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  • Hershey Med Center or John's Hopkins folks?

    [I]Hello everyone. I am new to this, so if I didn't put this in the right place, somebody tell me! I have an 11-year old daughter diagnosed with a left thoracic curve in November of 2006. At that time her curve was 26 degrees. I was shocked - did not expect that. We were told to come back in 4 months, so we took her back to an orthopedic specialist last week on Tuesday. Her curve has rapidly progressed to 33-1/2 - 34 degrees and she is risser 0. We were given the option of bracing for 21 hours a day for 2-3 years with no guarantee or doing a wait and see, with the very real possibility of surgery. My daughter does complain about her back bothering her but only a little bit. She sometimes complains that when she lies down at night she has trouble breathing, related or unrelated I don't know. She is totally against the brace and says there is no way she will wear it for that long. And I have to say I feel it is unfair at her age to ask this of her. We are still comtemplating what to do, but...if we eventually look at surgery down the road, has anyone had any experiences with Hershey Medical Center or John's Hopkins Medical Center? I am not sure we will have a choice, but was wondering if anyone could provide any info. I want to do research on these two locations and any extra info. would be great.

    We are new to this and are still gathering tons of information. I feel like I could sit in front of the computer forever and still have questions....this is a great tool! Thanks for listening....

  • #2
    My daughter is 2 years post-op and had her surgery done by Dr. Lee Segal. Dr. Segal works out of Hershey Medical Center (HMC). Dr. Segal was our 5th opinion and I would only allow him or our 4th opinion (Dr. Betz at Shriner's of Philadelphia) to do Jamie's surgery. Having said that, when we started at HMC, there was I think 4 ped. ortho. and now, Dr. Segal is the only one. I'm not sure if he is accepting new patients or not, but it wouldn't hurt to try.

    Jamie and I also run a Scoliosis support group out of HMC. Feel free to e-mail me or respond here if you want more info on the support group, Dr. Segal, surgery, etc. Spinesupport05@aol.com

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

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    • #3
      Unfortunately I do not have any info on the facilities you are asking about however with your being in PA I would suggest Shriners Hospital in Phladelphia the physicians there are AMAZING.

      They offer many cutting edge treatments and the physicians are wonderful. They take their time with you and with your child. The team at Shriners Philadelphia is led by Dr. Randall Betz.

      We travel from Texas to Philly and could not be happier with the treatment thus far.

      Good Luck.

      Amanda
      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

      Comment


      • #4
        Thank you.

        Thank you both very much! I have written down the name (Dr. Segal at HMC or Dr. Betz at Shriners). We take my daughter back in September for another reading so I won't know until then what we are looking at.

        In the meantime, Snoopy, I may be contacting you regarding your support group and further information about HMC.

        Any help is so appreciated!

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        • #5
          tkrame,

          Do you think your daughter still has lots of growing to do or do you think she is near getting her period or has she already gotten it? Sorry to ask personal questions. My daughter would die if she read what I just wrote.

          If she has lots of growing left, she could be a candidate for stapling or the spinecor brace. You can read a lot about both of those options on the threads here.
          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


          • #6
            To Matjesnic

            Thanks for the info. Actually my daughter just got her period 3 months ago. Her orthopedic doctor said she is risser 0 and still have 2 to 3 years of growing to do, based on her xray last week. I have never hard of the stapling procedure before I saw it mentioned on this site. I will check into that option, if we need to proceed to a surgical method. Right now we are playing the "wait and see" game as her next appointment is not until September. We are hoping that the curve slows down or stops by the time her growing is contained to the point where surgical intervention is not necessary.
            I am going to do some further research into the stapling procedure and just get as much info. as I can prior to her next appointment. If she is recommended for surgery, we will definitely get another opinion.

            Thanks for the info. This just seems surreal to me...I can't believe this is my daughter I am talking about.

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            • #7
              You should probably talk to surgeons at both. My daughter was recently operated on by Dr Sponseller at Hopkins and no complaints so far. I would recommend that you make an appointment with him.

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              • #8
                to Bamaro

                Thank you for the information. Do the doctors typically see patients before the final determination for surgery is actually made? We don't have the answer yet for my daughter, unfortunately. Believe me, life would be much easier if we did know where for sure we were headed.

                Were you referred to Hopkins or did you choose that on your own? Just curious. How long did you wait to get an appointment?

                Comment


                • #9
                  tkrame,

                  If your daughter got her period, then I don't think they will consider her as a candidate for stapling. Of course you should still ask because I am not a doctor. I just know that when we took ours to see Dr. D'Andrea, as soon as she heard the word "period" she said "no" because her major growth was behind her. Also because her curve was at a 40. It is possible that your daughter will only grow another inch or two.
                  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


                  • #10
                    tkrame,

                    I agree totally with Amanda. We travel from NY to Philadelphia to see Dr. D'Andrea at Shriners. We have dealt with other doctors there as well - and they are all awesome. We have good insurance and no shortage of doctors in NY, but you can't beat the care or the environment at Shriners. My son actually LOOKS FORWARD to visits to Shriners.
                    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


                    • #11
                      Originally posted by tkrame01
                      Thank you for the information. Do the doctors typically see patients before the final determination for surgery is actually made? We don't have the answer yet for my daughter, unfortunately. Believe me, life would be much easier if we did know where for sure we were headed.

                      Were you referred to Hopkins or did you choose that on your own? Just curious. How long did you wait to get an appointment?
                      When my daughter's pediatrician first diagnosed her, I checked around a lot for a good ortho. The two that I finally decided on were Dr Sponseller at Hopkins and Dr Betz at Shrinners in Phila. Saw both and went with Sponseller because they were both equally good but he was more convenient. I think I had to wait around a month or more for the appointment. He was my daughters doctor through the 14 months that she wore a brace. Then when she needed surgery, I had Dr Sponseller do it at Hopkins and I have no complaints at all about the outcome. Even though you are using another doctor for bracing, you still have a choice and can change for surgery. Even if you are comfortable with Hershey, I would still recommend going to at least one other Dr for a second opinion before having the surgery. You cant believe the piece of mind that it will give you.

                      Comment


                      • #12
                        You really need to talk to Melissa(MATJESNIC) she can give you first hand info on the spinecor brace. For anyone needing to wear a brace it's a great alternative to the typical hard brace because it is a soft friendly brace.

                        We did not hear about spinecore until after Lorena had the stapling procedure but it is something we would have considered.

                        Keep in mind that brace wearing offers no guarantees but sitting back and just doing the watch and wait gives you a much better chance of surgery in the future.

                        Had lorena been a bit older we would have chosen brace wearing over surgery but at her young age I just couldn't see her in a hard brace for 8+ years.

                        Talk to Melissa and get more info on the spinecor brace, it may be what your looking for.

                        Amanda
                        [/COLOR]
                        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

                        Comment


                        • #13
                          Do the doctors typically see patients before the final determination for surgery is actually made?

                          For us, I was searching for a surgeon, not just a doctor from the time Jamie was diagnosed. Although surgery wasn't mentioned immediately for Jamie, I wanted a doctor who could follow her through her brace wearing and do surgery if needed. I didn't want to see one doctor for her brace and then if she progressed have to start all over with a new doctor. With going for several opinions before she needed surgery, I felt I had the time to choose the doctor who was right for Jamie and I feel I did.

                          Mary Lou
                          Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

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