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Thread: New Parent with Questions

  1. #1
    Join Date
    Oct 2007
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    Maryland
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    New Parent with Questions

    Hi! This is my first post. My daughter has scoliosis. Her pediatrician suspected it at a physical exam in July with a scoliometer curve of 8 to 10. She advised us to return in a few months to be checked. On September 18, the doctor thought the curve increased, ordered an X-ray and referred us to an orthopedic specialist within our network, Kaiser. At the time, I did not know to request a pediatric orthopedic specialist. The radiology report from the first x-ray showed T18, L17. She was seen by the specialist on October 15th. He ordered a second x-ray on the spot (because the first film was not sent over) which confirmed an S curve of T19, L17. He said they did not do anything with these numbers and we should return in 6 months to see if they reach high 20’s to consider bracing. Not wanting to panic in front of my daughter, we left. BTW, the radiology report on the second x-ray was T24, L22 (but a different vertebrae number was used. I guess that would increase the angle, right?)

    Once we got home and I started to research scoliosis. I now think that 6 months was far too long to wait when she is about to go into her puberty growth spurt. My DD is 12.5 years old. She has not started menstruation and family history indicates it could still be a few years off. Her Risser Sign appears to be at stage 0, Tanner Stage 2.

    Therefore, I requested a second opinion from the pediatrician. The request to Children’s Hospital in Washington was denied because they are not Kaiser doctors. We got an appointment with Kaiser pediatric orthopedic specialist which was an awful experience. I cannot take my child back to that doctor.

    So….do you think I should be concerned about seeing a specialist who deals with scoliosis? I do, but I am not sure I am making too much out of this. It seems to me that given my child’s age and stage in maturation, the progression can increase. If bracing were required, would she (and I) be supported in this? Has anyone on this forum dealt with scoliosis treatment within the Kaiser system? I am wondering if I should change health insurance companies now while I can during open season.

    Thank you for any insight and experience you have to share.

    P.S. We are originally from Canada, so dealing with the health care system is a little unnerving for us.

  2. #2
    Join Date
    Sep 2007
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    You should definitely stay on top of this and keep it monitored however you can. Our appointments, once diagnosed, were four months apart and it was amazing the amount of change in that short period of time. It was obvious that Elizabeth was growing taller but the changes in her curve were much harder to see. We attempted bracing but it is difficult for the child to tolerate even a mild mannered, easy going kid like Elizabeth had a terrible time wearing it.

    I don't know anything about the Kaiser Ins but there may be another specialist within the system that you could transfer to for another opinion that you would be more comfortable with.

    Best of Luck!

  3. #3
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    Sep 2007
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    You are very right to be concerned. I wish we had found my son's curves so early, and done our research earlier. He is the same age as your daughter, with greater curves.

    If you haven't already, check out the Spinecor thread on this forum. It has a lot of information about a flexible brace that seems to work best when the curves are small. A number of parents on this forum have their children in that brace.

    I'm afraid I don't know if Kaiser insurance would cover the brace, but it would definitely be worth finding out. We all benefit from each others' experience here, so I hope you will keep us posted on what you learn and do.

    P.S. We have also seen a discrepancy in Cobb angle measurement in different x-rays based on which vertebrae were used to measure.
    Last edited by WNCmom; 11-02-2007 at 11:38 AM.

  4. #4
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    I think you should definitely see an orthopaedic doctor - a scoliosis specialist.

    Also don't wait to take action - we did, based on the doctor's advice, and we are sorry now we did. The Spinecor brace seems to be a good choice for smaller curves. Wearing a brace is a challenge but the downside of not bracing is so undesirable. Also alternative treatments like yoga are claimed to be more effective on lower curves. Yoga is good to keep the spine flexible and improve posture.

    Has anyone checked your daughter's leg length? Has an MRI been done to check for a possible cause of the scoliosis?

    Ruth
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  5. #5
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    I also suggest you have an evaluation at Shriners. They are a GREAT facility and its free service. Getting more than one opinion is important to make sure you have all the information needed to give her the right care. A scoliometer is not an accurate measurement. You need to see a PEDIATRIC orthopedic surgeon who measures the xray using COBB angle measurements. There are many other variables too. Good luck and keep us posted.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  6. #6
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    I agree 100% with Carmell - since you are in Maryland I would go to the Shriners Hospital in Philadelphia. They are excellent! Their specialty is scoliosis. My son has been going there for nearly 4 years. Their toll-free number is 1-800-281-4050. You can ask for Janet Cerrone or Adrienne Pettine - they both work with the spine team there.

    Good luck!

