wonder where her curve would have ended up if she were braced at 48T. Having options is facing reality, even when those options are not ideal. Closing doors is unconscionable.


    And, no, I am not "struggling," just taking it day by day.

  4. #19
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    Quote Originally Posted by bas2101 View Post
    Just because a claim isn't a published case, does not mean it cannot be substantiated or is untrue.
    That's what all the people who only have faith and no evidence say.

    And when you say surgeons might be unaware of something IN THEIR FIELD you are accusing them of being incompetent. All of them. That fails on its face.

    Next.
    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."

  5. #20
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    Quote Originally Posted by bas2101 View Post
    And, no, I am not "struggling," just taking it day by day.
    You are still obviously struggling with the bitterness over the realization that surgeons are the only game in town and they don't have an answer you personally like. Note that the fact that surgeons may not have all the answers do NOT mean any alternative purveyors do. That doesn't follow logically in the real world.
    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. #21
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    No bitterness, just believe that both surgeons and alternative purveyors in scoliosis treatment do not know all there is no know about this disorder, which is why there are options. Some options work for some, some for few, some for none.

    Disagreeing with you does not equal "struggle."

    The faith versus science discussion has been beaten to death on this forum. Not going there.

  7. #22
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    Quote Originally Posted by bas2101 View Post
    No bitterness, just believe that both surgeons and alternative purveyors in scoliosis treatment do not know all there is no know about this disorder, which is why there are options. Some options work for some, some for few, some for none.
    The fact that nobody knows all there is to know about scoliosis is obvious.

    It is not a logical stepping off point from there to conclude there are then options. Rather you would be on firmer ground to conclude that there are few options because of a lack of knowledge. You might also conclude there are "apparent" or "perceived" or "hoped for" options which really aren't options at all.

    To date, only watching/waiting and surgery have any clearly demonstrated evidence of efficacy. Denying this point is to admit being unfamiliar with the facts. That is not to say bracing or PT can't be shown in the future to be effective. It may be that these things are effective but just too damn hard to study and show it.
    Last edited by Pooka1; 07-07-2010 at 02:55 PM.
    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. #23
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    Quote Originally Posted by bas2101 View Post
    Disagreeing with you does not equal "struggle."
    You struggle with facts and reality, not me.
    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."

  9. #24
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    Thanks for responding!

