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Thread: We finally were seen by an Ortho

  1. #1
    Join Date
    Dec 2006
    Location
    Northeast WI
    Posts
    11

    Unhappy We finally were seen by an Ortho

    My 6-year old son was diagnosed by his pediatrician in December '06 with two curves, 21 and 14 degrees. We finally had our appointment at Shriners (Chicago) on February 21. They took another set of x-rays and came up with similar degrees (20 and 15). As of right now the doctor wants to take the wait and see approach. We have another appointment set up for August (6 months). I am happy about him not having to wear a brace but scared to death that it is going to change quickly. I do realize I am being crazy - the degrees did not change at all over two months, why would they increase exorbitantly over the next six months? I plan on watching his back but for me visually it goes back and forth on a day to day basis so I am obviously not a good judge. Maybe if I take a clear digital picture of him I can then take monthly pictures and try to compare. I just wish I knew if I was doing the right thing by waiting and watching and not taken action.
    Laura

    Mom to son Anthony (age 6) and daughter Addison (age 1)

    Anthony was diagnosed Dec 2006 with a 21 degree curve and a 14 degree curve. Currently waiting and watching under the direction of an Ortho. Next appointment is in August.

  2. #2
    Join Date
    Dec 2006
    Location
    Arkansas
    Posts
    45
    Lauralee76,
    My daughter was diagnosed w/ scoliosis recently.She is 12yrs old and her curve is at 43 degrees.She has been braced sinced Dec 06 . Right now we are just waiting and watching.We also go to Shriners (St Louis) Our next appt is also in August.We were told we are "buying time"by bracing since my daughter is so petite and underdeveloped she has alot of growing left,So all we are doing at this point is trying to put of surgery as much as possible by having the brace keep the spine under 50 degrees.So that she can do as much growing as possible prior to surgery.Its very scary as a parent we want them fixed now!!Unfortunately it cant.You son as well as alot of growing I have been told by numerous Drs,they dont brace until the curve passes 30 degrees to 50 degrees as it is uneffective outside that range.
    Sincerely consider your son blessed, at this point there is hope he will not go passed 30 degrees and nothing will have to be done.My hope is gone.Well it was never there.My daughter was tested in school and it snow balled from there in dec of 06 her curve was read at 35 Feb is was read at 43.You are in good hands at Shriners.Honestly though if it would be of help to set your fears aside I highly reccomend 2nd opinion.I had 3 opinions myself Shriners absolutely leaving my mind at ease with the most confidence that my daughter will recieve the best treatment.
    Please keep us posted I know 6yrs old is just a baby and its hard.But from my experience its much harder on us parents then our kids!!Best of luck with everything

  3. #3
    Join Date
    Jan 2006
    Location
    Austin, Texas
    Posts
    112
    Hi Laura,

    I know its hard to just sit back and watch and wait. But with 2 curves 21 & 14 that's all you can do. But 6 months does seem like an awful long time in between appointments.

    Lorena's largest curve progession was during her growth spurt in the fall of 2005, 3 inches in 4 months at which time she was not braced it was during our watch and wait period. Our initial appointment was in August 05 (26*) our 2nd after her MRI was in September 05 and the x-rays showed a reduced curve(21*) and then in December 05 her curve had jumped up to 42*. I suggest you keep a close eye if you notice that he is growing call your dr and try to get in a bit sooner. I did notice Lorena growing because whe was outgrowing her pants very quickly.

    One thing I have come to realize is that these kiddos are so very flexible that one day all looks great and the next day not so great.

    My daughter is now 6 and I/we go through the same thing. I have her stand in front of me with both arms at her side and everything looks great, her shoulder blades are perfect her shoulders and ribs look nice an even. Then the very next day it looks like she's tilting to one side and her shoulders are way off center and her shoulder blades are completely crooked. I've discussed this with her physicians and they have all told me the same thing. She has a very flexible spine and depending on what she's doing or what she'd been doing things may have shifted and as long as she's flexible it's going to keep doing the same thing. What is important are her x-rays and trying to measure a scoliosis curve through pure visual is impossible but it is a good way to drive us crazy !

