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Thread: New here - 14 yo son surgery candidate

  1. #1
    Join Date
    Jan 2009
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    New here - 14 yo son surgery candidate

    Hello all, I am glad to have found this forum. I have spent a few days on it reading back and trying to find out as much as I can about all this.

    This time last year, my son had no noticable curve. In April he was dx with a 25 degree curve, thoracic, then in October a 30 degree, and last week a 40 degree with rotation. He also has kyphosis (humpback) which didn't show up when the scoli was 30 but is very marked now. He is now 14, and not done growing yet.

    We have an MRI scheduled. He was born with a congential birth defect so I'm sure they are going to check and see if that is anyway related.

    Bracing was never discussed, because the first increase was only 5 degrees and the doc thought it was insignificant then. But we are seeing a new doc and he pretty much agrees with the first. He is willing to brace him but feels at this rate that a brace would be lifelong - that as soon as he quits wearing the brace the curve will continue to where it would have been.

    We feel pretty confident in his, Dr. Michael Schmitz, he did surgery on our son's elbow last fall for a very unusual break and is head of ortho surgery at Children's Hospital of Atlanta. He has published his own research and has added some techniques to the field of scoli, is member of related associations, so that is encouraging. Has anyone here heard of him? I know Oswald is supposed to be good too, but we originally saw another doc in his same practice and I am a little miffed that my son wasn't braced at 25 degrees.

    The surgery Dr. Schmitz talked about sounded like either growth rods or VBS or maybe a combo. DH and I have a lot more questions for him, to find out more about the surgery.

    I absolutely hate the thought of surgery when my son isn't in pain, but this is moving so fast, I hate to wait too long. It sounds like he is at a good age for this surgery, and the doctor feels that he could have more flexibility than he has now. It doesn't sound like bracing is really an option for him. Even though he knows his football days will likely be over (his favorite sport of all time) he is in 100% for surgery. In his words, he'd rather be straight than play contact sports because he won't play contact sports all his life but will use his back all his life. His friends/teachers are starting to notice his back and that bothers him too.

    My biggest fear, of course, is the pain. I hear so much from people who had back surgery and they hurt worse after or they have to have more and more surgery. How was it for your kids? I hear about complications right after (infection, and such) but did any of your kids have long term pain? The hardest thing is to risk long term pain for something that isn't hurting now.

    Also, I know they wake the kids up during surgery to make sure they can wiggle their toes. Do the kids remember that?

    Anyway, I appreciate any insight you guys can give.

  2. #2
    Join Date
    Nov 2008
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    71
    Welcome, Jmom.

    I may be a little scattered with my response, so I apologize ahead of time. I don't know anything about the growth rods or VBS. My son Jesse didn't complain of back pain until a bit after we knew surgery would be in his best interests. Your son may not feel pain now, maybe never will, but may in the future. I don't think pain is always the biggest concern.
    Jesse's surgeon does some general ortho surgery, but specializes in the spine. I was /am very happy with him. If you have any reservations, don't hesitate for additional opinions. Especially since you have more questions about what exactly it is Dr. Schmitz is proposing.
    My son did have complications with drainage and/or infection. That aside, he has been recovering amazingly. Today he started back to school 1/2 days. He is 4 weeks post op today.
    As far the wake up test, the name is deceiving. They do not wake the kids up. They lighten up on the anesthesia just enough for their brains to hear them be asked to wiggle their toes, etc. We were told Jesse would not remember it at all, and he doesn't.
    This forum is great and has kept me sane during some tough times.
    Bethany
    Son, Jesse age 16, fused T2-L1 on 12/15/08

  3. #3
    Join Date
    Jan 2009
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    7

    Thank you

    Thanks, Bethany, it's nice to hear from you although I'm sorry your son had to go through this too. I'm glad to hear he is doing well...

    What was his curve pre-surgery? How fast was it progressing?

    I spoke with the nurse for about 30 minutes today and will meet with the doc to address some things with him before the surgery. But we found out it is a posterior fusion with instrumentation. The doc uses a navigation system too, which I found interesting, that pinpoints where to put the hardware rather than eyeballing things.

    It may be a help in our case that my son (Ethan) is semi-homeschooled. He goes to class 2 days/week and does the other 3 at home. So we should be able to work ahead the week before surgery, be off spring break, then do the next week at home, laying around, whatever works, etc. E said he'd rather lay around doing school, since there's not much else to do, than laying around during the summer LOL

    We spoke to a highly recommended chiro today, even though we kind of knew the answer, he pretty much confirmed that there wasn't anything he would or could do for my son's scoli at this point.

    I just got word that the baseball league E wants to play in will let him be on a team until his surgery, he'll just be last pick probably. This means a lot to us since we're looking at 6-12 months no sports afterward (which will drive him bonkers)

    He's thinking he may become a kicker on his football team. Wonder how long before he can kick?

  4. #4
    Join Date
    Sep 2007
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    Jmom--

    My 13 yo son Sidney had a long posterior fusion 8 weeks ago. He was diagnosed at age 11 with a 30-degree thoracic curve. We tried both Boston and Spinecor braces, and neither one worked for him. When we decided on surgery 21 months later, his curve was in the low 50s. Between then and the surgery date (5 months), his curve increased 20 degrees. It took the surgeons by surprise.

