Announcement

Collapse
No announcement yet.

Help?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Help?

    I'm freaking out a little at this point, so please forgive me if I ramble. My daughter Jasmine (9) was diagnosed when she was 1. We've been bracing and casting since. Recently I learned more about VBS and was looking into that for her. Unfortunately she wasn't a candidate for that. But today her doctor recommended growing rods. Her upper curve is at 47 and lower is 33 currently, and he said that more then likely if we continue to brace she will need to be fused in the next 2 years. If we do surgery it might put it off for another year after that. I'm freaking out that we're so close to her needing to be fused and I'm freaking out over the growth rods. He said he wouldn't recommend VEPTR due to a lot of complications that have errupted over the last few weeks for other kids. Plus Jas is so small (3'9" and 42 lbs) that he's worried about how the VEPTR would effect her ribs. Does anyone have any insight into growth rods? Recovery time after surgery? I have a million questions and can't get them to come out in coherent sentences, maybe if anyone can just tell me what they've been through that would help.

    Thanks!

  • #2
    I thought VEPTR is the same as growing rods. Here is a VEPTR website another forum member posted which I was able to find.

    http://www.veptr.com/wiki/Home.ashx

    I don't know much about this but thought this website might help?

    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


    • #3
      Who was that sweet little girl...

      I don't know much about this at all, but do remember there was a mother who posted a couple of months ago about her little girl's surgery, and I'm sure it was with growth rods... I remember how pleased they were, and that the little girl did so well. The mom had put together a scrapbook/powerpoint type thing, with a link to it, chronicling the whole time at the hospital, etc. They are from England, I'm pretty sure. Anyone know who I'm talking about? If so, Esa could try to connect up with them to find out more... Plus seeing the pictures, how small and sweet the little girl was, and all that might help. Best wishes for finding the information you need-- and for your daughter's surgery.

      I just searched and found the post I was thinking of -- and the link to you tube... the little girl's name is Naomi.

      http://www.scoliosis.org/forum/showt...5278#post55278

      Hope this helps a little.
      Last edited by Susie*Bee; 04-24-2008, 06:53 AM. Reason: add link
      71 and plugging along... but having some problems
      2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
      5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
      Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

      Corrected to 15°
      CMT (type 2) DX in 2014, progressing
      10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

      Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

      Comment


      • #4
        Veptr

        Hola

        Please try not to panic, although I do understand why you would!

        I have information about the Veptr rods on my website and I found the following link for you.

        In recent years, the VEPTR device has gained further recognition in the orthopedic field. Rather than approaching the conditions of respiratory insufficiency at the spinal level or through ventilator support, the VEPTR device seeks to expand and support a deformed chest wall cavity through the use of telescoping titanium rods. These rods hook directly on to the rib cage or pelvis and help to separate and support the chest, giving the lungs room to operate and grow.

        In the case of scoliosis, and to a lesser degree kyphosis, the unattractive option of a spinal fusion is avoided, the leverage is instead placed upon the rib cage. In the other instances of collapsing or constricted chest walls, and spinal growth complications such as seen in Jarcho-Levin, the rods serve to help expand the chest to allow for the child to continue to grow and breathe. In many instances, these children's symptoms and conditions can be slowed, halted, or even reversed!

        As miraculous as the procedure may seem, the device is not suitable for every case. For example, older children and adults would not experience the same level of benefits, as the VEPTR implementation is designed to target the orthopedic challenges involved in treating these conditions on a growing body over time.

        Additionally, and as with any surgery, a patient should be medically stable enough to withstand the rigors of invasive surgery. Furthermore, various levels of complications often arise after the surgery, due to the nature of the implementation. All these factors must be carefully weighed before the decision to undergo VEPTR installation is made.

        In this spirit, we feel it is best for the dialogue between parent and physician to be as bilateral as possible. While you aren't likely to gain a medical degree in order to speak with your child's doctors on equal footing, it is important to arm yourself with as much information as possible. With knowledge comes understanding, and with understanding often comes hope. Please keep in mind that this material has been prepared with the help of other parents faced with similar situations, we do not possess professional medical credentials, and under no circumstances should any information presented here be considered medical fact-- rather it is the operation as viewed by us. Every situation is unique and consultation with your child's physician is required.

        http://www.or-live.com/NYP/1778/index.cfm?source=rss

        I hope that helps and my thoughts and well wishes are with you
        Scoliosis Support, News, Blog
        Twisted and Curved....I like that in a person
        Harrington rod T5 to L1 (1989)

        Comment


        • #5
          A good person to talk to would be Carmell, she is a wealth of information on this stuff. She is on here periodically. If you look around I'm sure you can find a post from her with her email info. Good luck to you-

