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  • Hi-
    I just wanted to say hello - our son is treated at Boston Children's Hospital by Dr. Hresko and we have been very impressed with his "forward thinking" in regards to treating our son's scoliosis. I do know of another Mom who has a son in spinecor and she recently saw Dr. Hresko (for a 2nd opinion or consult?) and he was very pleased with her son's success recently with the spinecor. I do not take this to mean that he is an "advocate" of spinecor, but if I can touch base with this Mom I will ask her to post here to you their experience.
    This is my son's version of why he is thankful to Dr. Hresko:
    http://www.youtube.com/watch?v=UuEfsQLkZj4

    I wish you and Shae the best of luck!
    -Cara

    PS We also have Harvard Pilgrim Insurance, and we were very surprised that they did in fact cover 100% of our son's surgery - and I credit Dr. Hresko/Children's Hospital for fighting this for us.
    Cara, Mom to Nathan
    Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
    Boston Back Brace 8/07 – 12/07
    VBS 12/10/07 Boston Children's Hospital
    Dr. Hresko
    40 Degrees before VBS
    11 Degrees now!! (2012)

    Nathan's VBS Video

    www.vertebralstapling.com

    Comment


    • Thank you Cara

      I'm sorry to hear your son had to have surgery. That is my biggest fear. I'm sure it was yours as well. I can't imagine going through that. I'm having an awful hard time accepting that there's nothing I can do but wait and see what happens. This scoliosis really bites the big one.

      Thank you for all your info. We (my husband and I) actually were at Children's today so we stopped by and asked some questions to one of the spine nurses there. Again, not very helpful. One of the things we heard was "we use the Boston Brace - this is Boston - that's where the Boston brace came from". No, really. Is that all? You can't even research anything else? I'm sorry for ranting. I'm just really fed up with the Boston doctors. They won't give you the time of day. But when I call the Doctors (various ones) at Spinecor centers they are so very helpful. My husband is a Physical Therapist and he's furious.

      Any information, advice, comments or whatever else anyone wants to throw my way is welcome and I do appreciate it.

      Thanks,

      Theresa

      Comment


      • hi theresa,

        i don't post frequently here (but always read!). i also have harvard pilgrim ppo. we are in massachusetts but go to montreal for our appointments. i have successfully gotten 80% reimbursement of all of our clinic appts and x-rays. they paid the max for durable medical equipment ($2500 at the time). you should have more leeway for going out of network since you have a ppo (versus an hmo). if you would like a copy of the letters and the supportive journal papers that i included in my appeal, i would be happy to e-mail them to you off-board.

        my best,
        deshea

        oops -- edited because i didn't read all of the replies! hi cara! cara is referring to me and my son lucas regarding dr. hresko. he does like the spinecor (advocate? probably not since they decided not to continue to use it in boston). he recommended that we continue to go to montreal since they have the best results there. it makes sense since they are the inventors.

        i can't remember off the top of my head what i had to pay out at the first visit. i guess in my mind, i was willing since my son is still growing but with the spinecor you don't need to replace it every 6 mos - a year like a rigid boston brace. we still have the same brace that we got almost 2 years ago. much cheaper in the long run than a boston -- dme limits still apply even if you are in network! let me know if you would like any of those documents that i sent in to build your case.
        Last edited by desheah; 04-15-2008, 07:49 AM.
        mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
        spinal detethering due to a tight/fatty filum at 22 mos;
        tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
        serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
        now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
        and ruby (3 1/2 yrs old and a handful!)
        north of boston, ma

        Comment


        • Hi Deshea,

          Thank you so much for posting. Wow, you've really been going through this for a long time. I hope your son is doing well.

          I would greatly appreciate anything you could send me. My email is vartaniant@verizon.net. I am so frustrated dealing with this insurance company I'm an emotional wreck right now. All I do is cry because I know that after having her thoracic curve get 7° worse in 4 mos. she's probably getting worse every day. I know I have to get this done quickly.