    Based on my experience, if a curve is progressing quickly, it needs attention quickly. My son also has most of his growing left to do, but in our case, there was no alternative to surgery. He also had no pain.

    Surgery: Sidney had no complications to speak of. He was in the hospital for 6 days. He was very lucky (and I think unusual) and his post-op pain subsided quickly. He has had no pain medication of any kind since about 2 weeks post-op. From what I read, most kids are on minimal, if any, meds by the time they go back to school. Sidney went back to school half days at 4 weeks post-op, then the Christmas holidays happened, and he is now back full time. He walks miles every day, and has even been hiking, with no trouble. I'm amazed at how quickly he is healing. During surgery they did do the "wake-up" test on him, but he does not remember it.

    Restrictions: no bending, twisting or lifting more than 5 lb. for 6 months. After that, restrictions are lifted gradually (full bending and a few more lb. at 6 months), but it will take at least a year for all of them to be lifted. Of course, no full-contact sports, bungee jumping, trampolines, sky diving, or jumping on horseback ever. All surgeons have different protocols, but these are typical.

    An MRI is a very good idea. If you are looking for a third opinion, I understand Dr. Betz at Shriners Hospital in Philadelphia will review x-rays if you send them up. He was helpful to us in making our decision. Shriners is on the cutting edge of scoliosis treatment, and he is Chief of Staff there.

    Bethany is right about this forum. There are some very informed parents here who have quite a bit of personal experience, and are very supportive. Good luck with your decision and let us know if we can be of more help--keep us posted!

    Mary Ellen

  5. #5
    Join Date
    Nov 2008
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    Jmom,
    Jesse was first seen in 6th grade(?) when his curve was high teens. The doctor doesn't recommend bracing until the curve is over 20 degrees. Jesse was braced about a year later at 23 degrees. Finally, Jesse's curve was in the 50's when the doctor told us bracing isn't found to be effective over 50 degrees. When he finally had his surgery, he was 68* and had a smaller compensatory curve higher up.
    I would say it has been about 3-4 years that we've been following his spine.
    Jesse's surgery was also spinal fusion with instrumentation.
    Feel free to check out my blog. I have some before and after xrays.
    Good luck and ask away or vent whenever you need to. We've all been in that boat.
    Bethany
    http://web.mac.com/bessiebingo/Site_2/Photos.html

  6. #6
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Jmom,

    Sorry to hear what you are going through and I wish your son all the best.

    While I have not heard of Dr. Schmitz, I have heard of Dr. Oswald and it's all been VERY good. I believe that he was one of the first doctors trained by Dr. Betz to perform VBS. My son had VBS a few years ago so I speak to a lot of parents of other "VBS kids". A few of them had Dr. Oswald as their child's surgeon and they were very happy with him. His name also seems to pop up on lots of papers and he seems to be one of the pioneers in the field.

    As for not bracing your son at 25, perhaps they had their reasons and/or felt bracing wasn't going to work for him - I don't know - but I would certainly bring it up if that thought is nagging at you.

    Also, I am wondering if they are referring to a relatively new VBS/hybrid rod combination. It is used in cases such as your son's when the doctors feel that VBS alone would not be sufficient to halt/correct the curve. From what I understand it has been used in curves that are in the 35 - 40+ range, or curves with too much rotation for just staples, or in cases where a child might not have enough growth remaining for VBS alone to have a good shot at working.

    Just thought I would share this info with you - hope it is helpful - and best of luck to you and your son!
    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/

  7. #7
    Join Date
    Jan 2006
    Location
    PA
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    778
    Hi Jmom,

    Ethan sounds alot like my daughter, except for their ages at diagnosis. Jamie was diagnosed at her 12 y.o. check-up. At the time, her Scoliosis was 36* and her Kyphosis was in the 70's. Although her curves were very close to needing surgery, she was immediately put into a Milwaukee brace, which she just would not wear. The doctors (we had five opinons) watched her closely and her Scoliosis progressed to 46* even though she was almost done growing. This all happened within about a year's time. I know surgery was the right thing for Jamie. Had she not had surgery, her curve would have continued to progress.

    Did she have any complications? Yes. Jamie developed "junctional Kyphosis" above her fusion, which doesn't usually happen, but for some reason it did. We watched that curve and seriously considered more surgery, but thankfullly, the progression stopped on its own.

    Jamie had a posterior spinal fusion with instrumentation and is fused from
    T3-L2. She is four years post-op. Feel free to e-mail me anytime.

    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.

