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Thread: Scoliosis diagnosis-13 year old daughter

  1. #1
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    Jun 2012
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    Scoliosis diagnosis-13 year old daughter

    Hi everyone! So glad i can finally post. I've been reading posts here and waiting to be able to post since my daughter's diagnosis. Well here is her story.

    At the end of April the school nurse calls me to let me know that Ashleigh failed her scoliosis screening. Apparently she felt Ashleigh's scoliosis was bad enough to warrant a phone call home plus a letter home. She suggested i get her in to see a doctor. So i called our family doctor and we went in a week later.

    He took a look at her back and felt that the nurse made a correct diagnosis, but sent us for x rays to confirm it.

    A day later the doctor calls our house and says that yes she does have scoliosis. I had been reading up and knew that scoliosis curves were measured in degrees. So i asked what the degree of her curve was. He told me 40 degrees. They were going to call and get her in with a pediatric orthopedist.

    The orthopedist appt wasn't for 2wks. So of course we read and read and read. We knew that based on a 40 degree curve she would have to wear a brace. But we didn't know what kind, because we didn't know where on the back the curve was located. We looked at different braces and watched youtube videos of kids wearing braces.

    We finally go see the orthopedist. I had picked up Ashleigh's x rays to take. The orthopedist examines ashleigh's back and of course she has tell tale signs of scoliosis. right hip sticks out further than left hip, and when she bends forward her left shoulder is humped up more than her right shoulder. They decide to re-do the xrays because the original ones are hard to read, and only done at one angle and they want several angles.

    New x rays show not 1 40 degree curve. But 3 curves. First curve up by her neck (i don't know technical terms yet) is between a 20-30 deg curve (i wasn't really focused on that one.) 2nd curve in the middle is the largest at 55 degrees and last curve at the bottom is a 45 deg curve. So no brace for us and we are probably going with surgery. They want to give us time to think about the surgery come up with questions, and we have another appt with the orthopedist (he would also be the one performing the surgery) on July 6th. He said we could pick when we wanted it done, since Ashleigh is having no back pains or other problems associated with the scoliosis. We were thinking during the winter when marching band is through. This is her first year in marching band, and she's been looking forward to joining for the past 3 years.

    I am nervous, but not about the surgery. I am mainly nervous because she is a type 1 diabetic. I am afraid they'll forget to test her sugar during the surgery, she'll go low. Or while she's in the hospital they'll give her to much insulin or not enough insulin. She's on an insulin pump, i'm afraid they'll make her go off her pump while she's hospitalized. She has an appt with her endocrinologist on July 4th, so i'm going to discuss with them how the hospital handles diabetes care for surgery patients. Her endo is located in the same children's hospital where the surgery will be performed.

    Chris mom to 4 girls 13 year old daughter with Type 1 diabetes and Scoliosis.

  2. #2
    Join Date
    Jan 2008
    Location
    NC
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    Welcome Chris. Glad you joined the forum. I'm sorry about the diagnosis.

    We have another woman on here with a daughter who has Type 1 and scoliosis. Her screen name is BigBlueFrog if i remember correctly. You may want to send her a private message as she doesn't post much any more. Her daughter did not need surgery but she probably has some tips anyway.

    Also, you should go over the fact of the Type I with everyone and their mother who is involved in your daughter's care in the hospital. That is everyone who enters the room for any reason. Every nurse, every intern, every orderly, etc. etc.

    By the way, if the 40* was correct, that is at the top of the bracing range and it would not be the standard of care to brace that curve to my knowledge. Bracing is not done at 40* and above for a reason... it will be ineffective and tortuous for no reason. It's not ethical.

    Make sure you have a surgeon who does a lot of scoliosis cases and not just a general orthopedic surgeon.

    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."

  3. #3
    Join Date
    May 2012
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    13
    o
    Quote Originally Posted by madileigh View Post
    Hi everyone! So glad i can finally post. I've been reading posts here and waiting to be able to post since my daughter's diagnosis. Well here is her story.