          Do you like going to Montreal? Do you see Drs. Rivard and Coilliard? How long is the drive? The doctors in NY have Sunday appointments and we could take the Acela train which is 3 1/2 hrs. I've read good things about Drs. Pappas and Siq. and they were extremely helpful over the phone. I know they've been doing it a long time as well. Was there a specific reason why you didn't go there? Harvard Pilgrim still covers $2,500 for the bracing. The only thing is they told me they're not sure if they cover the Spinecor brace. I'm waiting for a call back from them. Was the process long and difficult dealing with appeals? Did you just go ahead and get the brace and deal with the insurance after?

          You've already been a great help and given me a little encouragement to get me through the rest of the day. I can't tell you how much I appreciate it.

          Thanks again for the info.

          Theresa (Shae's Mom)

          Comment


          • i will e-mail you the letters that we sent when i get home. i'm at work right now and don't have the first set of appeals that we did. harvard is pulling your leg about not paying for the spinecor since they paid for us to have it. i realize now that every time i put in a claim, i have dr. rivard write a letter describing what was done so that it is complete. actually, i write the letter and all he has to do is sign it. i'm tired of putting in 2 sets of claims if i don't have all my i's dotted they won't even look at it and just send it back rejected. it seems like they never have my previous one on hand. it's as if they don't even look back at lucas' history. my advice is just persevere with the insurance, and you will win. oh yeah, i had called hphc 2 times before going to montreal the first time. they kept saying that we didn't need pre-approval before going and just put in the claim when i got back. yeah, right. still had to fight, but i'm not bitter

            the reason that we go to montreal is because lucas is so young. at the time of his getting the brace, he was the smallest to be fitted (4 1/2 yrs old and on the small side). i felt most comfortable going to the inventors. previously for casting, we were going to erie pa shriners. they actually prescribe the spinecor. since montreal is closer, these orthos have the longest experience, and we have family in vermont to stay with, montreal won out. i had contacted dr. deutchman in nyc initially but decided against going to a chiro. plus, he was much more expensive!

            fyi -- Drs. Pappas and Siq are actually chiropractors. i'm not saying anything against that, but just so you know, they are not orthopaedists. this is very common in the us. for some reason the chiro community has embraced the spinecor but not the orthos. it's very fustrating.

            my best,
            deshea

            p.s. lucas is a wonderful kid. what is really nice about this brace is that he can be a normal active child without his scoliosis being the first thing that everyone notices.
            mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
            spinal detethering due to a tight/fatty filum at 22 mos;
            tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
            serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
            now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
            and ruby (3 1/2 yrs old and a handful!)
            north of boston, ma

            Comment


            • Hi Theresa

              We also chose to go to Montreal over the others closer to us. Dr D in NY was sooo expensive. Plus we wanted the experience of Dr Rivard and Dr Coillard. We are very pleased. We just went and delt with insurance later. After hearing the $ in NY, Montreal was a cake walk even if insurance was a problem which it was not. We also get 80% and our Durable Medical. We have Blue Cross and they have been excellent.

              The good thing about Dr Rivard is he will give his honest opinion as to how he thinks the Spinecor will work for your case. He is not in it all for $. He wants the brace to succeed. He will not just drag you along if he does not think your child is a good canidate.
              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

              Comment


              • Hi , we just got back from Montreal. Katie's curves measured 6T/3L.

                I haven't even begun to deal with the insurance hassle as I have been way too busy. Deshea, would you mind letting me see the letters you have used to get covereage?

                Christine, we have a form of Blue Cross (empire). I know even within blue cross the plans are all different, but I would LOVE to get some coverage. I might not be eligible in general since her pre braced curves were 19 degrees and I believe my insurance requires 20 degree curve to cover bracing (even if a Boston brace).

