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14month old with congentile scoliosis

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  • #46
    greggo72,

    Just wondering, did you try and call Shriner's to see Dr. Betz or Dr. D'Andrea? They might be able to push you up if you explain the situation. The care there is free, and those two are considered to be exceptional doctors. They are doing some really remarkable cutting edge stuff, so it's definitely worth having her seen there.

    Also, you mentioned someone at HSS in New York? Was it by chance Dr. Boachie-Adjei? He is our surgeon. Our daughter is scheduled for surgery with him March 9th. He's supposed to be one of the best in the world.

    My heart goes out to you guys! Best of luck to you.

    Susanna
    Last edited by susannajon; 02-15-2005, 03:29 PM.
    Susanna
    ~~~~~~
    Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

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    • #47
      yeah we wanted to go see dr boachie but he doesn't accept our insurance and from what i understand from talking to other forum members he doesn't accept any insurance, we don't have the funds to see someone out of our insurance.. we wanted to take ariana to see someone at Shriners but we were just notified that ariana's condition had been changed to needing surgery now, she is scheduled for surgery on March 7th 2005.. what type of surgery i don't know yet. I have an appointment for thursday feb 16th, with Dr. Errico (chief spinal surgery NYU), He must have seen something in her latest x-rays that our current pediatric spinal surgeon Dr Van Bosse didn't see because he told us to expect surgery end of April early May, her wire in her spine is broken so they are either going to do a anterior-post spinal fusion with an hemi verterbrae exision (spelled incorrect) or a post spinal fusion with rods and screws.. It will be her second surgery before her 2nd birthday, so I am kinda upset about the whole situation. we wanted to get as many opinions as possible because everyone we see has a different opinion on what would be the best for her.. we have so far have seen 3 different ortho spinal doctors and got three different opinions.. but we are now out of time so we will hopefully do what is best for ariana and just take leap and do the surgery.. Cindy and gregg It;'s obviously something we are not 100% comfortable with
      gregg and cindy parents of gregory, a 3 and a half year old and ariana 20 months diagnosed with congenital kyphosis at four months old-posterior fusion surgery at 13 months (failed) scheduled for anterior posterior hemivertebrae excision surgery at NYU March 28, 2005.

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      • #48
        Hi,

        I would call Dr. Boachie, and see if he will see her considering your situation. He is a very compassionate man and he might give you guys a look no matter what the financial situation... Just call and see (212) 606-1948 or (877) 606-1555. Fight for your kid... it's worth the effort. Same with Shriners. Please call them and explain the urgency of your situatuation. Don't accept what your doctor is saying. They will pressure you to cave and just let them do what thay want. I've been there. It's never as desperate as they want you to believe. Get all the opinions you can and make the decision that's best for your daughter! I encourage you to fight for what's right for her.

        Susanna
        Susanna
        ~~~~~~
        Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

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        • #49
          Today we saw Dr. Errico and we have decided to go ahead with him doing anterior post spinal fusion with them taking out the abnormal area of vertebrae. Dr Van Bosse our pediatric spinal surgeon will also be there as well. He also told us that they will be working with a thorasic (thoracic) surgeon, a Dr Nadler. We made a decision that we are reasonable comfortable with after speaking to the doctors. The surgery was scheduled for March 7th but they have changed it to March 28th, so they can better plan the procedures and also get a cat scan... The only bad thing is that once we got home from NYU medical center and we finished making all of the plans for the surgery we get a message on our answering machine that Dr. Betz (spelling??)at Shriners wants to see us on March 25th... 3 days before Ari's scheduled surgery.. now we are second guessing ourselves wondering if we made the right decision!!! So any advice? Should we continue with our surgical plans and still see Dr. Betz or not bother to see Dr Betz because we are resonable comfortable with the arrangment at NYU???
          gregg and cindy parents of gregory, a 3 and a half year old and ariana 20 months diagnosed with congenital kyphosis at four months old-posterior fusion surgery at 13 months (failed) scheduled for anterior posterior hemivertebrae excision surgery at NYU March 28, 2005.

