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Thread: Another newbie with a daughter diagnosed in December

  1. #1
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    Another newbie with a daughter diagnosed in December

    Hi, I feel like I know you all since I’ve been reading for the last couple weeks without being able to post. My registration somehow got held hostage but that has all been straightened out thank goodness. So many of your stories sound like my own I feel at least like I’m not alone in all this. I’ve been reading Emy’s thread and feel like I have a kindred spirit somewhere out there. My daughter is 13 and a half and was also diagnosed in December. She has played softball since age 5 and started learning how to pitch at age 8. By age 10 we had to take her out of the regular recreation league and put her on a competitive team.

    She has injured her back twice while playing softball. The first time was at age 10 when she hurt the right side of her lower back while pitching. I attributed it to a muscle pull and we had her swim to rehab it. Within 6 weeks she was back to playing. Last summer she hurt her back again while batting. The week before had been a packed week for her so I attributed it to overuse and fatigue. This injury was on the lower left side of her back. I took her to the urgent care and they said it was a muscle pull. I mentioned to them that her scoliosis check at school had resulted in possible scoliosis. The NP lifted her shirt and basically said, nope, didn’t look like it to her. Because of how physical pitching is, she’s always been very muscular through the back and shoulders with her right side being bigger than the left because pitching is a one dominant side kind of activity. Hindsight being what it is, I now know that the area the NP said was swollen was actually the protrusion of the ribs. I also now recall my husband asking me during a game when she bent over to pick up a ball if her ribs always stuck out like that on her left side.

    After Thanksgiving she was at a friends house and jumped on the trampoline. She came home complaining of pretty bad pain. I took her back to Urgent Care where they did a thorough check and said yes, most likely scoliosis. We ended up at the ER a couple days later instead of waiting for an appointment with the pediatrician because her back was hurting her so badly. X-rays were taken and you know it isn’t a good thing when all the nurses are huddled around the monitor looking at the results. They said her curve was at 43* and referred us to a local neuro/spinal surgeon who doesn’t normally see kids but would make an exception and see us.

    When we went to the spinal surgeon we found out that she actually has an S curve, but he didn’t confirm the 43* given to us by the ER or give us any idea of what the other curve may be. I thought for awhile that all the pitching she has done for so many years may have made it worse, but from what I’ve read here, I now think it’s probably just the opposite. I think that all muscle she had in her back and core acted like an internal brace for her. Her pain didn’t really start or increase until a couple weeks after she stopped playing for the season when her activity level pretty much decreased to nothing. We usually make her swim to keep her active, but we had missed the signups. She was an early bloomer but really hasn’t grown much in the last year. I think that the lack of activity combined with her body trying to have one last hurrah of a growth spurt is what finally caused her to start having pain. I stopped growing when I was 14 and thought it odd that her growing had stopped as early as it did. She never really had growth spurts; she pretty much grew 2 inches every six months like clockwork.

    The funny thing is that when I found out about this the first thing I did wasn’t research treatments, bracing, different surgeries, etc. I looked for athletes that had overcome this. I found a couple, and actually reached out to a local girl that was diagnosed at age 15 after making the US Olympic Ski Racing Team. After her surgery in 2000 she went on to ski for her college for four years. She has been absolutely awesome and assured me that this isn’t the end of her dream to play college ball. I was able to pass her story along to my daughter to instill the hope back in her. I don’t know if she’d ever achieve that goal, but I don’t want her scoliosis to be the determining factor. She is now determined that she will be the next “bionic woman”.

    She doesn’t want to be put in a brace and we are hoping that she is too old for that option anyways, and if she really is at 43* it seems like that’s over what they usually brace anyways. I know it sounds crazy but we really just want them to tell us that she is a candidate for surgery and just fix it now and let her move on with rehabbing and hopefully get back to playing. The thought of the pain involved doesn’t scare her. There have been many Monday mornings when she was so sore from pitching over the weekend that she couldn’t get out of bed, so she’s no stranger to pain.
    I’m sorry if I rambled, but thanks for listening!

    Oh, and Ed, if you happen across this I left you a PM on the Scoliosis support site a few days ago before I could post here. You’ll see why.