    At the end of April the school nurse calls me to let me know that Ashleigh failed her scoliosis screening. Apparently she felt Ashleigh's scoliosis was bad enough to warrant a phone call home plus a letter home. She suggested i get her in to see a doctor. So i called our family doctor and we went in a week later.

    He took a look at her back and felt that the nurse made a correct diagnosis, but sent us for x rays to confirm it.

    A day later the doctor calls our house and says that yes she does have scoliosis. I had been reading up and knew that scoliosis curves were measured in degrees. So i asked what the degree of her curve was. He told me 40 degrees. They were going to call and get her in with a pediatric orthopedist.

    The orthopedist appt wasn't for 2wks. So of course we read and read and read. We knew that based on a 40 degree curve she would have to wear a brace. But we didn't know what kind, because we didn't know where on the back the curve was located. We looked at different braces and watched youtube videos of kids wearing braces.

    We finally go see the orthopedist. I had picked up Ashleigh's x rays to take. The orthopedist examines ashleigh's back and of course she has tell tale signs of scoliosis. right hip sticks out further than left hip, and when she bends forward her left shoulder is humped up more than her right shoulder. They decide to re-do the xrays because the original ones are hard to read, and only done at one angle and they want several angles.

    New x rays show not 1 40 degree curve. But 3 curves. First curve up by her neck (i don't know technical terms yet) is between a 20-30 deg curve (i wasn't really focused on that one.) 2nd curve in the middle is the largest at 55 degrees and last curve at the bottom is a 45 deg curve. So no brace for us and we are probably going with surgery. They want to give us time to think about the surgery come up with questions, and we have another appt with the orthopedist (he would also be the one performing the surgery) on July 6th. He said we could pick when we wanted it done, since Ashleigh is having no back pains or other problems associated with the scoliosis. We were thinking during the winter when marching band is through. This is her first year in marching band, and she's been looking forward to joining for the past 3 years.

    I am nervous, but not about the surgery. I am mainly nervous because she is a type 1 diabetic. I am afraid they'll forget to test her sugar during the surgery, she'll go low. Or while she's in the hospital they'll give her to much insulin or not enough insulin. She's on an insulin pump, i'm afraid they'll make her go off her pump while she's hospitalized. She has an appt with her endocrinologist on July 4th, so i'm going to discuss with them how the hospital handles diabetes care for surgery patients. Her endo is located in the same children's hospital where the surgery will be performed.

    Chris mom to 4 girls 13 year old daughter with Type 1 diabetes and Scoliosis.

    I can't believe how similar our stories are. I have a 13 year old girl, failed her test at school, got a letter in the mail, took her to the Dr, got xrays and 3 curves as well. Xrayed at ortho and found that her largest curve was worse then original xray. Largest one is in her lumbar area and 2 thoracic curves. My daughter has mild autism. I was for sure when I took her to the ortho this past friday that we were going to be leaving with news of surgery. They discovered a leg length discrepacny and we are going to try a lift. We are in another 6 week waiting period to get the lift and then go back and have another set of xrays to see if the lift has an impact on the curves. I am so hoping that there is. I am still amazed that I did not see how crooked she was - I see it now.

    I was just reading your post to my husband and he thought it was something that I posted about our daughter. Such similiar stories.

    PS I was in the marching band in school too! Played the clarinet. What instrument does your daughter play?

    Good luck with every thing!!!!

    Terrie

  4. #4
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    Jun 2012
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    Quote Originally Posted by Pooka1 View Post
    Welcome Chris. Glad you joined the forum. I'm sorry about the diagnosis.

    We have another woman on here with a daughter who has Type 1 and scoliosis. Her screen name is BigBlueFrog if i remember correctly. You may want to send her a private message as she doesn't post much any more. Her daughter did not need surgery but she probably has some tips anyway.

