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Thread: 12 YO Son Needs Surgery

  1. #1
    Join Date
    Nov 2010
    Location
    Spring, TX
    Posts
    29

    12 YO Son Needs Surgery

    Hello all, I'm new here but have been reading the threads on here for about a month now. My 12 year old son has had chiari malformation and scoliosis since he was a cute little toddler. We noticed the not so straight spine then through doctor visits found the chiari. He's had decompression surgery and stint inserted back when he was 3 & 4 yrs old. He is growing like a weed and we were told he'd need the surgery for rods & pins now. Apparently he has large growth plates in his spine which tell the docs he will be tall and will not stop growing until he is at least 18 years old. His scoliosis is not anywhere from 53-59 degrees (three orthos read the same x-ray differently 53, 54 & 59), and the newly formed lower curve is at 33. He has started having difficulty breathing, he says it's normal but it's not. They even stopped him while he was doing his MRI Sunday and asked if he was okay, he told them yes so they asked why he was breathing so heavily and he said that's just the way he breathes. It's progressively gotten worse, I don't understand how he doesn't see it. He's also started complaining of headaches and some back pain. Back pain was bad enough one day that he sat himself out of a baseball game. He has a high tolerance for pain so now that he's asking for aspirin it really is concerning me. He says he has numbness in his right arm, not completely numb but numb enough that he tells people to hit him as hard as they can in that arm because he doesn't feel it too much-BOYS!!!!

    I'm at peace with the need for surgery, my hubby is really struggling with it, and my son thinks he is a macho man and can handle anything. I really hope he keeps up the positive attitude. His ortho took him out of football but said baseball was fine. 2nd opinion said let him play football until he has surgery, but by that time season was over so he missed it anyway. He was HEART BROKEN when football was taken away. He is also not too happy that he will miss the spring season of baseball.

    Whoever thought of putting this forum together is AMAZING! I have read through so much of the threads and have formed my questions for my ortho from here. I couldn't put into words what I wanted to know before, and through reading through the information posted I've got my list of questions. And it's a short list so that I don't drive the ortho crazy!

  2. #2
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    740
    If you guys live near a shriners hospital for children they provied orthopedic care at 19 hospitals They have the best spine surgeon in the world
    Kara
    22 years old
    Posterior Spinal Fusion March 10,2010
    Foot Surgery November 25,2014

  3. #3
    Join Date
    Jul 2009
    Location
    Missouri
    Posts
    67
    Hello, My son is 11yrs old and just had surgery 8weeks ago. My son was diagnosed at 4 with chiari,syringomyelia and scolio, you said your son had a stent? may I ask was it for his spine or the flow in his head? My son had a syringopleural shunt last year his syrinx was not going away after 2 decompressions. I was told when my son was 4 because of the syrinx his scolio would progress and it did even though he was braced off and on. My son has spinal cord damage is weaker on the left side ,and lost partial feeling on his right... Was yours sons MRI to check his spinal cord/brain or the spine? I would make sure they are checking for syringo before proceding to a spinal fusion.
    Kelly
    mom of Cameren 12 yrs. old
    Chiari,retroflex odontoid,syringomyelia,scoliosis
    Chiari decompressions 6/2005,5/2006
    Syringopleural shunt 6/2009
    Boston Braced off & on 6.5yrs
    scoliosis surgery- 9/15/10 T4-L4 Dr. Bridwell
    Fell & broke finger,surgery 3/2011

  4. #4
    Join Date
    Nov 2010
    Location
    Spring, TX
    Posts
    29
    We do have a Shriners in Houston, I looked into it when I first found this site. The problem is that it's 3-4 weeks before we see a doctor and in the meantime he is literally growing before my very eyes. It's strange how fast he seems to be growing considering my hubby and I are not very tall at all, and Alex just turned 12. He already grew an inch in the past month and all i can think is what has that done to his scoliosis?

    CamsMom, my son has had 3 MRIs this year two to check if there was any fluid build up and one to check the flow of the fluid. His stint was inserted into a cyst of fluid in his spine when he was about 4 yrs old. The cyst had the small area inside your spine open to the size of a quarter (normal size is the size of a period at end of sentence). Neuro said it collapsed his spine so quickly and fluid gushed out when stint was inserted. He had severe headaches which docs told us was similar to brain freezes because it collapsed so quickly he got some air in his spine. To this day he doesn't get brain freezes when he drinks something cold, he gets the freeze/pain in his spine. STRANGE!!!! It's been that way so long he can't tell you what a brain freeze feels like but he can tell you what a spine freeze (that's what he calls it) feels like.