    At Lorena's last visit with Dr. Betz I was horrified because by looking at her she was really really crooked but her x-rays showed ZERO change. Dr Betz said all looked good curve was the exact same as the day of her surgery ~ I still look at her back regulary and do my best to not worry ~

    Also if your son has no other medical conditions have you considered vertebral staping? Since you already go to Shriners it may be a good idea to have Dr. Betz or Dr. D'Andrea see him, they are wonderful and the pioneers in vertebral stapling. Lorena had the stapling done in June 06.

    Hope this helps ease your mind a little bit

    Amanda
    Last edited by amandap; 03-06-2007 at 11:16 AM.
    Amanda

    Mom to Lorena 7 yrs old
    Diagnosed 8/2005 ~ 26 Degree Curve
    Progressed to 42 Degrees by Dec 05
    Milwakee Brace 1/16/06 - 6/26/06
    Vertebral Stapling on 6/26/06 @ Shriners in Philadelphia
    26 Degree Post Op Curve
    Last X-Rays December 07 ~ 26 Degree Curve
    Email: domingo_amandapompa@msn.com
    Website: www.vertebralstapling.com
    YouTube Video: http://www.youtube.com/watch?v=n6GmX3K7FIs


  4. #4
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Laura,

    Ditto everything that Amanda said - you can certainly keep an eye on your son's back but don't expect it to always look exactly the same....it never does. Of course, if you were to see a dramatic change, that's another story.

    I agree with mylittleangel that you are in excellent hands at Shriners.

    Six months, while within reason, does seem a bit long between appointments - but I am guessing it is because the curve is relatively small. If it is going to make you feel better, try moving the appointment up a month or two. It certainly can't hurt.

    In the meantime, know that we are all here for you. Please try not to worry youself to death or expect the worst (MUCH easier said than done, I know) - but I have learned that since none of us know what the future holds, it is best to at least TRY to live (and enjoy) one day at a time.

    take care,
    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/

  5. #5
    Join Date
    Jan 2007
    Location
    nova scotia
    Posts
    9

    feeling the same....

    Hi Laura. I'm feeling the exact same as you are. My 7-year old was diagnosed about 6 weeks ago, and it's driving me nuts. We too are "waiting and watching" because her curves are "mild". She goes for her MRI on Monday, and it's very stressful. I find myself trying to "peak" at her back without her noticing! I see changes everyday too and sometimes wonder how much I'm imagining! Anyway, wanted to share....glad someone else is feeling the same way!

  6. #6
    Join Date
    Jan 2006
    Location
    Southern California
    Posts
    59

    Young children with small curves

    Have you checked out the Spinecor thread on this forum? Many people are having amazing results with younger children and smaller curves. That way you don't have to just wait 6 months and hope the curves didn't get bigger - the Spinecor will reduce the curves that are already there. The watch and wait approach seems to be suggested by most doctors but a lot of times it ends up that the curves get a lot bigger and then you're trying to play catch-up with a hard brace and/or eventually surgery. It might be worth your time to research the Spinecor. There is one Shriners hospital that prescribes it as well as numerous other locations indicated on their website.

    My daughter is older (16) and has the Spinecor brace. Because it is completely flexible and hidden, it is very easy for kids to wear. We have a wonderful doctor here in So.Ca. that trained with Andrew Mills. I know if we had been able to have her in a Spinecor where her scoliosis was first diagnosed (age 12), I'm sure we would have had much better results than trying a hard brace first.

  7. #7
    Join Date
    Mar 2004
    Posts
    1,140
    Hi Laura,

    I've pasted an article below entitled "Progression Risk of Idiopathic Juvenile Scoliosis during Pubertal Growth", which shows that progression risk is 75% for children with juvenile curves in the 20 - 30 degree range just before the adolescent growth spurt hits - all these children will eventually progress to surgical levels despite conventional bracing. I've also read that double curves always progress. If it were me, I would not take a wait and see approach and would try to correct the curve before the adolescent growth spurt.

    The Shriner's in Erie prescribes the Spinecor brace and all care at Shriner's Hospitals is free. If you need help with transportation, there are organizations that can get you there for free as well. I also highly recommend dr. Rivard and dr. Coillard.


    http://www.scoliosis-support.org/mod...cid=4&start=20









    ******
    Last edited by Celia; 03-08-2007 at 01:40 PM.

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  8. #8
    Join Date
    Sep 2005
    Posts
    195
    Laura,

    I too have been feeling the same way for the past two and a half years. My
    daughter (5 at the time, now 8) was diagnosed with scoli, chiari malformation, and Syrinx in Oct. 04. She had brain decompression which corrected the chiari and has greatly decreased her syrinx. Her scoliosis reduced slightly and is now at 23 degrees. Each time I go to the ortho the curve has changed. Over the last two years post op it has ranged from 17-25 degrees. Often I drive myself crazy looking at her wondering if her curve is going to get worse, is there something more I could/should do, etc. I have seen two orthos and both have told me just to wait and watch. It is just so hard.

