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  • asdfghjkl;

    Pam,
    I totally agree with you. It feels like my parents don't care, which they totally should. The spine is like the most important part of the body, considering it holds you up. haha.

    I don't want to make excuses for them, but i'm scared to argue because i don't want to be accused of starting problems.

    I wish I knew what that *something* was. but i bet it won't happen.
    Maybe they do care, but i wish they would just help.

    I guess I could talk to a counselor, but if i drag one in, it would just start more problems at home.
    Although honestly, I wish i had someone i could just sit down and talk to that would understand, besides the people on this forum.

    I know we can afford it, since we have insurance, but i don't have anyone in my family that can help me. I live in mission viejo, CA and my mom's family lives on the east coast. my dad's mom is in leisure world and his brother is in marina del ray. and i know he wouldnt be able to help.

    spring break is in like 2 weeks, so maybe something will be done.
    ughhh this is sooo stupidd!

    HI
    Im 15
    im pretty outgoing
    JV Cheerleader-woot woot :]

    my curves are:
    in the 30s.
    somewhere in or around there.

    i have a spinecor brace.

    Comment


    • MATJESNIC (melissa)

      I always read your posts about Nicole and I'm so glad her surgery worked out. I hope she gets back to dancing soon.
      My orthopaedist/surgeon is dr. Aminian, who is supposed to be some famous doctor, idk why. But he sent me to this brace fitter in long beach who basically out the brace on me, put two bodysuits, extra crotch straps, and some pictures in a bag and sent me on my way.
      And the whole time my mom was telling me how grateful i better be because of the money she's spending on me, even though the insurance is covering it.

      you know it's not my fault i have scoliosis. if they didn't want this responsibility, then they shouldn't have had a kid. too bad im such a mess up.




      p.s. if nicole wants to friend me on myspace, it's myspace.com/no_regrets_4_allegra

      HI
      Im 15
      im pretty outgoing
      JV Cheerleader-woot woot :]

      my curves are:
      in the 30s.
      somewhere in or around there.

      i have a spinecor brace.

      Comment


      • Originally posted by Allegra
        My orthopaedist/surgeon is dr. Aminian, who is supposed to be some famous doctor, idk why. But he sent me to this brace fitter in long beach who basically out the brace on me, put two bodysuits, extra crotch straps, and some pictures in a bag and sent me on my way.
        And the whole time my mom was telling me how grateful i better be because of the money she's spending on me, even though the insurance is covering it.

        you know it's not my fault i have scoliosis. if they didn't want this responsibility, then they shouldn't have had a kid. too bad im such a mess up.
        Hi Allegra,

        You are NOT a mess up!! And of course it's not your fault that you have scoliosis. I'm so sorry you seem to be going through this alone at home. I really think you might want to consider talking to a counselor or another trusted adult - not to cause any trouble at home or anything, as you said you were afraid it would do - but just to have someone to listen and advise you and just be there for you.

        If I wasn't clear across the country I'd come give you a big hug!!

        You will see from my signature I have three children and my daughter is just a little older than you. I am often accused of being TOO concerned and driving my kids nuts making sure they take care of their health, go to the dentist, wear the right jacket, etc. It's not a burden for parents - it's what we are supposed to do - so please don't feel like you are asking too much or that you are a "mess up" just because you expect the proper treatment.

        Please always know you can come on here and talk to us. I know it's not the same as having someone there in person that you are close to but we'll do our best

        BIG HUGS,
        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/

        Comment


        • Allegra,

          I am really sorry you are going through this. I hope your Parents will get you to the right doctors because you need to have x-rays done so that the Spinecor is fitted on you correctly.

          I am sorry you are feeling like a burden. I'm sure your Parents don't see you in that way. When we have children, we know there will be lots of bumps in the road.

          Remember that you are not alone in this. We are all here for support. I agree with Maria that maybe you can talk more about this with a school counselor or some other adult you trust. You shouldn't have to feel this way.

          Thank you for caring about Nicole. It means a lot to us.
          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

          Comment


          • To Allegra

            If you live in Mission Viejo, there is an excellent caring doctor in Tustin, which is only about 20 minutes from you. His name is Dr. David Gorrie, he has been treating scoliosis for over 15 years. He is great with the Spinecor brace, trained by Andrew Mills (who makes the brace) himself. If you call him at (714) 544-9789 (his wife Ginny will answer the phone) I'm sure he will answer all your questions (or your parents). He can easily give you an x-ray, lesson on the brace, adjust it, etc. My daughter has fairly severe scoliosis, wore a Spinecor brace and has been treated by Dr. Gorrie for over 3 years. Good luck and kudos to you for pursuing what you need to take care of your health. Don't give up.

            Comment


            • my spine

              Maria,
              thanks for the across-the-country hugs. it means a lot.

              LATigner,
              We originally went to dr. gorrie when i was first considering the brace and i loved him so much. he was so nice and helpful, and it didnt feel like he was pushing us to get it at all. but then when we went to the surgeon, he recommended us to go to some place in long beach or something.
              but more then anything i wish i could go to him.

              HI
              Im 15
              im pretty outgoing
              JV Cheerleader-woot woot :]

              my curves are:
              in the 30s.
              somewhere in or around there.

              i have a spinecor brace.