    I'm not only new to the whole scoliosis thing, but I'm also new to computers.I'm not sure how to respond to each one of you individually.I'm going to assume you can all read this, as you responded to my last post. SNOOPY: Your story sounds so similar to mine. Life just changed so quickly with that diagnosis.I wrote that this disease is misunderstood, and you and SHERIE agreed.I was one of those people who knew a girl in Jr. High who wore a brace. I didn't know her well, so I never asked about it. My impression of scoliosis was that the worst case scenario was to wear a brace.I had no idea the brace was painful. I also had no idea that there was even such a surgery for this condition!Why aren't parents told about this and asked about this being in the family(my father had slight scoliosis-nobrace-exercises only-back in the 40s)when they have a baby.They tell us to watch our children for so many things these days they almost make you feel neurotic. For such a serious disease, it's not really out there in the media much.I think that absolutely has to change!!!I have found that nurses who find out my daughter has scoliosis have the best understanding of what your child may have to go through, but the average person just says things like,"So she has to wear a brace for a couple of years-big deal. Why are you so upset?"I really want to scream at those people! I don't know what can be done, but someone needs to take this and make it more public.Parents need to know what to look for. I thought my daughter was just standing in that teenage posture too. But she really didn't know what straight felt like.
    Anyway, thank you SHERIE for sharing the pictures of your daughter. She looks great!I hope she has a wonderful recovery.
    FINGERS CROSSED:I can't thank you enough for responding to me, especially since your daughter just had her surgery. I absolutely would love to speak with you in the future, after your daughter has recovered.I don't want to bother you now. My E-mail is Laundryfor5@aol.com.When she doesn't need you all of the time and you feel comfortable enough to spend some time writing,I'd love it.I really need to know from a mom how difficult, or how well the surgery went.Thanks!
    DDB: I love when you wrote "Remember to breathe"! YOU know me well. That is exactly how I feel. I must be alot like you because I think it's already too late to take your advice. I've been so pre-occupied and determined to find a way not to have surgery, that I think my daughter is now very afraid of that option. I don't know how much to tell her about the surgery. I don't know if I should be preparing her for that possibilty yet. The doctors are bracing her 41 and 48 curve, so I haven't begun to let the other option come into play yet.She knows it could happen, but she keeps saying she doesn't want it.That's probably from me obsessing about trying to exhaust every other option-proven or not proven.I can't believe you may have to go through the surgery a second time with your other daughter. OH MY GOSH-How do you find the strength?I hope your other daughter will not have to have the surgery, and can find a way to ease her pain some other way. Keep me posted.Best of luck!
    GRYFFINDOR:Thank you also for responding.It must be a very difficult time for you right now awaiting your daughter's surgery in Aug.There must be alot of pre-op procedures. How does your daughter feel about it? Does she really understand how difficult the recovery is? How do you prepare for it? I can imagine it stops your entire family in it's tracks. Siblings must also be affected. Do the surgeons let you plan these surgeries? I would imagine that most people would want the surgery done over summer vacation, so the child doesn't miss too much school. Is it an option? I ask this because in my own situation I have identical twin boys going into their senior year in high school. I was very busy trying to help them find the right colleges to apply to when this all happened to their little sister. Senior year is a very difficult and busy year especially if you have twins. I am trying to figure out if my daughter ends up needing surgery, would the doctors let us do it next summer? Does the surgery need to be done right away? I can't imagine trying to help my boys with applications and financial aid forms when their sister is recovering from that surgery. This is definitely life-changing for the whole family! I'll keep your daughter in my prayers. Good luck to you!
    POOKA1 and BAS2101:I feel like I've entered into a family fued here!I can tell that you are both very passionate about your experiences.POOKA1 the doctors are bracing my daughter with the 41 and 48 curve in a Boston brace for 22 hours a day. I had the feeling the doctor was doing that to appease me and give me and my daughter time to wrap our minds around what was happening.We will see him again in Aug. He said he will take two x-rays-one in the brace and one out of the brace.If he sees any progression at that time he will discuss surgery with us. He gave us a 20 % chance that the brace will work to prevent progression. I'll take it. I don't think exercise and the Schroth program could hurt.As most of you have said-try everything. You are a voice of reality though. Based on everything I've read and heard, my daughter may need that surgery in the end.I understand that. I don't think I'm ready to accept that though. I haven't gotten there yet.
    BAS2101: You are the voice of hope for me. I was getting really sad thinking that there was no way to avoid the surgery and then I read your response.I know there may not be alot of documentation advising exercise programs and claiming that bracing will work for everybody. But I do believe there are exceptions and success stories out there. It was nice to hear about them.I am not saying that surgery is out for us. I just wanted to see if anyone out there did have a conservative treatment that worked in their particular case. The one thing I realize now is that scoliosis is really an individual diagnosis, as each child's body is in a different stage of development,and each curve is so specific to that child. Different bodies, different bones, different muscles can each respond to different treatments in different ways.So you gave me hope-Thank you!POOKA1:I know most children with scoli end up with the surgery and the surgery is very successful. You are my reality check. Just dump a bucket of ice cold water on me when I start talking crazy. I do still need a little time to get use to all of this, so be patient with me. I need to know the facts, but I also need a little hope that this brace will do the job for my child. I'm hoping she's an exception to the studies.Thank you for all of the info you gave me. You definitely sound like you know what you're talking about!PS My daughter just started her period. Does that change her Risser? Are we better off now?I don't know if you can answer those,but I thought I'd try!
    Thanks again everyone for all of your kinds words and advice! I'll keep checking in.
    Chris