          Renee

          Comment


          • #6
            Hi Esa,

            Don't panic. There are many differences between growing rods and VEPTR rods. Knowing which one to use for a specific child (they are all unique with unique issues) is critically important. The recent information about rib damage is *ONLY* if the surgeon does a thoracotomy incision. This creates scar tissue. MOST VEPTR patients do not require thoracotomy incisions. The ONLY hospital doing thoracotomy on all VEPTR patients (idiopathic and congenital, both) is Santa Rosa in San Antonio, where the VEPTR was invented. The other surgeons (including Dr. Smith at PCMC in SLC) do not do open thoracotomy incisions unless absolutely necessary. When the VEPTRs are placed - with no thoracotomy - there is no potential damage to the chest/lung function. There is potential BENEFIT because the devices stabilize the scoliosis and support the spine and chest.

            Growing rods are placed directly along the spine, attached (fused into place) at the top and the bottom ribs just beyond the curve of the spine. Both growing rods and VEPTRs need to be surgically lengthened every 6-8 months as the child grows. Jasmine is a small statured kid, but, most VEPTR/very young scoliosis patients are.

            VEPTR rods are placed away from the spine, allowing the spine to grow as normally as possible (given the curve and natural makeup of the spine). Growing rods have been known to promote premature natural fusion of the spine between the rods, because of the friction/movement of the bone against the rods. Any stimulation of the bones cause bone growth to occur, which can lead to fusion before you want fusion done. VEPTRs do not do this.

            Have you had a consultation with Dr. Smith at PCMC? If not, I suggest you do, before agreeing to growing rods. I'm assuming you have this recommendation from Shriners in SLC. Dr. Smith has done more VEPTR implants than any surgeon, except San Antonio (again, where the device was originated). Dr. Smith can discuss with you the pros and cons of both growing rods and VEPTRs in Jasmine's case because of his extensive experience. He has done both growing rods and VEPTRs - again depending on the child's need.

            Good luck. Email me if you want. boulderfam@hotmail.com
            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/

            Comment


            • #7
              Hi Esa,

              Everything Carmell said makes perfect sense (no surprise there).

              I did want to ask/mention one other thing. I know that the doctors at Shriners in Philly recently started performing VBS and VEPTR together in cases where they felt VBS along would not work (generally in larger curves such as Jasmine's). There are apparently benefits to having the staples in addition to the VEPTR in these cases.

              There was also one child recently who did not qualify for the VEPTR (I believe because she did not have any compromise of the chest cavity?) - so they did a growth rod together with VBS. This child also has only a couple of years of growth left so she will only need maybe two "lengthenings" and then they plan to most likely remove the rod and have the staples remain for extra stabilization of the curve.

              When and where was your evaluation for VBS and was this option mentioned to you? (As I said, it only started to become part of their program over the past couple of months).

              Please post or email me if you have any questions about this or if you want to find out more about it.
              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


              • #8
                Thank you to everyone!

                I can't begin to express just how grateful I am to have all of you to talk to, I'm doing a bit better now. We have scheduled a consult with Dr. Smith up at PCMC. It's set for May 20th. They squeezed us in since he was booked out till the end of June, and that was when we were possibly looking into doing the surgery. Dr. D'Astous (Shriners SLC) has been Jas's doctor since she was diagnosed at 1 year old. Back in January I started looking into VBS and had xrays and her records sent back to Dr. Betz in Philly to see if she would be a candidate, which unfortunately she wasn't, Janet said it was due to her curve being so severe and also it looked from the xrays like she might have soft bones. We went to Shriners here in Salt Lake earlier this week to get an adjustment made to Jasmine's brace (she was having a hard time sitting for long periods) and Dr. D'Astous recommended she have the growth rods placed. At this appointment his care coordinator Angie said something about them having a lot of problems with kids who have had VEPTR over the past couple of weeks and that was why he wasn't recommending it. Also because Jasmine is so tiny and the possibility of her having other bone issues. I just don't know what to do, I don't know what decision to make. Jasmine is also getting reverse pull head gear this summer to help correct a severe under bite that she's developed as a result of her cleft palette. I'm just so frustrated since she's already been through so much. I wish that I could wave my magic wand and make all of it go away. She's already been through so much and is such an amazing child, I just don't want to put her through any more crap. But I know we have to do something or else she's going to have to be fused by the time she's 11. I just hope we make the right decision of what's going to be best for her. Right now I'm waiting to see what Dr. Smith recommends (I have a good feeling, call it mothers instinct, about going to see him) I had not heard nor was the combination of VBS or VEPTR mentioned when I spoke with Janet. I think it might not work for Jas, her spine seems to be getting more and more stiff. Even in the bending xrays her top curve only went down to a 38. (this was mentioned as part of the reason why she doesn't qualify for VBS)