    His neuro surgeon said that as far as his Chiari it really looks good and there's no need to go in and do anything to it. He has a SMALL (1cm) build up in his lower back but neuro said he would have to go into his spinal cord in order to do anything with it. He said that would be too risky, he wouldn't suggest it since it's such a small build up, and it has not progressed at all in size in the last few MRIs. You said your son has had spinal cord damage and has lost some feeling in his limbs, how much feeling has he lost? I've brought up the numbness to the docs and they do agree it's not the scoliosis, but the Chiari, but neuro surgeon said he's gonna talk to the ortho about it and we'd hear back from them.

  5. #5
    Join Date
    Jul 2009
    Location
    Missouri
    Posts
    67
    My sons syrinx was a holocord syrinx, entire spinal cord width and diameter, his shunt is at T7-T8 they did go into his cord and make a incision to place the tubing to drain the syrinx it has drained about 75 % , I was told the Syrinx was causing the scolio not the chiari, also the syrinx damaged the spinal cord causing the weakness in his entire left side, when they did his shunt surgery he has numbness on right leg , buttock and back... so now both sides are affected but before the spinal fusion he could walk,ride a bike ,run all with some difficulty but un-assisted .
    He is taking longer then normal time to recover from his spinal fusion,went yesterday for his 8 week checkup was told he still has to use walker for another 2 months and we scheduled a 4 month followup. When he tries to walk without his walker he is really struggling and his legs shake.
    Kelly
    mom of Cameren 12 yrs. old
    Chiari,retroflex odontoid,syringomyelia,scoliosis
    Chiari decompressions 6/2005,5/2006
    Syringopleural shunt 6/2009
    Boston Braced off & on 6.5yrs
    scoliosis surgery- 9/15/10 T4-L4 Dr. Bridwell
    Fell & broke finger,surgery 3/2011

  6. #6
    Join Date
    May 2010
    Posts
    47
    Hi!

    Just wanted to chime in and say it sounds like your son has a great attitude and that is a LOT of the battle. Most kids do just great with this surgery. And from the posts I read from adults on this forum, they mostly do very well, too.

    My daughter was fused in June, and at her six-week appt she got the go-ahead to run. She ran on the Cross Country team this fall and went to every meet to run a 4K and missed only one or two practices (they ran for miles at practice after school). She did not play fall soccer (her main love), but we are hopeful that she will get the go ahead to play this spring. It is really tough to tell an athlete they have to sit out, I know, but I think these athletes just find something . . . like running, in my daughter's case. And before she could run outside, she was in the pool, running in the water.

    Hang in there! I also think athletes probably just generally have a better time with a major surgery like this, so your son should be in great shape (emotionally and physically) for it.
    Jill, mom to 14-year-old daughter who had spinal fusion surgery (T3 to L1) June 21, 2010. (Pre-op curves 52T and 30L.)

  7. #7
    Join Date
    Nov 2010
    Location
    Spring, TX
    Posts
    29
    Well Kelly, my heart goes out to you and Cameren. I will put him on my prayer list that God would heal his body quickly and completely. Just yesterday I was telling Alex that there was a mom I had heard from whose son has Chiari and Scoliosis and that he was close in age. Will the syrinx drain completely or has it drained all that it will? So did the syrinx start out small and then get larger in size?

    Jill, thanks for responding. It's good to hear your daughter has done so well and was able to return so quickly. And, the fact that she's running all those miles already....wow, I had to call my husband and read him your post! The ortho told us Alex should be able to play baseball again after the surgery (depending on how much is fused), and hearing how quickly your daughter was able to return to running I'll cross my fingers that he can return just as quickly. Me and my hubby have always believed that being so active really is to his benefit. Sometimes I really feel like a crazy mom over thinking every pain (or lack of), twitch, and complaint he has, but I'm so used to him being such a tough kid. He fractured the growth plate of his thumb in the 1st quarter of a football game last year and played the entire game. After the game when we were standing around talking with team mates and family he asked me if the size of his thumb was normal....it was HUGE! Anytime he's been hurt during baseball his coaches don't even run out to him to see if he's okay, they ask, he nods, game continues. I can't tell you how many umpires have gotten a kick out of him, I just cover my face and tell myself he really would tell us if he was hurt. He once played 3rd base with tissue hanging out his nose, he was hit in the nose when the kid slid into base and it bled but instead of sitting he stuck some tissue up his nose and game on.