    I see that i forgot to add that we have been referred to Shriner's - but the soonest appointment we could get is mid-February. It's frustrating when things only seem like an emergency to you because it's your kid that's in pain! So for now, we are just waiting and wondering what path they will want to go down with us. Any opinions would be helpful!
    Last edited by Breezemom; 01-14-2013 at 04:46 PM.

  2. #2
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    The silence in here is deafening. This brain dump was at the least therapeutic for me. I keep wondering if I’m somehow to blame for all of this. Did I push too hard too young? Did I let her push herself too hard? If only I had her checked sooner would things be different now?

  3. #3
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    Sorry!

    Hi and welcome! I intended to respond earlier. I'm sorry.

    I am sorry about the diagnosis.

    In re the pitching and scoliosis interaction, I am not aware of any connection in terms of sports activity worsening or hastening progression of a structural curve. Only a board certified experienced spine specializing in scoliosis can answer that in anything close to a definitive way. One-sided activity has been linked to functional (non-structural) curves if I recall correctly. Again, only the spine guy can say.

    The funny thing is that when I found out about this the first thing I did wasn’t research treatments, bracing, different surgeries, etc. I looked for athletes that had overcome this. I found a couple, and actually reached out to a local girl that was diagnosed at age 15 after making the US Olympic Ski Racing Team. After her surgery in 2000 she went on to ski for her college for four years. She has been absolutely awesome and assured me that this isn’t the end of her dream to play college ball. I was able to pass her story along to my daughter to instill the hope back in her. I don’t know if she’d ever achieve that goal, but I don’t want her scoliosis to be the determining factor. She is now determined that she will be the next “bionic woman”.
    This is a good way to approach it. I congratulate you. In terms of post op restrictions, it varies from surgeon to surgeon (moreso than patient to patient as far as I can tell) but in general very little is restricted after the recovery period. At least one surgeon doesn't even restrict kids in the immediate post-op period.

    She doesn’t want to be put in a brace and we are hoping that she is too old for that option anyways, and if she really is at 43* it seems like that’s over what they usually brace anyways. I know it sounds crazy but we really just want them to tell us that she is a candidate for surgery and just fix it now and let her move on with rehabbing and hopefully get back to playing. The thought of the pain involved doesn’t scare her. There have been many Monday mornings when she was so sore from pitching over the weekend that she couldn’t get out of bed, so she’s no stranger to pain.
    I agree with this thinking. A 43* is outside the standard of care for bracing for a reason.

    Your daughter's feelings about getting past scoliosis are TOTALLY understandable! My one daughter had a very short "contact time" with scoliosis between diagnosis and surgery and recovery. We are almost 5 years down that road but even as of a few years ago, she said she didn't really feel that episode was at all long. It was like a blip even in her short teenage life. I think she was the lucky one as her twin spent a year in a night-time brace which probably only delayed her surgery... not ideal as by that time she was in high school. But I can say that she was all in on the surgery after seeing how fast the recovery time was for her sister and how she looked completely normal. I think those two motivations helped her have an even shorter/easier primary recovery period (not counting the "hug" injury are a school dance 2.5 weeks post op). The first kid was so brave because she didn't know what to expect. The second kid knew exactly what to expect. Your daughter sounds very brave also! Excellent trait. :-)

    I see that i forgot to add that we have been referred to Shriner's - but the soonest appointment we could get is mid-February. It's frustrating when things only seem like an emergency to you because it's your kid that's in pain! So for now, we are just waiting and wondering what path they will want to go down with us. Any opinions would be helpful!
    Your daughter is sub-surgical so there is no huge rush (unless it is a TL curve in which case at least one surgeon is willing to operate below the normal threshold to save levels in the lumbar).

    Good luck.
    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."

  4. #4
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    Quote Originally Posted by Breezemom View Post
    The silence in here is deafening. This brain dump was at the least therapeutic for me. I keep wondering if I’m somehow to blame for all of this. Did I push too hard too young? Did I let her push herself too hard? If only I had her checked sooner would things be different now?
    Stop beating yourself up! This is claimed to be a multifactorial polygenic condition. There is no good evidence your daughter could have done anything or not done anything to change anything about her curve. Ask an experienced spine guy about this. Plenty of kids push hard when little yet nobody has identified a higher rate of structural scoliosis in that group. Rather the opposite... some sports have higher percentages of scoliosis among the top tier kids due to the advantage certain etiologies confer like marfans or marfaniod with swimming producing the most decorated Olympic athlete ever or Marfans conferring great height to a top volleyball player or other connective tissue conditions conferring extreme flexibility in top rhythmic gymnasts.