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          • #50
            I'm a little worried reading your only "reasonable comfortable with the arrangement at NYU". I'd be hoping you'd be 100 percent comfortable with the arrangement, with Ariana being so young and the surgery so big

            Alison

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            • #51
              I'm a little worried reading your only "reasonable comfortable with the arrangement at NYU". I'd be hoping you'd be 100 percent comfortable with the arrangement, with Ariana being so young and the surgery so big

              Alison

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              • #52
                To be honest Alison we can't find any 2 doctors to agree on what type of procedure my daughter needs. Our insurance has become another issue and we are starting to get depressed about not being able to see the top doctors in scoliosis surgery because we don't have the $$$$!!!! so what do we do? We have to make a decision.. I mean how can we not have 2 doctors agree on what procedure my daughter needs? Dosen't that sound completly crazy? Even in his own practice the doctors don't agree. I think it's time to bite the bullet and make a decison since they are worried about being force to do an emergency procedure if her continues to progress at the rate that it has been progressing..
                Cindy and Gregg
                gregg and cindy parents of gregory, a 3 and a half year old and ariana 20 months diagnosed with congenital kyphosis at four months old-posterior fusion surgery at 13 months (failed) scheduled for anterior posterior hemivertebrae excision surgery at NYU March 28, 2005.

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                • #53
                  Is there any way you could call Dr. Betz and see if he could see Ariana really soon? It sounds like it really is getting urgent, but I'm also thinking that Shriners would be free right through until Ariana is grown up, if there was any way she could get in. We are all thinking of you and praying things will go well. Take care. ~Laura
                  30y/o
                  Upper curve around 55
                  Lower curve around 35

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                  • #54
                    p.s. I am sure they are good guys at NYU medical center. Let us know what happens.
                    30y/o
                    Upper curve around 55
                    Lower curve around 35

                    Comment


                    • #55
                      Cindy and Gregg,

                      Please consider waiting and seeing Dr. Betz. He and Dr. D'Andrea at Shriners are two of the very finest in the world, and considering your financial situation, Shriners gives you the double benefit of world class free care. Betz is in the cutting edge as far as advancements in scoliosis procedures. I would hate to see you guys ever have any doubt in your mind that you gave your daughter the very best possible chance. Please let them take a look at her. I would ask Errico to push back your date a week or two, so you can see Betz, and the two of you can thoroughly digest whatever he suggests as far as surgery. Don't let the doctors rush you. I would also try calling Betz back, and see if there's any way he can see you sooner considering the scheduled surgery date. My whole family sends our love and support!

                      P.S. Don't let the bad feedback on Shriners in Louisiana scare you. Dr. Betz and the Shriner's in Philly is a whole different caliber of doctor and hospital.

                      Susanna
                      Last edited by susannajon; 02-18-2005, 08:12 AM.
                      Susanna
                      ~~~~~~
                      Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

                      Comment


                      • #56
                        Gregg,

                        I understand completely how you feel! My daughter was seen by five different doctors (three of which were in the same hospital) and it was our fifth doctor that we had do her surgery. Several of the doctors agreed on what needed to be done but one doctor in particular wasn't even wanting to treat her for all of her back issues. Mostly our problem was that most of the doctors weren't knoweldgeable enough in regards to a condition called CMT that we believe is an underlying cause of her Kyphoscoliosis. That just made our search even more diffictult.

                        As for Dr. Betz, he is wonderful! He is one of the five doctors we saw and would have been the one we chose to do surgery had we not found a doctor just as wonderful, experienced and knowledgable as Dr. Betz closer to home. The doctor who did the surgery told us we were in excellent hands with Dr. Betz, and really questioned us as to why we were coming to him and not continuing with Dr. Betz, which is always great to hear especially coming from another doctor.

                        If I were you, I'd see Dr. Betz. It definetely can't hurt. If nothing else, you can tell him you have surgery scheduled and tell him what they plan to do. I'm sure he will tell you whether or not he agrees with what is planned for your daughter.