                Deshea/Christine, Even if I could get the xrays and clinic covered it would be helpful....but I don't even know where to start...the receipts we get from the hospital are hand written, in french, and abbreviated. I don't even know what they say so I'm not sure how the insurance company would. Are those little hand written receipts what you use in the packages you submit to them? Any tips?
                Thanks! Jill
                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


                • Hi Jill

                  Congrats on a wonderfull appt, It's party time.

                  My husband handled the insurances forms, I will pick his brain ASAP. I will say that it did not seem hard. And yes we did submit Dr Rivards hand written forms. I would be TRUELY DISSAPPOINTED in the insurance industry if they won't cover a 19 degree curve!!!! If that is the case I may have found a new soap box!!!
                  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

                  Comment


                  • Jill,

                    That is great news about Katie's curves!! You must be so excited!!

                    As for the insurance issues, I have Blue Cross PPO (government plan). I didn't get a pre approval, just went and did it and later submitted the paperwork. It took me ten months of constantly calling the insurance company, submitting and resubmitting the forms and appeals, but finally, about three weeks ago we recieved a check (YEAH!!). They did not cover the full price of the brace, but they did pay the $2500 durable medical equipment and the xrays and initial chiropractic visit. I'm happy with that.

                    The thing that you have to do is be very persistent with the insurance companies. If they have coverage for DME, then as I understand it, they have to pay for the brace. They just know that if they drag out the process, many people will get tired and stop trying to get reimbursed.
                    Emily's mom-11 1/2 years old
                    28 degree scoliosis 9/04
                    Chiari Malformation/SM decompressed 11/04
                    17-24 degrees 11/04-6/07
                    Wearing Spinecor Brace since June 07
                    3/31/10- 29 degrees oob
                    11/18/09 17 degrees in brace

                    Comment


                    • Hi Jill

                      I spoke to my husband and he said that he just submitted the forms and paperwork from Dr Rivard, no problem. But as Emilys mom said, be persistant!!
                      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

                      Comment


                      • Thank you Deshea. Maybe Montreal is a better answer. I will discuss it with my husband tonight. Thank you (in advance) for sending along your information to me. I will call HP tomorrow loaded with information for my case.

                        I'm glad Lucas is active. That's one of the main reasons I want Shae to be in Spinecor. She is very active in dance, gymnastics and will testing soon for her black belt in Tae Kwon Do. It would be very difficult for her to do any of that with a hard brace. I'd also be worried about the psychological aspects of a hard brace (teasing, clothing (she's very into clothes at 11).

                        I look forward to receiving your letters. I'm starting to feel better.

                        Theresa

                        Comment


                        • Theresa, Hello and Welcome. When I posted earlier I didn't have time so I didn't say "hi". We are in very similar circumstances to you other than the fact that my daughter is younger. We take her to Montreal for treatment also. As you can guess from my previous posts, I just wanted to get the ball moving so we didn't deal with insurance issues and were prepared to pay out of pocket if need be (although now I'm ready to try and get some of it back!)

                          Our concerns were similar to yours and I dreaded the restrictions of movement that a hard brace would cause. My daughter does all her dance, soccer, and other activities with the spinecor on because it is flexible so she doesn't have to allocate precious out of brace time to choosing what limited activities there would be time for. Like your daughter, Katie has smallish curves which makes her an "ideal" candidate for spinecor. Like you, we want to avoid spinal fusion surgery at all costs (incidentally, the surgery that Cara's son Nate, above, had was vertebral stapling surgery aka VBS. That surgery is more of a replacement for bracing...like an internal brace. It allows the spine to remain flexible and hopefully will keep the need for fusion surgery at bay. However even if fusion surgery is required down the line, the parents feel that all the years of brace free life are worth it. The surgery is much less draconian than fusion surgery and the recovery is much faster. So in this case, Nates surgery and his results are a good thing! They wouldn't do the surgery on my daughter yet since her out of brace curves are a still a little too small, but I do view it as a backup if her curves progress despite spinecor bracing. Just nice to know that although spinecor and vbs are considered experimental by many, that there are some options out there)
                          Good luck with your decision making!!!!