              Comment


              • Spinecor

                Dear Allegra,
                I'm sorry you having all these problems with the brace, etc. suggest you e-mail the SpineCor Corporation and tell them your plight. If the doctor in Long Beach is an accredited distributor of the brace he has to follow the normal protocol which involved x-rays, putting your data on their specific computer program which distributors have to buy, getting a specific exercise program and follow-up appointments. A brace alone without all these is only worth hundreds vs 1000s of dollars. How much did it cost? I hope you weren't scammed. Please contact Dr.Couillard in Montreal who invented the brace and tell her all this stuff.
                Good luck
                Harriet
                P.S. I'm adapting very well to the brace. It's been 1 week and a half since I got it. The migraines have finally passed. I feel much straighter and have less beck and neck pain.Working at the computer doesn't hurt so much. I'm getting pretty fast at putting it on. If you put the bum straps etc on tightly it looks better under clothes.

                Comment


                • oh shoot!
                  i think the brace was like $5,000!
                  ughhh
                  thanks for telling me.
                  my parents whould be the ones on here finding out that they got scammed by the most retarded doctor ever who thinks i tell him what to do just because i ask a lot of questions!
                  kvsnejkrsvfdjksgjrskgjdfsfkg;nfjdskvnjrhgrekg;njfk s!
                  ok im good

                  i'm so glad you're doing better in the brace
                  it;s so much easier to wear at nightt
                  i totally had myself trained to sleep on my back

                  HI
                  Im 15
                  im pretty outgoing
                  JV Cheerleader-woot woot :]

                  my curves are:
                  in the 30s.
                  somewhere in or around there.

                  i have a spinecor brace.

                  Comment


                  • Hi Again Allegra,

                    You see Dr. Aminian, right? It sounds like you don't think too highly of him. I'm curious about what you do think of him.

                    I have heard his name because I believe he has also started to perform VBS (stapling) so his name has come up, but I have never spoken to any of his patients.

                    Do you mind telling me how you have found him to be (both as a doctor and as far as bedside manner) so far?

                    If you don't want to answer that's fine too, but I would value your opinion of him. And I just like to learn as much as I can about the different orthos.

                    thanks,
                    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/

                    Comment


                    • Spinecor

                      Dear Allegra,
                      The brace, x-rays, etc shouldn't cost you more than ~$3,100. After that follow-up appointments should be ~$120. I will have several appointments over the next year or two. Please contact The Spinecor Corporation.
                      How long do you have to wear the brace? What's the prognosis?

                      Comment


                      • Check up in Montreal tomorrow

                        We are going to Montreal tomorrow to see Dr. Rivard and Dr. Colliard again.

                        Esme and I are pretty nervous as usual - have had some real shocks in the past with these check-up appointments!! Esme hasn't worn the brace at all lately - it is hurting her left hip and pulling her right shoulder forward so much it hurts and makes her bend over. She has grown quite a bit and put on some weight.

                        We are hoping Dr. Rivard will agree to allow her to have an out of brace x-ray before they put her back in the brace so we know where we are at with this.

                        I don't think she looks like she needs surgery though so I am hoping and praying for the best tomorrow.

                        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).

                        Comment


                        • Visit to Montreal

                          Dear Ruth,
                          Good luck


                          Harriet

                          Comment


                          • Allegra, as the patient, you have EVERY right to contact Spinecor.

                            Dr. Aminian is not listed as "Spinecor Accredited". Who actually fit your brace?

                            You may email Spine Corporation at: info@spinecorporation.com

                            Specify you're a patient, and include your mailing address - including the country - along with your questions.

                            I'm sure others on here have more direct emails. If your parents won't handle this, you need to.

                            If I understand what you've written correctly, this doctor is overcharging for substandard treatment, non-adherance to protocol on prescription of the Spinecor brace, and is doing so without even *x-rays*. Regardless of whether the brace cost $5 or $5,000, without x-rays, how in the world could you have received a brace that ever fit properly ???

                            Allegra, these are serious issues you've raised, and he could be in SERIOUS trouble.

                            Honestly, I wouldn't be surprised if other list members don't check on this doctor and his affillliation with SpineCor.

                            I am also going to encourage you again to speak to your school counselor. From what you say, things are pretty bad at home *anyway*: It doesn't sound like talking to someone is going to make them worse, and it could very well help YOU.

                            Regards.
                            Pam
                            Fusion is NOT the end of the world.
                            AIDS Walk Houston 2008 5K @ 33 days post op!


                            41, dx'd JIS & Boston braced @ 10
                            Pre-op ±53°, Post-op < 20°
                            Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                            VIEW MY X-RAYS
                            EMAIL ME

                            Comment


                            • Ruth:

                              I have been thinking about you all this week and will be waiting to hear the results of Esme's appointment. Wishing you the best of luck.

                              Mary Ellen

                              Comment


                              • Good Luck Ruth! Let us know how it goes - my fingers are crossed for you. How long has she been out of brace?

                                Allegra, I know that different doctors charge different amounts - I think we paid close to $4000, but that included the charge for xrays. As the others point out, it would be impossible to fit you for the brace without Xrays. You said Dr. Aminian didn't take any...but did you bring recent Xrays with you from another place when you went to see him? Some orthos will use xrays that were already taken to fit you for the brace to try and minimize xray exposure - in those cases, the xrays have to have been taken shortly before the appointment, of course. They can't be outdated. I'm glad spring break is coming up - most doctors book out in advance though so if you don't have an appointment scheduled yet, you try to get one ASAP. I think Pam has good advice, it would be good to talk to a school counselor (or maybe even the school nurse? both?) - maybe they can act as your advocate and point out how important it is that your parents follow up.
                                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

                                Comment

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