                Comment


                • #9
                  Originally posted by Esa
                  I had not heard nor was the combination of VBS or VEPTR mentioned when I spoke with Janet. I think it might not work for Jas, her spine seems to be getting more and more stiff. Even in the bending xrays her top curve only went down to a 38. (this was mentioned as part of the reason why she doesn't qualify for VBS)
                  Hi Esa,

                  I'm glad you are feeling better about things and I think it's a very good thing that you are seeing Dr. Smith soon.

                  I just wanted to mention that if you spoke with Janet more than two months ago, that might explain why the VEPTR/VBS combination wasn't mentioned. If I am correct, they only started doing it recently - in the past few months. If you spoke to her more recently, then I guess there was some other reason why she did not suggest it for your daughter.

                  My son, too, will be getting headgear to wear at night soon for his teeth. My dentist mentioned something interesting when I brought up the fact that David DEFINITELY needs orthodontic work as his teeth are all crowded, in the wrong places, etc. She said that sometimes she sees this (meaning kids whose spines perhaps don't develop properly also have problems with the development of their teeth). Anyone else find this to be true??

                  Esa - good luck and let us know what Dr. Smith says!
                  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


                  • #10
                    Maria,

                    I hadn't heard of the scolio and teeth combo problem before either. With jas, they have always supposed it was only due to her cleft palette since teeth problems are so common with kids with clefts. Maybe the combination has to do with the fact that they both have to do with bones?

                    Jasmine has already had 6 teeth pulled (last June, the tooth fairy took a big hit on that one!) And will have to get more pulled in the future, she'll also definitely be doing braces eventually, but that seems small compared to everything else!

                    As for the VBS and VEPTR combo, maybe I'll email Janet again, and also bring it up with Dr. Smith to see what everybody has to say.

                    Thank you for all of your help and support!

                    Melissa

                    Comment


                    • #11
                      Hi Melissa,

                      David may need to have a few baby teeth pulled also. BUT, his older brother had to have some pulled as well so I'm not sure if it's related to David's scoliosis or not. In fact, as I said, I hadn't thought about the connection between scoli and teeth until our dentist brought it up - and yes, the fact that they are both bones makes sense that there could be a connection.

                      Also, I know they measure how much growth is left by looking at bones (Risser) - I also read recently that kids who lose their teeth late (David falls in this category) will have their growth spurt late - David is kind of small for his age but his brother and dad are tall so I'm guessing he has a LOT of growing left to do but that he'll just be a "late bloomer".

                      Take care,
                      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


                      • #12
                        Interesting to hear the comments about the teeth related to scoliosis possibility, I had never heard that before. But, my daughter lost her baby teeth late (4 had to be pulled because the adult teeth were coming down and out around them, and they would not loosen on their own). Needless to say, she's in braces now (at 12 1/2), this is actually phase 2 of the braces. She had them first at about age 7 for a year, just on the top. We always just thought (and were told) that her teeth were too big for her jaw, excessive crowding... For those that may not have seen my other posts here and there, she had fusion last August. So I wonder if there is some connection???

                        Comment


                        • #13
                          Emma,

                          David's teeth, I'm told, are also too big for his jaw and he has excessive crowing.

                          Hmmmmmm
                          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


                          • #14
                            Teeth and Scoliosis

                            How very interesting about the teeth and scoliosis, I have never heard of a connection before and reading through these posts I am learning so much!

                            A search on PubMed may show results of some papers that were carried out looking at the connections.

                            All the best to your family
                            Scoliosis Support, News, Blog
                            Twisted and Curved....I like that in a person
                            Harrington rod T5 to L1 (1989)

                            Comment


                            • #15
                              I too experienced the crowding teeth problem. However, it’s not that the teeth are too big for the jaw. The jaw just never fully develops to accommodate all those teeth. After wearing braces on and off over a 20-year period because my teeth kept re-shifting to their original position, I found a fabulous dentist who did a lot of restorative work on my teeth when I was in my late 30s. He told me that my jaw was to blame. It just never fully developed. So after restoring my teeth, I had one of two choices. I could have surgery on my jaw to extend it or wear a retainer; otherwise, my restored teeth, crowns and all, would shift again. I decided to wear a retainer which I still do a few nights a week and it has kept my teeth aligned.

                              Comment

                              Working...
                              X