    Maria

    p.s. Feel free to e-mail me as well if you like!
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  7. #7
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    Jul 2007
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    Atlanta
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    I was with Kaiser when I was diagonosed with scoliosis. I was the same age and stage in developement as your daughter. However, my curves were already pretty bad (40/39) when it was first noticed. Kaiser refered me to an orthopaedic surgeon who specialized in scoliosis. They did this right away, no in network referrals. As this was 14 years ago, perhaps they didn't have alot of specialists in network yet. Kaiser was good about covering the MRI and eventual surgery needed. Where they failed me when I developed a hematoma right after surgery. I went to my surgeon's office and they drew a sample and sent it to Kaiser's micro lab to see if I had an infection. Results came back negative. Soon afterwards it became apparent that there was an infection, the rest is in my signature below.
    I am NOT trying to scare you. This was my personal experience with Kaiser. Mistakes can happen, even though this one was a biggie . You can also do a search on this forum for Kaiser to see what others have had to say about them.
    Find a doctor who specializes in scoliosis and that you and your daughter feel comfortable with him/her. Maybe this means going to shriners or trying another specialist within Kaiser's network.
    GOOD LUCK!
    Audra
    Diagnosed at 12
    42T, 52L presurgery
    surgery in 1994: fused form T1-L2, curves corrected to 25T and 25L
    infection leading to surgery and 10 day hospital stay w/ strong antibiotics 3 weeks later

  8. #8
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    Oct 2007
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    Maryland
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    Here's an update:
    After many calls and requests, my DD's pediatrician arranged for her to be seen by an orthopedic specialist who works at Children's Hospital in Fairfax, VA and Washington, DC. I actually requested to see this doctor specifically because some other parents told me how pleased they have been with the care he has given their children. We saw him at the Fairfax centre last Wednesday. It was such a better experience and we feel he is much more capable of providing better care for my DD's scoliosis.

    The doctor said the original x-rays measurements were off a little. He measured them again as T-20 degrees, L-20 degrees, Risser 0. He said her scoliosis is idopathic. He would like to monitor my daughter and treat the scoliosis. He requested to see her again in 4 months (March 2008). He said she should be x-rayed at the Children's Fairfax Center in the future as they take more accurate and longer (full torso) x-rays than our initial x-rays. The doctor said if the curve(s) reaches 25, she will need a brace. He is a Kaiser associate doctor, so I think we will be able to remain with our insurance. I hope this is the right decision.

    I'm feeling a little better now. I guess a lot can change in four months, but it seems better than waiting 6 months as the other doctors suggested.

    I was speaking to my cousin (a radiology tech at Sick Kid's Hospital in Toronto) about initial tests. She wondered why we have not had an MRI taken. Is this customary? Should I ask about this?

    Thank you everyone for your support and insight. This forum has been so helpful.

  9. #9
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    An MRI is done to look for a cause of the scoliosis - like Chiari Malformation, tumours in the spinal column, etc. Our previous orthopaedic surgeon in Ottawa did not automatically order an MRI for Esme but when she complained of a tingling up her spine when she jumped he did. Knowing a bit more about scoliosis now I think an MRI should have been done automatically to rule out a cause.

    What type of brace did the doctor recommend if your daughter needs one?

    Ruth
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  10. #10
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    Aug 2007
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    I'm no expert but I believe they do MRIs for left thoracic curves (most thoracic curves are to the right). They are also more likely to do a MRI for younger children....I had been told when younger children get scoliosis (i.e. 9 or younger, which wouldn't apply in your case) there is more concern that there may be an underlying cause and that is when they do an MRI to try and determine if there is a chiari malformation, a neurofibroma, or a tethered spinal cord. [this is for asymptmatic children, if there were certain symptoms that could be associated with these conditions I'd imagine they'd order an MRI even with older children] Even with the younger children I'm hearing some conflicting information...one ordered an MRI, one said he doesn't bother with an MRI unless the curves hit 20-25 degrees, and another said the consensus is moving to not requiring an MRI unless it is a LEFT thoracic curve. I'm glad you found a doctor you are more comfortable with - 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

  11. #11
    Join Date
    Oct 2007
    Posts
    99
    Hi 2kids,

    Welcome to the forum. You will get so much support and information here to help guide you to your different options. The fact that your daughter is 12, has not sarted menstruating and has a risser of 0 is good.

    An MRI is used to rule out any intravertebral causes of scoliosis and can show some other abnormalities. I was told that an MRI is always done for left sided curves and children under 10. However at some point you may want one for your daughter just to know for sure that her scoliosis is idiopathic.

    If your daughters scoliosis requires treatment, there are many options you should consider. Traditional hard bracing is still, I think, the "norm" as far as what most ortho docs are prescribing. However, there are other alternatives.

    First, there is the spine cor brace. This brace uses tension to apply pressure to the curve. It is a very flexible brace that does not limit the child's activity or movement. There is a very lengthy thread on this forum about the spine cor brace that you should read through. Also, there are many parents here whose children are using the spine cor brace and they are all happy to share their experiences with you!!

    Second, there is a procedure called vertebral stapling. It is a surgical procedure where the convex side of the curve is actually stapled to prevent the spine from curving more. It can actually offer some correction. It acts as an internal brace. You can get wonderful insight on this procedure here as well.