    Celia, the spinec ore brace sounds very interesting and I'm definetly going to research it.

    Caitlyn's mom, Good luck on the MRI those are very stressful to go through. I often feel it is easier for my daughter to go through it than it is for me.

  9. #9
    Join Date
    Aug 2006
    Posts
    369
    catlyn

    My daughter is 6 and we just went thru the MRI thing. I was very stressed about the whole thing but it turned out just fine her MRI was normal. Dr Rivard said it would be. He even said that he does not do MRI's on right curves only left. But we decided to do it anyway just for piece of mind.

    I find myself constanly look at her back. The poor thing automatically does the scoli stance after showers now because she know I want to see.

    You are not alone.

    I have to tell you all that the more I read about Dr. Rivard the more impressed I am. He is doing some great research and I think that spinecor is going to play a major role in treating young curves here in the states in the near future. I can not be more happy with our results. In my opinion waiting and watching is not necessary when there is a brace like this. Curves can progress very quickly, once they get beyond a certain point this very "user friendly" brace is not as effective.

    Christine
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  10. #10
    Join Date
    Dec 2006
    Location
    Northeast WI
    Posts
    11
    Thank you everyone for your responses. I am so confused I wish I knew what the right thing to do was. I want to believe that the Dr Ackman knows best, but I did not get the best feeling from him. I know Shriners is supposed to be tops, but this particular doctor did not seem to be very "caring". He did not offer up any information, I had to ask all the questions. And when he answered, I felt as though he thought scoliosis was such a minimal thing. But I do know that I read into things WAY too much, so that could be part of it. I also know that scoliosis is the least serious thing they treat, but it is currently the MOST serious thing for MY son. According to the Shriners website, scoliosis was not listed under his "Research interests and Specialties". But I am probably reading way too much into that too. My head it just swimming.

    Mylittleangel - I do considered my son blessed as he ONLY has scoliosis. I do fear that there is not that much hope that it won't progress - he has juvenile Scoliosis, a double curve (one of which is over 20 degrees), and a LOT of growing left. Everything that I have read leads me to believe it will progress. I know what you mean about it being harder on us. I tried explaining what was going on to Anthony in easy terms, but I doubt he has even thought about it once since then while I think about it daily.

    Amanda - I do not know much about vertebral stapling. Is this something that might be considered even though bracing has not yet been recommended? Also, would he still be able to play contact sports (football)?

    mariaf - I think I will try to move up the appointment. I just don't think I can stay sane waiting until August. Maybe I will try for a late June appointment.

    caitlyn'smom - What are the degrees of Caitlyn's curves? I hope her MRI goes good. I asked the Doctor about having an MRI but he kind of gave me a look and said that they are not needed in cases like this - where nothing else is wrong I guess.

    LATiger - I have read the entire SpineCor thread and now keep up with it and any other SpineCor threads. I am very interested in this brace, and if the ortho would have said that he needs a brace, I would have asked for the SpineCor. We are willing to go to the Erie Shriners to get it if needed. I would go to Montreal, but it is not something we can afford.

    Celia - Thank you for all the information. Do you know if Shriners would pay for transportation to the Erie Shriners when we are all ready being seen at the Chicago Shriners? Also, do you know how they help out with transportation? We live in WI so flying would be preferred - do they ever pay for airplane tickets?
    Laura

    Mom to son Anthony (age 6) and daughter Addison (age 1)

    Anthony was diagnosed Dec 2006 with a 21 degree curve and a 14 degree curve. Currently waiting and watching under the direction of an Ortho. Next appointment is in August.

  11. #11
    Join Date
    Mar 2004
    Posts
    1,140
    Hey Laura,

    If you haven't already done so contact your local Shriner's Temple and indicate your intentions to go to Erie Shriners and they will help you with transportation and accommodation costs. When you phone Shriner's, you should ask to speak to the care coordinator for Dr. Sanders and indicate to them that you are interested in the Spinecor brace for your son.