    Also, you should go over the fact of the Type I with everyone and their mother who is involved in your daughter's care in the hospital. That is everyone who enters the room for any reason. Every nurse, every intern, every orderly, etc. etc.

    yes thinking perhaps a sign near her bed stating that she has type 1 diabetes might be a good idea.

    By the way, if the 40* was correct, that is at the top of the bracing range and it would not be the standard of care to brace that curve to my knowledge. Bracing is not done at 40* and above for a reason... it will be ineffective and tortuous for no reason. It's not ethical.

    ok. I was just basing the bracing on what we read on the internet that they brace from 20-40. Then starting at 50 surgery is recommended. Either way no bracing.

    Make sure you have a surgeon who does a lot of scoliosis cases and not just a general orthopedic surgeon.

    Yes. He's a pediatric orthopedic surgeon. he told us he performs around 100 of these surgeries per year. That sounded like a good number to me. Is it?

    Good luck.
    *my answers in bold

    Chris mom to 4 girls. 13 year old daughter with scoliosis and type 1 diabetes

  5. #5
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    Jun 2012
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    Quote Originally Posted by 4stoffels View Post
    o


    I can't believe how similar our stories are. I have a 13 year old girl, failed her test at school, got a letter in the mail, took her to the Dr, got xrays and 3 curves as well. Xrayed at ortho and found that her largest curve was worse then original xray. Largest one is in her lumbar area and 2 thoracic curves. My daughter has mild autism. I was for sure when I took her to the ortho this past friday that we were going to be leaving with news of surgery. They discovered a leg length discrepacny and we are going to try a lift. We are in another 6 week waiting period to get the lift and then go back and have another set of xrays to see if the lift has an impact on the curves. I am so hoping that there is. I am still amazed that I did not see how crooked she was - I see it now.

    I was just reading your post to my husband and he thought it was something that I posted about our daughter. Such similiar stories.

    PS I was in the marching band in school too! Played the clarinet. What instrument does your daughter play?

    Good luck with every thing!!!!

    Terrie
    I have a daughter with mild autism too! She's 11 years old. Ashleigh's biggest curve the 55 degrees is in the middle of her back. What is that area called. As soon as they put up the x rays we both went "wow, that's bad"

    yeah i never really noticed how crooked Ashleigh was either until after we saw our family doctor. then i noticed how her hip stuck out further and even her shoulders seem uneven to me.

    Ashleigh plays the baritone. For those who don't know (because i've met people who don't) a concert baritone looks like a small tuba. The marching baritone resembles a large trumpet. She plays both.

  6. #6
    Join Date
    Jan 2007
    Posts
    150

    Spine

    [QUOTE=madileigh;140024]Ashleigh's biggest curve the 55 degrees is in the middle of her back. What is that area called. QUOTE]

    Welcome Chris,

    Top to bottom
    Cervical is C1-C7
    Thoracic is T1-T12
    Lumbar is L1-L5
    Sacrum

    If the biggest curve is in the middle of her back then it is probably in the thoracic region.

    A Mom

  7. #7
    Join Date
    Jan 2008
    Location
    NC
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    8,080
    Me: By the way, if the 40* was correct, that is at the top of the bracing range and it would not be the standard of care to brace that curve to my knowledge. Bracing is not done at 40* and above for a reason... it will be ineffective and tortuous for no reason. It's not ethical.

    Madileigh: ok. I was just basing the bracing on what we read on the internet that they brace from 20-40. Then starting at 50 surgery is recommended. Either way no bracing.

    Me: Yeah I think 40* - 50* is a no man's land for some reason. The standard for bracing ends 10* below the surgical trigger angle. I am not sure how to interpret that other than the chance of braces working in that range in known to be very low and certainly can't be justified given how hard brace wear is.



    Me: Make sure you have a surgeon who does a lot of scoliosis cases and not just a general orthopedic surgeon.

    Madileigh: Yes. He's a pediatric orthopedic surgeon. he told us he performs around 100 of these surgeries per year. That sounded like a good number to me. Is it?