  8. #8
    Join Date
    Jun 2008
    Location
    Mississippi
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    Jmom,

    My daughter is only 11 but she is scheduled for surgery in two weeks. We have only known about her scoliosis for a little over a year. She has two equal curves and a smaller one. Both bigger curves went from 20 to 51 within a year and this was while wearing a boston brace 23 hours a day. Her doctor said that some curves progress rapidly no matter if they are braced or not. Sometimes surgery of some sort is the only effective treatment. You are on the right track. Lots of prayer and the people on this forum have been a huge help to me emotionally as so many people don't understand this disease. Hang in there and investigate your options and you will get a peace about what needs to be done.

    smileyskl

  9. #9
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
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    Hi Jmom,

    My 13 year old son had surgery 1 1/2 years ago when he was only 12. He had minimal pain from the scoliosis prior to the surgery. I think his only pain came due to weakened back/torso muscles caused by wearing a TLSO brace for 3 1/2 years. I know how you feel about subjecting them to surgery when they're mostly doing fine but I'm so glad we did the surgery.

    My son is so glad to be out of his brace and he now has no restrictions other than contact sports. He also has no pain and he was off all pain meds about 2 weeks after the surgery. He was never very flexible so his fusion had very little noticeable impact on his flexibility. We did the surgery in the summer so he had about 7 weeks to recover before having to go back to school. He was so bored by the time school started, he could have possibly gone back a few weeks earlier.

    I believe I was told that they do not wake people up from the surgery anymore (at least at our Children's Hosp.). They do ongoing spinal cord and overall nervous system monitoring throughout the entire surgical procedure.

    Good luck with your decision-making regarding the surgery and please keep us posted.

    Take care,
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  10. #10
    Join Date
    Sep 2008
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    336
    Quote Originally Posted by babachi View Post
    Welcome, Jmom.

    I may be a little scattered with my response, so I apologize ahead of time. I don't know anything about the growth rods or VBS. My son Jesse didn't complain of back pain until a bit after we knew surgery would be in his best interests. Your son may not feel pain now, maybe never will, but may in the future. I don't think pain is always the biggest concern.
    Jesse's surgeon does some general ortho surgery, but specializes in the spine. I was /am very happy with him. If you have any reservations, don't hesitate for additional opinions. Especially since you have more questions about what exactly it is Dr. Schmitz is proposing.
    My son did have complications with drainage and/or infection. That aside, he has been recovering amazingly. Today he started back to school 1/2 days. He is 4 weeks post op today.
    As far the wake up test, the name is deceiving. They do not wake the kids up. They lighten up on the anesthesia just enough for their brains to hear them be asked to wiggle their toes, etc. We were told Jesse would not remember it at all, and he doesn't.
    This forum is great and has kept me sane during some tough times.
    Bethany
    Son, Jesse age 16, fused T2-L1 on 12/15/08
    How's Jesse doing? Any more drainage?

    Marian

  11. #11
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    Jan 2008
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    NC
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    Quote Originally Posted by laurieg6 View Post
    (snip)
    I believe I was told that they do not wake people up from the surgery anymore (at least at our Children's Hosp.). They do ongoing spinal cord and overall nervous system monitoring throughout the entire surgical procedure.
    That is my understanding also. My daughter had electrodes glued(!) to several spots on her head while they were prepping her. I was able to be there for this part. I believe the scalp electrodes completely obviate the need to bring patients shallow any more. Someone correct me if I'm wrong.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #12
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    Nov 2008
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    Quote Originally Posted by pmsmom View Post
    How's Jesse doing? Any more drainage?

    Marian
    Marian,
    He's doing pretty well. He went to school yesterday and today for the morning and was glad to get back. So far no more drainage!!
    Thanks for asking.
    Bethany

  13. #13
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    Mississippi
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    Quote Originally Posted by Pooka1 View Post
    That is my understanding also. My daughter had electrodes glued(!) to several spots on her head while they were prepping her. I was able to be there for this part. I believe the scalp electrodes completely obviate the need to bring patients shallow any more. Someone correct me if I'm wrong.

    That may be true most of the time - I am not sure - but with my daughters surgery, the doctor said they would do both. This may be because she had the previous tethered cord surgery and that can mess with the machines results. I am glad people are saying they don't remember the wake up because that really freaked me out when he told me.

    smiley

  14. #14
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    Sep 2008
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    Quote Originally Posted by babachi View Post
    Marian,
    He's doing pretty well. He went to school yesterday and today for the morning and was glad to get back. So far no more drainage!!
    Thanks for asking.
    Bethany
    Glad to hear it!

    Marian

  15. #15
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    Eagan, Minnesota
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    Jmom~ I think the surgery is tougher on the parents than the kids. I had surgery when I was 12 (I am 26 now) and I am just fine. I had total fusion and my scoliosis is in control. Sure, I have pain sometimes but not more than I had before. I didn't have any complications with infections or anything afterwards.

    As far as the waking up part, that terrified my Mom too. The good news, I don't remember any of it. Should your son have the surgery, the hardest part for me was that my back itched so much after my surgery. Its because the nerves are growing back. There really is no way to get to them since it feels like you are trying to itch through cardboard. Silly as it sounds, that is the part that bothered me the most. I got most of the feeling back in my back but there are some parts that don't have it.

    OH, and you mentioned sports and stuff. I am not a really "sporty" person but a friend of mine also had fusion surgery on his upper back when he was 14. He never let it stop him. He has actually become a great wake boarder and participated in the X Games and is a nationally recognized Wake Boarder! Surgery doesn't have to stop your son from doing what he loves!

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