    I know you are probably feeling overwhelmed and nervous about this for your daughter. This is a great place for you to be. Ask the questions... you will be surprised at the information and compassion people will share with you!!

    Hugs to you,
    Stephanie
    Mom to Michela ~age 12 ~VBS @ age 9 - 12/19/07 26* to 1*
    10/8/08 ~ curve is immeasurable!!
    07/16/09 ~ a few degrees overcorrected... being monitored
    12/28/09 ~ 14* overcorrected to the right
    2/23/10 ~ 12* overcorrected
    3/12/10 ~ Boston Brace at night to prevent further overcorrection. In brace corrects to -8*

  12. #12
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi 2kids,

    If you are interested in the procedure Stephanie mentioned, here's the link to the vertebral stapling support group. You'll gets tons of information and insight from dozens of parents:

    http://health.groups.yahoo.com/group/staplingsupport/

    Good luck!
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  13. #13
    Join Date
    Oct 2007
    Location
    Maryland
    Posts
    49
    Hi StephanieC,
    You mention that because my daughter is 12, has not started menstruating and has a risser of 0, this is good. Can you explain? I thought this was bad because it means she is still far from maturity and therefore risk of progression is high. Is that incorrect?

    Also, I recently learned that my sister has untreated scoliosis (but I do not know the size of her curves). I asked my sister to find out the size of the curve with an x-ray the next time she is at the doctor.

    Thanks everyone for the tip on the spine cor brace. I have read about it a little on this forum. I mentioned the spine cor brace to the specialist when we saw him last week. He said we need to wait to see if the curve reaches 25 degrees. Although I obviously want to stop the curve at 20 degrees, it is my understanding that we need to wait to see what the curve will do. It could stop or progress. We need to see the change from the original x-ray, right? Does the curve ever reduce with growth in height or will it always be 20 degrees or greater?

    Is everyone using the spine cor in Canada? Do you think they do not use it in the US? I'm sure the answer is no, but I thought I'd ask. The parents I have spoken with here in Maryland and Virginia all use a hard brace.

  14. #14
    Join Date
    Sep 2007
    Posts
    338
    2kids:

    I have to respond to your specialist's advice to wait and see if the curve progresses. If I had it to do again I would not wait, and I would not put my child in a hard brace--we did both on a surgeon's advice. The curve progressed in the hard brace. I've learned that most surgeons will not recommend SpineCor, because it is newer, and specialists have less experience with it. When I asked our specialist about it, he said he was not opposed to it, but that it was controversial. I'm in the U.S., by the way.

    Although my son (same age as your daugher, and also Risser 0) is new to SpineCor (5 weeks), there are folks on this forum who can tell you it is working for their children with smaller curves. Hard braces are designed to hold the curve only, not to reduce it, and it is debatable whether they do that, since the muscles around the spine atrophy when encased in plastic 20 hours per day. Your daughter's curve may progress (some seem to be unstoppable), stabilize, or grow straighter, but my understanding is that a curve can only get straighter if it is allowed space to grow straight, and a hard brace does not allow that.

    Also, my understanding is that being young and pre-menarchal is a double-edged sword: there is more time for the curve to increase before growth ends, but there is also more time to correct or stabilize the curve before the bones harden.

    Scoliosis is complex and mysterious, and there are a number of approaches to treating it--from what I can see most of us on this forum are using more than one approach. Unfortunately, many mainstream medical people will only offer waiting, bracing, and surgery. Many of us here have at some point been told what you've been told, and now we're looking for, and using, other options. In the end the decision is yours, but I think it would be worth it to at least look at what else is out there before making the decision to watch, wait, and hard brace.

    Mary Ellen

  15. #15
    Join Date
    Mar 2007
    Posts
    77
    My daughter is 12, wasn't menstruating, and had risser of 0 prior to her surgery on Aug 22. Her curves were 61T and 53L. The facts of her being risser 0, premenstrual... were not good in her case because of the chance that her curves would continue to rapidly progress (in about a year they went from mid 40's to 61,53), and would have continued to do so. She still had/has so much growing left. Your daughter's curves are still small (relatively speaking). I think that you definitely should be seen by a pediatric orthopedic doctor that specializes in scoliosis or the spine, and I think 6 months is a long time to wait - it seems that girls go through rapid growth spurts around that age - we saw very rapid changes even while wearing a brace (although, she was not wearing it as prescribed, but she was holding ok in the boston brace, it was when we went to a providence that her curves really took off - not sure if it was because of rapid growth, or, the fact that she didn't really wear this brace much at all - looking back now, I wish that as soon as we saw progression (and non compliance) there that we had been more aggressive and tried the spine cor). Whatever you do, try to keep her back flexible with exercise or whatever - that makes a difference if/when surgery would be needed. Sorry, can't help with Kaiser insurance - good luck with whatever road you take!!
    Last edited by emma12; 11-14-2007 at 06:02 PM.

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