                        Good luck and be sure to let us know what you decide.

                        Mary Lou

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                        • #57
                          mary lou-please read BROKEN WIRE thread by Matt-we've heard from several people that getting surgery from shriners is easily accessable; however follow up procedures and/or appointments can take up to six months for a child to be seen-we are deciding against seeing Dr betz (he wants to see us three days before ariana's scheduled anterior posterior surgery)
                          gregg and cindy parents of gregory, a 3 and a half year old and ariana 20 months diagnosed with congenital kyphosis at four months old-posterior fusion surgery at 13 months (failed) scheduled for anterior posterior hemivertebrae excision surgery at NYU March 28, 2005.

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                          • #58
                            Gregg,

                            Matt is a good friend of mine from this forum and I know he won't be offended by what I'm about to say. Each hospital/doctor is different. For one thing your case and Matt's are totally different. You are dealing with a VERY young child. Matt is a skeletally mature young man. There is a big difference in treatment. My own daughter who is 13 was followed usually on an every four month basis.

                            I will be honest with you. We were told, and again, my daughter's surgery was not an emergency situation, that we would probably have to wait up to six months to get into Dr. Betz' surgery schedule. Dr. D'Andrea's I think isn't as full. Dr. Betz does a lot of teaching which limits his surgery availability. However, we scheduled surgery with our current doctor and we still had to wait two months for surgery and he isn't the Chief of Staff like Dr. Betz.

                            Have you thought of calling Shriner's and asking for references on Dr. Betz? Our surgeon willingly gave us a list of names of people who he's done surgery on their child. Maybe Shriner's would do the same and you can find out first hand from people whose children have been going to Dr. Betz/Shriner's for years. I hate to see you put yourself in financial trouble, but I also understand that you need to find a doctor who is the best for your daughter.

                            Mary Lou

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                            • #59
                              I'm going to call the shriners in philly and see if they can give me an earlier appt. If they can we will go see Dr. Betz, If not we are not going, I am reasonable comfortable with the decision to go ahead with the surgery in NYU, We dont want to be second guessing ourselves 3 days before the surgery,(Dr. Bertz can see her 3/25, her surgery in NYU is schedules for 3/28). I recently had a discussion with linda on another thread about doctors doing charity work overseas and then in america not accepting insurance(Dr Boachie). I was so upset about not getting the best doctor I could for my daughter because of financial concerns, Linda told me that he did a lot of charity work and I should take that into consideration, of course me being so pissed off I said that should't excuse him. I was really upset about the situation... I recently saw a movie called Chernobyl Heart and boy did that movie make me cry... It put my daughters situation in persprective, I should be happy that she has access to medical care there are so many children who aren't so fortunate, things that are easily fixed here cause children to die elsewhere..It's a movie i strongly recommend if you start getting depressed about the USA's medical situation...when I fight with my insurance company next time i will be thinking of that movie.... Cindy
                              gregg and cindy parents of gregory, a 3 and a half year old and ariana 20 months diagnosed with congenital kyphosis at four months old-posterior fusion surgery at 13 months (failed) scheduled for anterior posterior hemivertebrae excision surgery at NYU March 28, 2005.

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                              • #60
                                Cindy,

                                I just wanted to echo what the others said... PLEASE try to get in to see Dr. Betz before deciding on this MAJOR and irreversible surgery. I posted a long and windy novel to you and a/p surgery and recovery, but I think it would be an excellent idea to get in to see Dr. Betz or his colleage, Dr. D'Andrea. Call Shriners and ask for Toni - she is Dr. Betz secretary. I know she is in early, and leaves early.

                                Shriners is a wonderful facility. Shriners in Philly is topnotch. The latest in medical technology is available there. I think you will find the docs there very knowledgeable about Ariana because they are strictly PEDIATRIC docs and they see cases like her much more frequently than most other facilities.

                                Please know we are all sending our best your way, no matter what choice you make. Good luck.
                                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/

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