    I think all the waiting around for something to happen is what's driving us crazy (by the way, hubby is really having a hard time with all this)! We were told back in August he would require surgery, then it was appointment here and there, and check back with us in a week so we can talk (Neuro & Ortho)....and knowing that he needs it, and being told that "growth is his enemy....the only enemy to scoliosis is growth", but still not seeing decisions being made for his surgery date really makes it difficult as a parent to sit back and wait. When he grows all I can think is oh no, he's growing. I changed his ortho and I hope it wasn't a bad decision. His office was really bad about responding and they weren't very friendly when they finally did. I spoke to his nurse and asked that his notes from our visit be sent to the neuro because they never received them, she repeated everything including fax # back to me then I get a message late afternoon with ALL the wrong information. She named the wrong doctor (ORTHO), asked what School note needed to say, and where to send it, left her first name only and a # I could NEVER get through to. I kept asking myself if I really wanted to deal with this office after my son's surgery. We heard positive things about his doc but he wasn't his doc for very long, the orthos seem to go in & out of Tex Children's. His last one left so we were passed to this one. I called another doctor who also works with TCH, spoke to his assistant (didn't give names) but expressed my concerns with current Ortho, told him of my son's chiari and which Neuro surgeon he sees. He spoke to the doctor and called back and gave us an appt for an office visit, said he will review my son's info, get with neuro surgeon, and if he needs surgery they'll have him penciled in for surgery Dec 22nd.

  8. #8
    Join Date
    Jul 2009
    Location
    Missouri
    Posts
    67
    Hello,
    when my son was diagnosed at 4yrs old it was full cord so we really dont know anything before then, it is now drained as much as it will ever be , hopefully it stays that way. Most of the kids who go in without other issues do great with this surgery. We of course were not expecting for this to drag on. ITS GREAT that you have the neuro involved in the whole process Cams neuro actually came in during surgery to check once the screws/bars were in place and came out talked with me in the waiting area.
    Dec 22 thats a hard date, your son will be in hospital for Christmas.
    Hopefully you can get some better answers soon. take care
    Kelly
    mom of Cameren 12 yrs. old
    Chiari,retroflex odontoid,syringomyelia,scoliosis
    Chiari decompressions 6/2005,5/2006
    Syringopleural shunt 6/2009
    Boston Braced off & on 6.5yrs
    scoliosis surgery- 9/15/10 T4-L4 Dr. Bridwell
    Fell & broke finger,surgery 3/2011

  9. #9
    Join Date
    May 2010
    Posts
    47
    Hello:

    I finally had time today to read through this thread some more and I think you are definitely doing the right thing, looking around for an ortho that you can work with. My daughter's surgeon and perhaps just as importantly, his nurse practitioner, were like part of our family when surgery was looming, when she had the surgery and when we were all at the hospital for a week, AND in all the many phone calls and e-mails they have answered for us since surgery. You have to have a great team to get through this!

    My daughter went to a follow-up last week and was cleared for soccer this spring! She starts conditioning workouts this week and is pretty happy. She had also lost quite a bit of weight after surgery (I think the painkillers just kill the appetite, too), but has gained back 10 pounds so her doc and nurse were very happy with her.

    Hang in there. I know that the waiting is just awful. I wish I could transfer some of my calm feelings to you! No doubt this is MAJOR and you need a great team of medical professionals, family and friends to get through it, but you CAN do it and your son will have his best chance at a pain-free life. I was completely frightened at the prospect that my daughter's back would only get worse . . .
    Jill, mom to 14-year-old daughter who had spinal fusion surgery (T3 to L1) June 21, 2010. (Pre-op curves 52T and 30L.)

  10. #10
    Join Date
    Nov 2010
    Location
    Spring, TX
    Posts
    29
    Our Neuro surgeon, Dr. Dauser, is AMAZING. We've been with him from the very beginning and I completely trust him. When my son was a cute chubby toddler and had surgeries his neuro surgeon would go to him first and do all kinds of karate chops and kicks and would have my son laughing. All the other docs would go straight to the parents and talk then leave. Not Dauser, he was all about Alex then came to talk to us and even then he had his eyes on him goofing around. I really hope he can be there for this surgery.

    Jill-thanks for helping me feel as if I made the right decision changing his ortho. I was afraid I was being paranoid, and I had been told it was my nerves and the fact that they weren't responding when I wanted a response. I just didn't get much of anything from their office, answers, manners....so I'm glad I am not crazy....at least not completely.

    I'm a little worried about the weight loss after surgery. Since he's grown so much lately and has lost his appetite (I guess with the growing spurt) he's pretty thin. Just this week in gym they checked their height and weight....the boy has grown AGAIN!! He is now 5'5" and 130 lbs. One of my very recent posts said he was 5'3....now 5'5...I can't tell you the fear I felt in hearing that. He told me because I mentioned to him how long his legs looked (torso is noticeably short compared to length of legs) and he told me what his new height was in gym. AND, that stinkin' gym coach!! He was told by a kid that my son was a monster on the football field and he should have seen him play, coach asked my son (showed lots of interest) who he played with, what position....blah, blah, blah. Then my son told him he wasn't playing anymore because doc told him no more....that toot said "OH, you're the kid with the back issues." And turned away. My son wasn't really bothered by it (it's hard to get under his skin) he just laughed and said "These coaches don't care about you unless you play for them". Too bad it's much easier to get under momma's skin when it comes to the kiddos.

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