  10. #25
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    Hi Chris,

    Jamie was diagnosed with Kyphoscoliosis (both Kyphosis-forward curve-and Scoliosis) when she was 12 y.o. and was placed in a Milwaukee brace. We did our research on all the options before we saw the first orthopedic surgeon and we decided that being prescribed a Milwaukee brace would be the worst thing the doctor could tell us. Even though that's what the doctor told her, she never asked "why me?" I told her from day one that God chose her to have Kyphoscoliosis because she was a strong young lady and could not only handle it, but she was a person who would share her story and therefore educate people. I feel that is part of our responsibility as a family dealing with Scoliosis. That's one of the many reasons I'm still on this forum even though it's been almost 7 years since Jamie's diagnosis and 6 years since her spinal fusion.

    Like you've already discovered on your own, every child and every case of Scoli is different. You'll also learn that every doctor is different as well as every surgery. Trust your instincts. If you feel better trying a brace, go for it, it can't hurt, right? I did the same thing. Jamie tried two different braces and just couldn't adjust to either one and we realized early on that her curves were not going to stop progressing, but at least we knew we tried. With your duaghter's curves being so large already and just starting her period, wearing a brace might actually help hold the curve as it appears she still most likely isn't done growing. Make sure the orthopedic doctor is x-raying her hand to see if she is done growing. Most girls don't reach skeletal maturity until about 2 years after they start their period.

    Hang in there and remember to take care of yourself. Keep asking questions so you can make the most informed decision, no matter what that might be. You might want to reccommend SpineKids to your daughter. It is a forum similar to this one, but it is mostly kids and teens on the site.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  11. #26
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    Chris,

    Thank you for your thoughtful reply. I really wish the best for your daughter.

    Brooke

  12. #27
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    Quote Originally Posted by Chris43 View Post
    For such a serious disease, it's not really out there in the media much.
    It is serious for the 1 in perhaps 1,000 who need surgery. It is still serious for those who are braced because bracing is a HARD treatment and because some of these curves which are apparently held (or stay by themselves) below the surgical threshold at maturity nevertheless go on to reach surgical territory even as young adults.

    Only about 10% of people ever need treatment - the rest of the curves are too small. Many people have such small curves that they never realize they have the condition. Between 2% and 4% of the population has scoliosis but I've seen some say it is possibly 10% if you add in adult onset and degenerative cases. Because most people with scoliosis need no treatment and exceedingly few need surgery, it is actually rather benign I would say considering all cases and is consistent with why it can affect such a large population and yet most people still haven't heard of it.

    Anyway, thank you SHERIE for sharing the pictures of your daughter. She looks great!I hope she has a wonderful recovery.
    That is the work of an artist. He is one of the top surgeons in the world dealing with scoliosis.

    I am trying to figure out if my daughter ends up needing surgery, would the doctors let us do it next summer?
    If you have a top guy with several cases (because he is a top guy) and don't schedule it early enough, you might not get an optimal time like beginning of summer or over a holiday. You can plan for this.

    Does the surgery need to be done right away?
    It doesn't sound like you are in an emergency situation with your daughter. At 41/48, as I said before, unless there is progression, I doubt you will find a surgeon who will want to operate. She could hang there for months or years. That said, there seems to be a few surgeons who will operate earlier than the widely accepted thresholds to try to save levels. Again, I would ask the surgeon about this... it might matter if you can save some lumbar levels in terms of flexibility.

    Where is your daughter's curve? You may have mentioned this. If so, I apologize.

    POOKA1 the doctors are bracing my daughter with the 41 and 48 curve in a Boston brace for 22 hours a day. I had the feeling the doctor was doing that to appease me and give me and my daughter time to wrap our minds around what was happening.
    That would seem to be the correct conclusion if you look at the data that Concerned Dad posted.