    There are various organizations which also provide free transportation to clinic appointments for one parent and child.

    Angel Flight America
    http://www.angelflightamerica.org

    Any Baby Can
    http://www.abcaus.org

    Miracle Flights for Kids
    http://www.miracleflights.org

    Northwest Airlines
    http://www.nwa.com/corpinfo/aircare.../kidcares.shtml

    PatientTravel.org Wings for Children
    http://www.wingsforchildren.org/pilot.htm



    *******

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  12. #12
    Join Date
    Sep 2005
    Posts
    195
    Cristine2,

    I hate to disagree with a doctor, but my daughter has a single thoracic right curve, and she NEEDED the MRI. Her Chiari and Syrinx were extensive. Without the decompression it wasn't a matter of if she would begin to have neurological isses, but when. I also look at Emily's back constantly. I try to do it so she won't notice that I am doing it, and when she sees me, I pretend I'm looking at something else. I don't want her to become worried or self concious of it, but somehow I feel like by doing this I will somehow be able to predict what will happen.

    lauralee, insist on the MRI!! My daughter had NO neurological involvement
    prior to diagnosis. Nothing else was wrong before the diagnosis, thankfully today there are still no symptoms of the syrinx. The only symptom my daughter has ever had IS the scoliosis.

    Celia, I read the Spinecore web page last night. It says that it is indicated for idiopathic scoliosis. Do you know if it is also used in cases of scoliosis due to chiari? Also, I live in Miami, there weren't any doctors on the website located anywhere in Florida. Any suggestions? Would I need to travel to Atlanta?

  13. #13
    Join Date
    Aug 2006
    Posts
    369
    Emariesmom

    Well that is interesting. My daughter also has a single right curve. I am glad I did the MRI. and even happier it was normal.

    In my house we talk about scoliosis all the time. For my daughter I think it will make her more comfortable and confident that she does not need to hide the fact that she is wearing a brace. She even got up infront of her 1st grade class (she initiated it) and explained scoliosis and showed off her x rays. I hope I am handling it properly only time will tell!!

    Christine
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  14. #14
    Join Date
    Mar 2004
    Posts
    1,140
    Quote Originally Posted by emarismom
    I read the Spinecore web page last night. It says that it is indicated for idiopathic scoliosis. Do you know if it is also used in cases of scoliosis due to chiari? Also, I live in Miami, there weren't any doctors on the website located anywhere in Florida. Any suggestions? Would I need to travel to Atlanta?
    I'll ask Dr. Rivard when I see him next week for our followup appointment. Are you planning to see a chiropractor? If so, steer clear of vestibular testing/rehab, warranties etc. etc. etc.... How close is Texas to Florida??? Dr. Gomez works as an orthotist in Texas and I've heard good things about him. I think GeorgiaMom is seeing Dr. Brian Ouellette and having good success HOWEVER..... he's recommending some pretty weird stuff such as weaning from the brace after six months when the minimum amount of time in the brace should be two years and her daughter is right in the middle of the adolescent growth spurt!!!!!!! He's then planning to do manual adjustments, i.e., back cracking. How crazy is that??????!!


    *******
    Last edited by Celia; 03-09-2007 at 07:36 AM.

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  15. #15
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Emariesmom - I agree with you that an MRI should be done on a young child with scoliosis regardless of whether the curve is left or right. Often the MRI will turn out normal, but many times it will reveal an underlying condition. Just FYI, one member of the spine team at Shriners Philadelphia (Dr. Samdani) is also a neurosurgeon. In addition to being a talented surgeon, he is an extremely caring and compassionate man.

    Lauralee - I agree with Amanda that you might want to look into the vertebral stapling, particularly since bracing - if prescribed - would be for several years. It may very well be that at 21 degrees the doctors in Philadelphia would not recommend the stapling at this time, but there is no way to know except to go there for an evaluation.

    What I can tell you is that while all Shriners Hospitals offer excellent care, the one in Philadelphia, under the leadership of Dr. Betz, is the best of the best. My son has been a patient there for over three years. Every doctor we have seen has been wonderful and caring.

    If you would like to e-mail me, my address is mariaf305@yahoo.com.

    take care,
    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/

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