                          Christine and emaris, thanks! I know it falls within the margin of error for xrays, but I would have preferred that the curve didn't increase at all! Hopefully its an anomaly and will go down a degree or two the next appointment. If not, I'll be afraid that it represents a trend in the wrong direction! I'm going to worry myself old and haggard over this...I think I'm doing better with accepting what is going on and then the appointment comes and I'm nearly hyperventilating from nerves and my muscles are all so tight it almost feels like I'm having a heart attack or something. I can see this cycle repeating over and over again over the next 9 years or so!
                          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


                          • jill,

                            congrats on katie's appt! great numbers. don't have much time before dinner, but i don't think that i have your e-mail address. do you have mine to e-mail off-board? if not, i will send you a pm through nsf. i would be happy to send the info along . . .

                            thanks,
                            deshea
                            mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
                            spinal detethering due to a tight/fatty filum at 22 mos;
                            tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
                            serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
                            now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
                            and ruby (3 1/2 yrs old and a handful!)
                            north of boston, ma

                            Comment


                            • Jill

                              I also have had anxiety issues. For a while I would almost feel like I was having "anxiety attacks" my heart would race and the stress was overwhelming. It does get easier. If you look at my signature you will also see small fluctuations in my daughters numbers. I think that is to be expected.

                              I have looked at VBS as well, right now my daughters results from Spinecor are outstanding and there is no need for surgery. However if things start to change it may be an option for us, my daughter is still a good canidate.
                              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

                              Comment


                              • Originally posted by shaes mom
                                I'm sorry to hear your son had to have surgery. That is my biggest fear. I'm sure it was yours as well. I can't imagine going through that.
                                Theresa, I think you have VBS confused with fusion surgery. The two have virtually nothing in common. I think I can safely speak for Cara when I say that while she'd rather Nathan have required no surgery at all, VBS freed him from any kind of brace.

                                Not only that, Nate has continued to achieve correction - and is thriving.

                                Originally posted by shaes mom
                                We (my husband and I) actually were at Children's today so we stopped by and asked some questions to one of the spine nurses there. Again, not very helpful. One of the things we heard was "we use the Boston Brace - this is Boston - that's where the Boston brace came from".

                                No, really. Is that all? You can't even research anything else? I'm sorry for ranting. I'm just really fed up with the Boston doctors. They won't give you the time of day. But when I call the Doctors (various ones) at Spinecor centers they are so very helpful. My husband is a Physical Therapist and he's furious.

                                Any information, advice, comments or whatever else anyone wants to throw my way is welcome and I do appreciate it.
                                You invited comments, so here goes ...

                                In all my years (about 30 now) of dealing with scoliosis, I've never heard of a "spine nurse" ... nor can I imagine any competent medical professional pushing a brace simply because of its development locale. What exactly *is* a "spine nurse", Theresa, and why would you ask a nurse about your child's treatment?

                                The "doctors" that normally prescribe Spinecor are chiros, not orthos. Few orthos (SRS or otherwise), including mine, prescribe Spinecor because they aren't satisfied with the results. My surgeon *has* prescribed it in a few cases because the parents insisted (and he has a good orthotist here in town). Not ONE of those treatments were successful.

                                Maybe *that* gives you an idea why orthos don't give it much consideration.

                                Look through this thread (the last few months in particular) and see just how many kids have advanced from treatable (via VBS) curves to curves that "suddenly" jump to fusion degree levels because they're almost always x-rayed in-brace.

                                Orthos using ANY OTHER bracing system require a mandatory 24-48 hour UNbraced period for a reason ... to get a true and accurate Cobb. It takes that long for the body to relax to normal posture.

                                I'm not sure why your husband's profession is relevant, but perhaps you could explain?

                                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
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