    We will see him again in Aug. He said he will take two x-rays-one in the brace and one out of the brace.If he sees any progression at that time he will discuss surgery with us. He gave us a 20 % chance that the brace will work to prevent progression. I'll take it. I don't think exercise and the Schroth program could hurt.As most of you have said-try everything. You are a voice of reality though. Based on everything I've read and heard, my daughter may need that surgery in the end.I understand that. I don't think I'm ready to accept that though. I haven't gotten there yet.
    If your daughter doesn't mind the brace then no problem (other than cost). One of my daughters wore a brace. I thought that was a kick in the teeth because she went on to have surgery. My other daughter luckily escaped brace treatment. Her curve never moved less than 5* a month and even though she was in bracing range, neither surgeon wanted to brace her. I suspect they realize that fast moving curves are rarely if ever held by brace and they didn't want to torture her.

    POOKA1:I know most children with scoli end up with the surgery and the surgery is very successful.
    Actually, as typed above, it's the rare case that progresses to surgery. These cases are over-represented here on this forum because people are reaching out for help in dealing with it. Most of the rest don't need support nor even any treatment.

    The surgery is very successful and very safe, especially now with the real-time nerve monitoring. During surgery, they know if a nerve is being impinged and immediately back off. This has reduced nerve injuries to truly minuscule levels. And many/most nerve injuries that do occur heal completely as I understand.

    Kids bounce back... my kids returned to school after 3 weeks (Willow) and 3.5 weeks (Savannah). They both look and feel normal and scoliosis seems to be behind our family now. They are not expected to ever need any more surgery and are said to be back in the general population for risk all future back issues. I'll take that.

    I do still need a little time to get use to all of this, so be patient with me. I need to know the facts, but I also need a little hope that this brace will do the job for my child. I'm hoping she's an exception to the studies.Thank you for all of the info you gave me.
    Everyone understands this. I'm sorry for every patient and parent who has to deal with this. It is mind blowing. Your daughter could be an exception. As I mentioned earlier there are 3 cases just on this group about people who got to the low 50s and hung there for a few decades (NOT due to bracing in at least one case). But you have to consider the damage that is done just having a curve due to uneven vertebral loading over time. It seems for even moderate curves, if the progression doesn't get you the ancillary damage and associated pain might. It's hard to know if anyone is ever out of the woods though certainly some people are. Identifying them is the trick.

    PS My daughter just started her period. Does that change her Risser? Are we better off now?I don't know if you can answer those,but I thought I'd try!
    As Mary Lou said, it's usually 2 years after menarche when the skeleton is mature. But it is variable enough that you should get the hand radiograph like Mary Lou said in order to get a true idea of maturity. Risser is inexact.

    Good luck. It's a hard road but still doable. You and your daughter will handle this and be stars.
    Last edited by Pooka1; 07-08-2010 at 11:06 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."

  13. #28
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    Quote Originally Posted by Chris43 View Post
    Within three weeks we went from "mild" to "significant" to "severe" and in need of surgery!Why was there such a large difference in the reading of the x-rays?Was it the way my daughter was standing for each x-ray?
    Chris, I understand what you feel. My 16 years old daughter has a thorax lumbar curve of 56º as it can be seen in the x rays of February 2010, but it was 47º in August 2009 and 57º in February 2009. Nobody knows what happened.
    When she was 14 y a surgeon told us she was 43° but in fact she was 54°.
    We are also trying non surgery ways. I can talk to you about great therapies during growth (and it seems in adults too) as Fed Method, but I think you have a great option with Beatriz Torres (as Mamamax said to you) who not only knows about Schroth but is also a really good person. Take in mind that surgeons only know about braces and surgery, but other professionals also knows about scoliosis, for instance PT knows about managing connective tissues, ostheopats about structural issues.. but nobody knows enough about scoliosis!.
    I think that brace is a good option (specially combined with other alternatives), but chances are greater if it is used under EDF concept http://www.scoliosis.org/forum/showthread.php?t=10607. I don’t want to confuse to you; it’s only an opinion from someone without any medical knowledge.