    You can't have checked for something you didn't know to check for. Nobody has to ever beat themselves up about this as there is no good evidence any conservative treatment had avoided surgery for those destined to become surgical. Nobody can ever be said to have missed the boat on this. That said, there are real time windows for things like vertebral body stapling (VBS) and tethering. If your daughter has enough growth remaining, you should check that out sooner rather than later.
    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. #5
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    Thanks for the reply and the kind words!! This has been one heck of a roller coaster ride so far and I don't do well with hurry up and wait. I'm not sure what type of curve she has, other than that there is one at the top and one at the bottom. Not a whole lot of help. I do have the X-rays, but no clue as to what I'm looking at other than one heck of crazy looking spine with a curve at the top and a curve at the bottom. The spine guy here wasn't exactly helpful other than with the Shriners referral. We don't have any specialists here. He did tell us it wasn't a pressing emergency, but her pain seems to be getting worse through her back, sternum, and knees. We have restricted her from sports until we know it's ok for her to participate. Running seems to be the worst.
    I do know that this is genetics for her. My mom has it and has had both hips replaced as a result. Her mom had it too. Maybe that’s why I’m beating myself up over this. I am now pushing my mom to see someone who specializes in adult scoliosis - she has been told that her spine is collapsing. I also found out that the brain surgery my brother had last year was for a chiari malformation which was undiagnosed as a kid and then was misdiagnosed as an adult.
    We will be going to Shriner's in Sacramento and from what I've researched, that seems like a pretty good place to go.

  6. #6
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    Quote Originally Posted by Breezemom View Post
    We will be going to Shriner's in Sacramento and from what I've researched, that seems like a pretty good place to go.
    I am relieved to read this. You need a specialist or two and some expert investigation on exactly what type of scoliosis you are dealing with. Shriners is the place.

    I would be interested in what they say about the heritability of Chiari.

    Good luck.
    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."

  7. #7
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    Oh boy. I’m just seeing this.....

    I have changed e-mail programs in all my computers and its been fun.....Sigh....This causes more trouble than scoliosis.....

    Lets talk..... You have my #......

    Try not to panic....Deep breaths!!!!!

    Ed
    49 yr old male, now 59, 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

  8. #8
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    hi breezemom im a former shriners patient from the sacramento shriners hospital. they are one of the best places in the counrty to get treat for scoliosis
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  9. #9
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    I just wanted to apologize for my very panicked posts the other day. You guys must think I’m crazy!! The diagnosis, on top of having your kid in pain all the time, on top of not having a clue of anything other than the diagnosis is very overwhelming – and then on top of it the thought of having to wait a month to find anything out just put me over the top! I am a very “like to feel in control” type of person.

    I am going to take her to see Ed’s surgeon next week for a first opinion (Thanks Ed!!!). It will be a huge relief to get some answers and understand why her pain is so severe.

    Thanks to everyone for the support and understanding, and Kennedy, thanks for the info on Shriners. It makes me feel good to know that we’ll be in great hands there!

  10. #10
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    Your welcome
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  11. #11
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    Breezemom, We don't think you are crazy or that your posts had too much panic in them - most of us can relate to many of your initial thoughts/feelings. As Pooka said, don't beat yourself up for not checking earlier...in fact maybe you can view it as a backwards blessing. Had you found it earlier (and even if you were checking there's no guaranty you would have found it while earlier/smaller because sometimes these curves jump seemingly overnight) - but it you HAD found it earlier, then you might have been faced with hard decisions regarding bracing etc. Sometimes it's nice to have a clear decision made for you by the circumstances. It's good that you will be following up with specialists and it's good that you've gotten the details on your family history which may have a bearing the decision for an MRI or not etc. Good luck!
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  12. #12
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    We went to see Ed’s surgeon here yesterday. The diagnosis at the ER of the curve being 43* was way off – they didn’t even measure the right part of her spine! She has a TL curve of 51* with a lower curve of 31*. Her rib cage is being pushed up and into her sternum and clavicle which is causing all her pain. She definitely needs surgery – he was very clear that a brace and/or PT would do absolutely nothing to correct it. He ordered an MRI to rule out anything else going on with her spine that could be causing her pain. I contacted her teachers – they will keep her out of the halls during passing periods and are giving up their chairs to her so she can avoid the hard plastic ones. I can’t tell you how much of a relief it is to know which direction we are headed in!! I do like the idea of this being a backwards blessing - no tough decisions to make about braces, etc.

