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  • New w/??s plus Shriners Now or Later?

    DD 12 (13 in May) was diagnosed this week with scoliosis. Local xrays show a 30 degree thoracic curve, although the pediatrician still feels it may be greater. No other curves were noted, but I am still not sure if she has no others, or if this was just the significant one. We have an app't with a pediatric orthopaedist unconfirmed, but probably within 3 weeks. I don't really know anything good or bad about this doctor-he does have good credentials, though. The 2 parents I have talked to around here took their kids to Memphis for treatment. This is an option, too-we live in north MS. I know there is a Shriners Hospital in Shreveport, which is about 5 hours away from us. Of course, we only want the best care for her. I am wondering if we should go to see the doctor to whom we were referred, and go from there, or if we should try to get an appointment at Shriners right off the bat?? May we contact Shriners directly, or must the pediatrician refer us? Any advice/experience with this would be appreciated. I have been reading these boards for a couple of days, and the information is amazing. I already feel calmer just knowing a bit of what to expect. Thanks! Susie

  • #2
    Hi Susie,
    My daughter is 14 and was diagnosed about 2 years ago. We are looking at surgery at this point. We have tried the hard brace, Spinecor and various types of therapies, nothing helped because she was already above the threshhold for bracing.
    About Shriner's, although we aren't going there, I did talk to them. I think I printed an application off the internet. You don't need a referral, but if there are any xrays and medical records, they did request I send those along with the appl. I'm not sure how to advise you on who to see or where to go. If you have good insurance, you should be able to go to any good orthopedic surgeon who specializes in scoliosis. I would do as much research on the dr. as possible, although this may not always be possible. And you should definitely feel comfortable with him, because this is the beginning of a long relationship. We didn't like the doctor our pediatrician recommended and ended up not going back to him.
    The best advice I can tell you is really stay on top of this, don't miss appts or procastinate. The hard brace is pretty difficult for teens to adjust to, you might want to do some research on the spinecor brace, it's a lot more comfortable therefore compliance is not usually an issue and at 30 deg. she could probably still benefit from wearing it. I think most parents on the spincor thread would agree with me on this, if you decide on the Spinecor, go to Montreal for your initial fitting and consultation. You will know for sure it is done properly. Also do a lot of research on the internet so you'll be prepared every step of the way. I wish I had realized how progressive this could be, I honestly never thought we would be looking at surgery. My daughter was 12 when diagnosed and it progressed very rapidly from an initial 25 deg curve.

    Take care,
    Sherie
    Last edited by Sherie; 02-16-2007, 08:14 AM.

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    • #3
      Thank you so much, Sherie! I have been researching, researching, and now although I know what to expect, I am a little overwhelmed with all this information! I think what we have decided is to go ahead and apply at Shriners, but we will probably go ahead with the appointment with the doctor in Jackson. We are pretty sure we can see him soon (still waiting for confirmation of appointment.) Our insurance should be fine for all of this. Then we will still have the Shriners option if accepted.

      I wish you and your daughter much strength in your upcoming journey. Thanks again.

      Susie

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      • #4
        I just talked to Shriners-Shreveport, and they took my application over the phone. She said we would hear from them within about 2 weeks. I also got the confirmation from the ped ortho in Jackson, and our appointment is 3/20. Now I guess we wait.

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        • #5
          roscateri,
          I live in Arkansas.My daughter was diagnosed almost a year ago.She is 12yrs old.We have seen many different Drs.She was being treated in Little Rock.One of the scariest things for us was the DR question.Who should we see.We has our first appt at a Shriners (St Louis).I was blown away by the love,care knowledge and professionalism we recieved there.We too have wonderful insurance but it is still costly.Money was not the problem.I noticed peace of mind for your family is almost the most important thing.I didnt recieve that from anyone but Shriners.I would go to any appt I was given ,but continue to check in with Shriners. I got out appt immediately.
          You can ask anyone on this sitre (this is what I did) Not one Shriners patient or family member has one neg reply.I would travel as far as I had to to recieve treatment for my daughter at Shriners.They specialize in this and believe in keeping the family completely educated and informed which is very important.
          Good luck
          Mother of Nichole 12yrs old and Madison 4yrs old

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          • #6
            newly diagnosis

            Hi there, I am a parent of a new diagnosed scoliosis 11 year old daughter. She has a 49 degree thoracic curve and a 29 degree lumbar curve. this all happened in a matter of of 6 months. She actually is scheduled for surgery on the 26th of feb. but we are having second thoughts. we do like her surgeon and have been treated very well. i have done research etc. my ? is does the degree that my daughter has seem to be great enough for surgery? everything i have read says "yes" just need other parents opinions.

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            • #7
              alyssah,
              My daughter just turned 12 and has a 43 degree curve.We were told when we reached 50-55 degree curve,we would discuss surgery.They say the brace is uaeless after those degrees.I too am scared to death.It is such a young age.Please keep us informed and let us know how she is,as I have a feeling we will be following the same route here shortly.
              Mother of Nichole 12yrs old and Madison 4yrs old

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              • #8
                Hi Alyssah,
                I also hear 50 is when they talk surgery, of course, 49 is almost there. I was just wondering if the doctor has discussed wether she will grow anymore or not. I know kids are all different, but my daughter grew a lot from the time she was 11, she went through a big growth spurt around 12. One of the first questions they asked us is when she started her period, they usually say they'll grow a few more years after that. You might also consider getting at least one other opinion if you haven't already.

