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14month old with congentile scoliosis

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  • #31
    Hi alison this is cindy ariana's mother. We just got back from childrens hospital of philly and the doctor there recommended to us to avoid doing another surgery so close to the first one, even though her first spinal fusion failed and her curve is returning. His exact words were keep her in her brace for 23 hours out of the day for 6 months to 6 years. However long it takes as long as her curve isnt progressing. I'm thinking to myself, Is this guy crazy!!! He wants my 19 month old daughter tO WEAR A BRACE FOR THE NEXT SIX YEARS!!!! I was actually leaning towards doing a second surgery now me and gregg (my husband) are all confused. when did you start wearing your brace? did you wear it for several years in a row? my daughters therapist is telling me that it can adversly affect all the muscles in her trunk. Did you have aggressive therapy while you wore your brace? did it affect your muscle development in your trunk, stomach? We are going back to our doctor in nyu on feb 3rd to discuss which psth we should take to try bracing or go ahead with the anterior-post spinal fusion, which the doctor in philly strongly does not recommend since he says ariana is too young any help will be appreciated! 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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    • #32
      G'day

      Before I wrote my reply, I put a lot of thought into it and asked my Mum lots of questions so I could give you the best (and most honest answer) that I could. In my traditonal fashion, I'll probably think of more stuff after I've posted it, so I'll probably add to it.

      Scarily enough your questions got me thinking, and I wondered just how many days I wore the brace for all up; 2555 days in a row for 23/24 hours a day when I was little then a further six months only at night then 730 days ish when I was older for 23/24 hours a day, whew what lots of days....but strangely it never seemed like that much. I was diagnosed with Infantile Idiopathic Scoliosis when I was 15 months old and put into a brace sometime between then and 18 months of age. Against my doctors beliefs that my parents could cope......but my parents did :-) and made the decision very early on not to mollycoddle me or treat me any different from my sister, and to not prevent me from doing anything I would put my mind to.

      I did wear the brace for many years in a row. I wore it up until I was about 7 years of age full time, then a further 6 months only at night. I was then "brace free" for approximately 4 years, and was re-braced at age 11 until my spinal fusion at age 13.

      In case your wondering, the type of brace I wore was a TLSO (basically the same as a Boston Brace). The brace went around my body and was fastened with velcro straps at my back (when I was little so I couldn't play with the straps and pull the brace off)It went from under my arms to the tops of my legs (over the hips and a bit more from there to about my buttocks)

      I asked my Mum whether I had any agressive therapy when I was in the brace. She said the only therapy I had was swimming a couple of times a week from a very young age. And except for that my only kind of therapy was normal kid stuff such as running around, hanging upside down on monkey bars, throwing balls playing on the playground etc. Mum couldn't get me to sit still and I never saw the brace as an obstacle to doing something, it was just something I wore :-)

      Wearing the brace did not adversley affect the muscle development in my trunk/stomach. In saying this, I met all the usual "development levels" and whilst my muscles weren't quite as strong as "normal persons" they still were able to develop in the brace and weren't too far behind. Out of the brace I wasn't a particularly floppy child muscle wise and as far as we know (it never came up in surgeon's visits) did my muscles become atrophic (muscular atrophy) . I even learnt how to "slouch" in the brace, which I thought was pretty nifty. When I came out of the brace when I was little, I didn't feel any difference muscle wise, but I did feel a difference when I was older and came out of the brace. You do feel a bit less supported muscle wise without the brace, but I didn't notice much otherwise.

      But what also has to be remembered it that I didn't have any other "issues" that are often found in congential scoliosis cases. The affect on muscles from a brace in a congenital scoliosis case might be different, probably something worse investigating further, I'm not really sure; my knowledge of congential scoliosis/ congential kyphosis is pretty limited. All I had was the curavatures in my spine and also Asthma (which they believe can be contributed to the fact I had two thorasic curves and decreased lung function).