    Me: Yes that's a large number.
    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. #8
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
    Posts
    128
    Hi Chris

    Welcome to the forum. I was diagnosed at 12 yrs old and sort of just took it in my stride, I hope your daughter isn't too scared about what's she's facing. She may want to join the forum so she can talk to others her age who have just been diagnosed.
    Don't feel too hard on yourself for not noticing her curves most people don't, my mum didn't either. Why would you when you see her every day and at least now you know and can deal with it as a family.

    I don't no about bracing because my curves were too bad when I was diagnosed but I'd try not to worry about your daughter being a dyabetic. I'm now facing further scoliosis surgery and now have a blood disorder, my surgeons wont touch me until they have clear blood tests. They said they will carry them out the day before surgery then throughout the operation and regularly after. I don't think it will hurt to remind everyone that comes into the room though :-) so I would suggest the same to you or a sign.

    WOW 6th July is so quick. That's the rubbish thing about living in the UK. One of my curves is now 104 degrees and I've been on a waiting list for surgery for 17 mths. Its great that your daughter can choose to wait a while, if she's not in pain and wants to enjoy band club was it, then I don't think it will hurt as long as she's being monitored.

    Good Luck with everything

    Jenna
    27 yr old Female.
    Scoliosis since 12yrs, fusion to lower curve in 1998, costioplast 2001 and further corrective surgery 26 July 2012.
    Now the proud owner of a very straight spine. T1- L5 fusion.
    Mr Dunsmuir, Orthopaedic Surgeon, LGI Leeds.

  9. #9
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    189
    Welcome to the forum, Chris. You can't beat yourself up for not knowing, it does nothing positive. We were in the same boat, hadn't seen our son without a shirt & had to fight to keep it in when we saw his back when diagnosed, then the fast progression from there. I understand about wanting to plan around marching - our Jacob lives & breathes music, has been looking forward to entering HS this August for marching band all this time. Surg was Jan, not only bc of bad pain, but bc band camp would be 6 mos from then. Building up marching time w snare, hopefully next year quad drums. Can Ashleigh hold off til Nov or so, when it's over? I think you'd said she wasn't in pain. One other thing to think about - pt won't help her curves, but might be worth talking to her dr if you're putting off surgery to keep her as strong as can be. Just a thought. Good luck w everything.
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

  10. #10
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    Jun 2012
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    15
    yes we're planning on holding off until marching band is over. Actually we were thinking more like January or February. Because they have their winter band concert at the end of December and she doesn't want to miss that. She lives and breathes band LOL! it is her favorite subject in school. She has not complained about any pain or difficulties with her back. When we saw the ortho in May he was fine with waiting until the winter months. The july appointment is for us to go over any questions we have regarding the surgery, and kind of make the decision whether we want to proceed or not.

    Chris mom to 4 daughters. 13 year old with Scoliosis and Type 1 diabetes.

  11. #11
    Join Date
    Oct 2012
    Posts
    39
    We are in a similar situation, where my son was first diagnosed with a big curve that would require surgery and we had no clue because we had not seen him without a shirt and since boys clothing tends to be more baggy I guess we just didn't notice. We are also waiting until the winter months so he can finish his sports season and the docs seem to think waiting until then would be ok. I think the waiting is the hard part, and would almost rather just get it over with. It is another story for my son, he is so sad about not being able to participate in his sport again(he is a wrestler) after the surgery that all he wants is to have one last season.

  12. #12
    Join Date
    Apr 2012
    Posts
    153
    Don't worry! The doctors have operated on diabetic kids before hundreds of times! Then r trained for this! During my surgery the nurse called my mom like for every little thing my surgeon did. She called When my surgeon made the Insision when he started drilling me when he put the rods, etc. When he was don he came to my parents and told them everything was ok and amazing
    You can request for the nurses to do that whatever happens she will be fine!
    "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

    Surgery on August 3, 2012
    Fused from T4-L1
    Day before surgery curve was 60*
    Now I'm hardly 5*

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