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                • #9
                  Her doctor says that she will grow from above and below her fusions, and also should gain some height after the surgery just by straightening the curve. He also says that most growth is from your long bones (legs). She is a very tall 11 year old as it is, and has probably grew atleast 4 inches since Aug of this year. She is worried about her appearance. I have heard that the younger they are the better they do in the recover process, I hope that is true. She has had her menses yet, so it is going to get alot worse obviously. Her MRI did rule out any other abnormalities, which is a blessing. Thank you all for your support and advice. It is a very scary time and double guessing everything doesn't help. We just are looking at surgery as it will probably won't be a choice as she is still growing at a fast rate and don't feel like the bace is going to help and don't want to put her through all that and then tell her it didn't work.

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                  • #10
                    Originally posted by Sherie
                    Hi Alyssah,
                    I also hear 50 is when they talk surgery, of course, 49 is almost there. I was just wondering if the doctor has discussed wether she will grow anymore or not. I know kids are all different, but my daughter grew a lot from the time she was 11, she went through a big growth spurt around 12. One of the first questions they asked us is when she started her period, they usually say they'll grow a few more years after that. You might also consider getting at least one other opinion if you haven't already.

                    Sherie,

                    Did your daughter end up having surgery???
                    AlyssaH

                    Comment


                    • #11
                      Hi Allysa,
                      We are looking for a surgeon now. We've taken her to 2 local doctors who had very different opinions, so I'm waiting for an appt. at Scottish Rite. I also sent her xrays to 3 prominent doctors in the hopes they will give me their opinions also. We're looking at this summer for surgery. Both doctors didn't feel there was a need to do it immediately even if she progressed a few more deg.

                      I understand about the bracing, we've been through all that and more and it's very frustrating and disappointing when you've done so much only to find out it's progressed. But for us, it was something we had to go through to make sure we've explored all our avenues before we decided on surgery. I'm really nervous about surgery but have come to accept it as our only option.

                      Your daughter is having surgery next Monday? I wish you and your daughter the best and please update us on her surgery when you're up to it.

                      Comment


                      • #12
                        Hello Sherie,

                        I didn't read all of your posts. Could you tell me about your daughter? We went to Scottish Rite and were told the Spinecor will not work. I live in Fort Worth. We are going ahead with Spinecor anyway. Carly is 14 and has a single cobb of 32 (last time she was x-rayed 1 month ago at SR). She is a Risser 3. We went to Houston to get her fitted by Tom Dibello. We are doing it differently as far as getting started. They measured her first, ordering it and then after we see Dr. Marco on the 1st, then he will say yes or no. We want it on as soon as possible. I really believe he will say yes. I don't think Mr. Dibello would have took the time to measure her and order it if he didn't think she was a good candidate. We used to live in Houston. Katy area. We have friends in Missouri City. Oh, she wore the hard brace for 9 months but it was just aweful experience. She has been out of it for 4 months now. I will pray that you find the best surgeon. I did hear that they are really good at Scottish Rite.

                        Comment


                        • #13
                          Hi,
                          We live in Missouri City. We tried the hard brace too, also was a bad experience and then the Spinecor last year for about 6 months, unfortunately it wasn't doing anything to stop the progression of her curve. I've learned recently from one of the surgeons we consulted with the reason why. He rarely recommends bracing for lumbar curves because they just don't respond well to it. He said there is no support system around the lumbar spine. With a thoracic curve, it's basically a closed system so the ribs help to push the spine into proper alignment with bracing.

                          At the time we started with the Spinecor (Dr. Smouse, chiropractor, he was the only one fitting it locally at that time), her lower curve was already 42 deg, upper about 30. At the 3 month checkup, it was still exactly the same in-brace. At that time we switched to Dr. Marco and Dr. Rigo studied the fitting carefuly and made some adjustments (I thought he did a very good job). One month later, she was out of her brace for one week for some reason and then we went in for xrays, her curve had shot up to 50 deg. I don't think this happened in one week, it had been progressing all that time. Three months later it was still going up so we just decided to stop.

                          If I were you, I would give it a try. I met a 16 yr old girl at Dr. Smouse's office who's curve was reduced from 30 to 15 in brace so there's hope.
                          Good luck and thanks for the well wishes.

                          Comment


                          • #14
                            Carly's Mom,

                            I always thought the Spinecor worked best on kids with a 0 risser. Please make sure her spine is still flexible and gets a decent enough reduction in-brace. At least 10 degrees would be good. If not, you may be wasting your money.

                            Any other Spinecor Parents know anything about this?

                            I hope you don't think I am being too forward. I just don't want you to waste any time or money.
                            Melissa
                            From Bucks County, Pa., USA

                            Mom to Matthew,19, Jessica, 17, and Nicole, 14
                            Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

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                            • #15
                              I did not read this until now. Before we left to go to Houston we were told that she was a Risser 0 by Scottish Rite on Jan. 12. When we got to the Orthotist in Houston, we were told she was a 3. That surprised us. Then after she got the brace on and we went to Dr. Marco's office for the x-ray, we were told she was almost almost a Risser 4. I asked if it would still work and they told me yes, and that she would not have to wear it very long.

                              Now she is complaining of her spine hurting while wearing it. The bodysuit was too small. They are ordering a bigger one. She is just wearing a t-shirt and panties until the bodysuits come in. I also ordered some off line to check out other brands.

                              Now I am worried that it was a waste of time and money. Why would they let us go ahead with it if she wasn't a good candidate? Dr. Marco is an Orthopedic surgeon and Mr. Gomez is the Orthotist who also works with Tom Dibello. Do you know of anyone else that goes to them or have been to them?

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