      Having worn a brace for as long as I could remember when I was little I saw wearing a brace as the most normal thing in the world and thought people who didn't wear braces were strange. And Mum decorated it with stickers so I thought my body was really cool. I had problems with skin lesions when I was growing up, with the Australian weather (quite hot and humid) this was a problem that we were inevitably going to run into. Mum kept on top of this by changing my singlet that I wore under the brace at least twice a day (sometimes it was up to four times a day in the height of summer) when the singlet became sweaty and wet (which is a pretty gross feeling trust me :-)

      I don't feel scarred for having worn the brace from so young and don't blame my parents for it. My childhood felt the most normal in the world and no different from other people. It was difficult when I was older, but there where many reasons behind it that contributed it to being difficult) When you wear it (whether it be glasses, hearing aids, back braces, use a wheelchair etc) from a very young age, you see it as normal and don't feel any different from anyone else and just get on with being a kid. And kids are inquisitive but also very accepting from peers who are "diferent" at a young age (ie going into Kindergarten) and just accept who they are

      I can't even imagine how it would feel to be told to put your child into a backbrace for up to six years it would be a difficult thing to be told as a parent. The only thought that comes through my mind (which you've probably thought about lots) is have they found out why the first fusion didn't fuse, if they did the fusion too soon could they run the risk of the fusion not taking again ??.

      By providing my insight and my experiences I hope I have been of some help to you, if you have any more questions or I didn't explain stuff ok feel free to ask me. I know you and your husband have lots of stuff to think about over the next few months and you have my very best wishes

      Regards

      Alison
      Last edited by Alison; 01-19-2005, 07:59 AM.

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      • #33
        Hi Smedina

        I saw from one of your posts that you were worried about Hannah getting sweaty in her brace. My daughter Genevieve's brace has little holes here and there - they look like they were made with an apple corer - which were intended to help with a bit of ventilation. We call 'em 'tickle holes' and have had lots of laughs with them - which might help Hannah get used to it as well.
        Genevieve is 17 now and expecting surgery sometime in the next two or three months (no date yet but that's when they predicted we'd get to the top of the waiting list). She's been in a brace of one kind or another since she was not quite three. She accepted it really easily but really has no mobility anyway (cerebral palsy) so it's not quite the same as Hannah.
        Hang on in there.
        Lorrie

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        • #34
          alison's post

          Thank you Alison for taking the time to post an honest straightforward reply. This Is Gregory and I am sure my wife will think of other things to inquire about but for now, let me just say thank you and God Bless You.
          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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          • #35
            I need some advice. We have gone to several doctors about our daughter Ariana's congenital kyphoscoliosis since we were told that her first posterior spinal fusion has failed. All are in agreement that she need a second more complicated procedure called an anterior-posterior spinal fusion with a hemiverterbrae excision. I don't know if anyone has had a child, or they themselves, have underwent such a procedure. What they do is actually remove the abnormal area of spine, in our daughters case T12-L2. They then reconstruct the area using bars, screws wires etc. The reason we are seeing so many different doctors is that our doctors, even our second opinion, do not seem to agree on WHEN such a procedure should take place. According to our doctors this procedure will solve all of Ariana's problems. It will permanently cure her kyphosis since the reason the curve exists will not be there anymore(the abnormal spine). One doctor thinks we should do the procedure now, why wait he says, she is young she will heal fast, she will not remember the procedure and since there is a considerable recovery time she does not have to worry about school. The other doctor thinks we should keep Ari in the brace as long as possible as long as six (6) years. He says the bigger she gets the better hardware they can use the SAFER the procedure is. I am going to be very honest, I want to do this procedure within the next six months. My husband disagrees. He thinks my reasons are very selfish. I want this whole thing to be behind us, I want my daughter to wear pretty dresses without a big bulky brace underneath, I dont want to go the doctor every 4 weeks, Get XRAYS every 4 weeks. I want to go on vaction to a hot climate without worrying about my daughter getting heatstroke from her brace. I want to go to the beach!!! I want my life to continue without the constant worry about doctors curves and operations. There is a big downside. Ari had a very bad experience in the operating room for her last surgery, and I dont want to put her through that experince again... Any advice i am desperate!!! 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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            • #36
              Hi Cindy, I'm Hannah's mom (smedina1) and I'm not sure yet but I believe that is what they have planned for Hannah. I'm going to talk to my doctor in two weeks, but I know that I'm pretty sure that they wanted to remove the 2 hemivertibraes and they said that it would correct her kyphosis too. Again I'm not positive but I think that is what they are going to do. She will still have the rods in and will have to go in every 6 months to a year to adjust because of her growth. But they told me that especially because her curve is increasing that they wanted to do her surgery when she is about 2 to 3 years of age.
              I'm going to get more info when I see her doctor.
              I hope this helps.
              I know that this is very upsetting and you want to do everything for her. I have heard that kids heal very quickly too. That is what I was told.
              Just make sure two are on the same page. I know at one time I took Hannah to a chiropractor and my husband didn't want me to so I stopped. We had to agree on it ortherwise it could lead to arguements.
              If you can think of any questions I can directly ask our doctor and I couldn't think of let me know.