    It's difficult, but try to think and feel by yourself. Anyway you are not alone.

  14. #29
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    Chris 43
    I feel the anguish in your post and it brings back the memories of when my daughter was first diagnosed. I have a few thoughts to offer: take them with a grain of salt because each circumstance is different

    Yesterday I posted a chart from a paper written by Sanders in 2008 and I made the comment:
    But the likelihood of surgery in the future seems to be VERY high for a skeletally immature 48 degree curve (see attached).

    There is an accompanying table that is necessary to reference: it shows the different skeletal maturity stages.

    You originally said your daughter was pre-menarche, Riser 1, and 14 years old. You updated that to say that she just started menarche. What is important to note is that Riser sign, Age, and menarchal status are NOT the best predictors of skeletal maturity. A hand xray showing the changes in the joints of the fingers is much more reliable.

    Nevertheless, that MAY put her in Stage 6 or so on the attached chart. Although this chart is based on a VERY small sample size (note the large confidence intervals), it suggests the possibility that her curve may not progress (which is in contrast to what I cited yesterday).

    This does NOT mean bracing will help hold the curve. I take this to mean that DESPITE bracing, the curve may hold (though I respect the fact that others would disagree).

    I just wanted to post this here to correct my miss-statement about the certainty of surgery and give you some more food for thought.

    Perhaps you might consider some advice of having a physician assess skeletal maturity based on a hand xray and also address your concerns about the difference in the two most recent x-rays (the one showing 33 degrees and the one showing the more concerning 48 degrees) There is a world of difference between the two readings: if the 33 is accurate then, at 14, she may be “out of the woods”. Make sure you are seeing someone who specializes in scoliosis.

    Many months ago I offered a reading list discussing bracing
    If you would like copies of any of the technical papers let me know.
    There are other opinions offered in the entire thread you may want to read

    As you have gathered, it is a HUGELY controversial subject.

    For me, I would NOT put my 14 year old daughter w/ a 48* curve through the burden of bracing with the knowledge that it only had a very small chance of helping prevent surgery (and you can read a summary of our experience here)
    If she had a 25 degree advancing curve and were 12, I might have a different opinion. Perhaps, in the end, since she is 14 and since evidence suggests compliance w/bracing is important, you might encourage her to participate in making the decisions.

  15. #30
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    Quote Originally Posted by Chris43 View Post
    GRYFFINDOR:Thank you also for responding.It must be a very difficult time for you right now awaiting your daughter's surgery in Aug.There must be alot of pre-op procedures.

    There were a few pre-op procedures. So far she's had a CAT scan, an MRI, various X-Rays, 3 visits with 3 different orthopedic specialists (didn't like the first two), and an echocardiogram due to a heart murmer (everyone on my side of the family has it). All of the tests came back fine...except for the scoliosis diagnosis and it's rapid progression.

    How does your daughter feel about it? Does she really understand how difficult the recovery is? How do you prepare for it? I can imagine it stops your entire family in it's tracks.

    My daughter is actually excited about the surgery. She's done probably more research on this subject than I've been able to. We've viewed together post op photos and discussed what we see in them. She's even gone so far as to watch an actual surgery online. Personally, I can't do that.

    We've been discussing recovery a lot due to her surgery running into the upcoming school year. She HATES taking pills and that's going to be a hurdle that we'll have to get over.

    Both my daughter and I have been preparing ourselves for this journey. My husband, on the other hand, prefers to stick his head in the sand. We're working on trying to get him more involved so that he doesn't completely lose it when we're at the hospital. He doesn't handle medical situations well.


    Siblings must also be affected.

    I'm fortunate in that I had my children 7 years apart. My daughter having the surgery is my youngest. My oldest daughter is 21 and has a child of her own. She had her own medical situation as she was born 3 months premature. She spent the first 3 months of her life in a Neonatal ICU. Luckily, she does not have scoliosis (then again, neither does anyone else on either side of our family so this is really out of left field for us).