  13. #13
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    Hey I am really glad you finally got an expert answer. In this scoliosis game, only very experienced specialists can play the game well.
    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. #14
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    Quote Originally Posted by Breezemom View Post
    We went to see Ed’s surgeon here yesterday. The diagnosis at the ER of the curve being 43* was way off – they didn’t even measure the right part of her spine! She has a TL curve of 51* with a lower curve of 31*. Her rib cage is being pushed up and into her sternum and clavicle which is causing all her pain. She definitely needs surgery – he was very clear that a brace and/or PT would do absolutely nothing to correct it. He ordered an MRI to rule out anything else going on with her spine that could be causing her pain. I contacted her teachers – they will keep her out of the halls during passing periods and are giving up their chairs to her so she can avoid the hard plastic ones. I can’t tell you how much of a relief it is to know which direction we are headed in!! I do like the idea of this being a backwards blessing - no tough decisions to make about braces, etc.
    like others have said I'm sorry about the diagnose. Being a teenager myself I understand how ur daughter feels. I just wanted to get on with my life and stop Worrying. Ur surgeon is right, the brace Won't do anything, I learned that the hard way. Out of the brace I was 53* and in the brace I was 47*. which Shriners hospital r u going to? And who us her surgeon? What are her levels? Do u by Chance know her risser number? Ur a great mom! Man, even after my surgery I still get the plastic chair! I'm going to use my surgery as an excuse to get that comfy chair.......
    Best of luck
    Kat
    Last edited by Kat3573; 01-22-2013 at 06:46 PM.
    "You never know how strong you are, until being strong is the only choice you have."~Bob Marley

    “There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with.”~Harry Crews

    3+ years post op
    Fused T4-L1
    Pre-op curve: 64*
    Now no more than 15*

  15. #15
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    Oh boy.....

    What is your daughter saying? I take it you have not set a date and are letting your daughter absorb all of this.....give her some time.

    Usually what happens is shock, denial, anger, asking questions like “why me”, then finally acceptance, in this order.

    There are not too many discussions about the psychological impact of diagnosis here. I know what I went through, and was in a cloud for a while and I know that I needed some time to accept things.....it was a ton of bricks. In time, that load does lighten up some, but it took me a while to simmer down from the anger phase. It also took me time to realize exactly what was happening, and of course wondered why?

    Maybe others will chime in on this matter since all of us will act differently.

    ================================================== =================================

    Education about scoliosis and communication are essential.....If she doesn’t want to talk about it, do it another day but having a full understanding is important. Read Dave Wolpert’s book. Its sold here on NSF. It’s a necessary read. I don’t have any copies since I keep giving them away.

    You have the correct data, and some direction. As much as I respect my surgeon and surgeons for pulling off difficult procedures, surgery is “usually” a last ditch effort.....once its done, its done. Please understand why I say this, then make an informed decision based on your knowledge and understanding. Even the best of surgeons can have outcomes that are out of their control since the human body is extremely complex. Learn about complication rates.

    This was not an easy post for me to write. I did this here and not on your e-mail to me as it is important for others to realize that we as scolis, especially in our teens can suffer silently. I was scared to death, and always wanted to know what was going to happen. This took a lot of faith over 34 years......

    Please remember that this was not your fault or anybody’s fault. Scoliosis happens.....

    Keep posting......ask any questions. There are great people here! What one person misses gets covered by another.....it’s the beauty of the forum.

    Ed
    49 yr old male, now 59, 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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