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              • #37
                Well, we just returned from Minnesota the other day. We met with Dr. David Polly of Fairview University Medical Center. He was very knowledgable. Through an X-Ray we saw that our daughter's wire fixture on her fusion area has broken. It hasn't caused any pain yet, but this is obviously not a good sign. He feels that another surgery is imminent (from 6 to 12 months). He also believes that posterior screw surgery is the best option. He has performed this surgery in children as young as one year old and has had positive results. It's a shame that Dr. Polly does not take our insurance because we would love for him to do the surgery. He did give us the name of a doctor in New York from the Hospital for Special Surgery. The name escapes me now but we don't know if that doctor takes our insurance. We paid out of pocket for this Minnesota trip and the doctor visit because we wanted the best for our daughter. Dr. Polly said that the anterior-posterior hemivertebrae excision is a viable option but it is the most riskiest of the options because of the location of Ariana's congenital kyphotic deformity. We hace two doctor appointments next week with our pediatric orthopedist and our spinal surgeon. We will discuss the other opinions and hopefully come to a consensus about our daughter's surgical future and options. If these doctors do not feel comfortable doing the screw surgery, then we may have to find other doctors who will. We will keep you guys updated after next week. Thanks and keep posting!
                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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                • #38
                  Question for SMedina

                  SMedina, Dr. Polly told us that when it comes to congenital kyphosis (what Hannah has) the anterior-posterior hemivertebrae excision surgery is the most riskiest depending on the location of the abnormality in terms of possible spinal cord involvement. Ariana's deformity is between T12 and L2 and he says this is a risky area. Where is Hannah's defect and did your doctor discuss risks? Our primary doctors really never went over the risks but rather accentuated the rewards. For our case, the risks outweigh the rewards. Make sure you go over the risks, (spinal cord, blood loss, recovery time, brace issues, pain management etc.) please write back, thank you.
                  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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                  • #39
                    Hi greggo72,
                    Sorry I haven't gotten back to you. Today is the first chance I've had to reply. Hannah got her brace (TSLO) and she is doing wonderfully. We call it her "pretty". We say look how pretty.
                    I say hands up and she lets me put it on. She has to wear it for 23 hours a day until Wednesday when her doctor takes xrays and lets me know how long she will have to wear it.
                    I'm nervous about her appt on Wednesday just because I always get nervous.
                    I've written some questions down for my dr. Can anyone think of any questions I should ask him. I always think I'm not asking or I'm forgetting something.
                    A few are:
                    Whay type of surgery will she have?
                    Where is her deformity?
                    Donating blood, what type does she have?
                    Any fusion being done? I don't believe so
                    What about her kyphosis?
                    Are the rods going to be there the rest of her life?
                    Are they going to remove her 2 hemivertabraes?
                    Get the name and number of someone who has had the same surgery as Hannah
                    Anything else I should be asking?
                    Please help
                    Thank you
                    See I don't know where her kyphosis is I know her scoliosis is in her lombar area.
                    Thank you for listening.