    Our biggest hurdle with her was trying to make her understand that this wasn't a cosmetic surgery and was absolutely necessary to improve her sister's condition. I still don't think she fully grasps what we're about to embark on, but, she has her own apartment and her own family to worry about.


    Do the surgeons let you plan these surgeries? I would imagine that most people would want the surgery done over summer vacation, so the child doesn't miss too much school. Is it an option? I ask this because in my own situation I have identical twin boys going into their senior year in high school. I was very busy trying to help them find the right colleges to apply to when this all happened to their little sister. Senior year is a very difficult and busy year especially if you have twins. I am trying to figure out if my daughter ends up needing surgery, would the doctors let us do it next summer?

    We're going through the Shriners Hosptial in Salt Lake City, UT and are pretty much at the mercy of their availability. Acceptance into their program was absolutely necessary for us as we do not have any health insurance and our state can't decide if we're poor enough for Medicaid.

    If you have private insurance, you are still going to be at the mercy of the surgeon's schedule but you should have some freedom in choosing a surgery date if it comes to that.

    As for school, that's a thorn in my side. Last year, after my daughter's diagnosis and having to go to several different medical appointments, her high school decided to sic their truancy officers on us......even though we had provided them with several doctors notes. It took the threat of our suing them for discrimination due to our daughter's disability (yes, it is considered a disability) to get the to ease up. They kept sending us letters threatening to send us to jail!

    This coming school year starts the first week of August. Her guidance counselor, who was our advocate at her school, was laid off at the end of the last school year. He was able to set us up with her schedule for this year and provide us with the teacher's names. He said she did not qualify for homebound instruction due to the number of days she will be missing will be under 60 (even though the district's website clearly states 30). So, she'll be going to school for the first two weeks prior to the surgery.

    I'm going to set up a meeting between all of her teachers, school principal, school nurse, guidance counselor, attendance clerk, truancy officers and vice principal to make sure that we have a complete understanding of how the school year is to progress. Her surgeon has provided us with a letter stating she would be out of school for 6-8 weeks. I've already emailed all of the teachers and informed them of the situation and asked that they start providing her with ALL of her homework from late Aug through the end of Oct from day 1 so she can get started on all of her assignments prior to leaving for surgery. I haven't heard a word from any of them.

    My goal is to have her recovery period as just that....time for her to recover. She won't be able to do any school work, much less turn it in, while she's in the hospital. It will likely be at least 2 weeks after we return home from SLC until she'll be up to attempting any assignments.

    For the time she's at home we're supposed to go to the school each week and pick up and turn in her assignments. I'm going to try to streamline this into emailing everything back and forth. We have a scanner and can scan her assignments and email them back to the teachers. Hopefully, her teachers will allow us to do this.

    In all honesty, I'm starting to second guess myself on the school issue and am beginning to wonder if it might be more advantageous for her to skip this upcoming semester. But, each time I've brought this up with our daughter she's dead set against it. She plans on graduating early and doesn't want to screw up those plans.

    At this point, it's going to be one of those wait and see issues. We should know more after I set up that meeting with all of the school officials.


    Does the surgery need to be done right away? I can't imagine trying to help my boys with applications and financial aid forms when their sister is recovering from that surgery. This is definitely life-changing for the whole family! I'll keep your daughter in my prayers. Good luck to you!
    Chris
    The surgery timing is going to be entirely dependent on your daughter's condition. If her curve begins to progress rapidly you may need surgery more quickly to avoid other medical complications.

    My sincere recommendation to you is to not let it progress to the point where your daughter is in pain. This is where our journey started.....with a visit to the ER due to severe back pain. She had complained a little over the summer about mild back pain but we didn't think much about it. A few months later she was curled up in a ball on her bed crying due to the pain in her back. The ER visit is when we first found out she had scoliosis.

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