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                    • #40
                      Glad Hannah's brace seems to be going well so far.

                      One qu's come to mind, which might be useful to you

                      : What is Hannah's lung capacity like?

                      Regards

                      Alison

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                      • #41
                        Alison,
                        Thank you for your question and I did ask him and he said that her lung compacity is not compromised. So I didn't have to worry about it.
                        I found out that her sacrum, the bottom of her spine, is also curved and she needs to have a CT scan next week to see the area. He doesn't know why it is curve he can't tell by the xray.
                        It may be another hemivertabrae. I'm nervous about that.
                        They have to put her under sedation.
                        They also had to adjust her brace. Her curve increased 2 degrees, but it could of been before she had her brace. She only got her brace one week ago, so the increase could of happened before she got her brace.
                        They modified her brace so it's a bit red in that area.
                        Dr. Hensinger believes that the brace will work. I'm praying.
                        Her area of deformity is in her T-12 and L-5.
                        And her sacrum.
                        Thank you all so much for listening.
                        Also, has anyone had any problems with their childrens sacrum????????
                        If so please let me know
                        Thank you again

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                        • #42
                          Smedina, the sacrum doesn't involve the spinal cord according to our doctor-so it should be easier for your doctor to correct.
                          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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                          • #43
                            our daughter went to see her pediatric orthopedist today and he wants to perform another surgery using wires and hooks to correct the increasing curve and lack of fusion in the deformity area. he believes that the more aggressive methods suggested by other doctors was too risky at this point and feels a more conservative approach is warranted. since this surgery is not considered a 100% cure my wife wants a more permanent and direct solution to the problem where another surgery is unlikely. the doctor in minneapolis(Dr. Polly) wanted to put screws in and remove a piece of her spine called the pedicle(the piece that connects the verterbrae to the back of the spine) to get a more solid fusion. It's funny that you asked about the lower part of the spine smedina, Dr. Vanbosse said the surgery Dr. Polly recommended is good for the lower spine since you don't have to worry about spinal cord invlovment, he said where Ariana's abnormality is T12-L2 there is spinal cord and there is risk that it can hurt her spinal cord. She also has to go for a Cat Scan to see exactly where her spine lays because at her abnormality her spinal canal narrows, he is very concerned about hurting her spinal cord. We may have look for a new doctor.... We don't want to but we need someone who will listen to us.... If by next month we can't come to an agreement we may go to Beth Isreal and see a doctor there who just moved here from France... Smedina you still didn't say what kind of surgery Hannah is getting? Do you know yet?
                            Cindy and Gregg Keep us posted
                            Last edited by greggo72; 02-02-2005, 08:44 PM.
                            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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                            • #44
                              smedina1,

                              I'm sorry to hear you found out more about your daughter's spine issues. I have a friend who's 4-1/2 yr old has hemi-sacrum and an extra lumbar vertebrae (half, anyway). My friend has had 2 in-person opinions, and 2 opinions from well-respected ped. orthos via email. The majority agree on treatment, which is to try to lift the lumbar spine out of the pelvis before gravity continues to pull it down. I would hope you would consider getting an opinion from an ortho who has seen this kind of situation - not many have - even if they say they know how to treat it. Ask outright if they have actually done surgical intervention for this situation. If you need names of other orthos (I think we've talked about this before) I think Dr. Betz at Shriners in Philly is a great option. He seems to have treated these kids more than most. Good luck with your treatments!
                              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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                              • #45
                                we applied to shriners but the clock is ticking we have to have a solution in 3 months that is the deadline the doctor gave us. 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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