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Thread: Needing surgery this summer-lots of ???

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  1. #1
    Join Date
    Apr 2009
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    6

    Needing surgery this summer-lots of ???

    My son who is 12 yrs old will need scoliosis surgery this summer. His curve is >50, and the fusion will be from T3-L1.
    I have questions about long term effects of the surgery- has anyone needed revisions? What about the hardware- the rods or screws holding the brace failing thus needing further surgery? Has anyone had more pain long-term after the surgery? How about flexability- has it been impaired?
    Any comments from those who have had this done will greatly aleviate my fears. Thank you.

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,104
    Hi...

    You may want to post to the Parents forums, which can be found here:

    http://www.scoliosis.org/forum/forumdisplay.php?f=101

    Regards,
    Linda

  3. #3
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Hi and welcome!

    My daughter had surgery when she was 13 y.o. She will be 18 y.o. this summer. Jamie is fused from T3-L2 with two rods, several hooks and wires, but no screws. She is a painfree, active teenager who hasn't regretted her surgery for one second. She does have slight problems with flexibillity, but it is mostly caused by her tight hamstrings and not necessarily caused by her back.

    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.

  4. #4
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,280
    Hi. I'll try to answer your questions but only have the experience of one kid who went through this. My point is that you should read as many other testimonials as possible as the variation in the surgery and recovery is huge.

    Quote Originally Posted by Basketballboy View Post
    My son who is 12 yrs old will need scoliosis surgery this summer. His curve is >50, and the fusion will be from T3-L1.
    I have questions about long term effects of the surgery- has anyone needed revisions?
    While revisions were sometimes necessary with the old hardware, I am told the new hardware is "one-stop shopping" for many kids. In other words, revisions are not envisioned as ever being needed similar to a broken bone being set not needing revision.

    What about the hardware- the rods or screws holding the brace failing thus needing further surgery?
    The hardware and techniques are so good these days that ~95% of kids need no physical restrictions whatsoever and still get a good fusion. Our surgeon restricts all kids from certain activities for 8 months because he doesn't know ahead of time who the 5% are who need the restrictions to get a good fusion. Some prominent surgeons don't restrict kids at all for any amount of time and play the odds.

    Has anyone had more pain long-term after the surgery?
    I am unaware of any testimonial for kid who had more pain long-term other than the one or two testimonials on another forum of kids who developed regional pain syndrome. But even then, it was treated as far as I know.

    How about flexability- has it been impaired?
    Not likely with your child's fusion ending at L1. My kid's fusion also ended at L1 and she can't tell a difference in flexibility or bending pre- and post-surgery.

    Any comments from those who have had this done will greatly alleviate my fears. Thank you.
    This surgery put my daughter back in the general population on risk for all future back issues (that is, she is not predisposed over an unfused person to any future back problems) and she was back in school full time at ~3.5 weeks. How's that?
    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."

  5. #5
    Join Date
    Apr 2009
    Posts
    3

    CarlyG

    Hi I'm a 12 year old girl who had spinal fusion surgery in November 2008. I had double curves, 70 degrees lumbar and 64 degrees thorax. I was fused from T4-L4. Yes my flexibility is less but I have learned to bend from my hips. I really thought it would be worse but it turned out great and I'm completely happy with my results.

    I think that after your son's surgery he will have more flexibility because it will not be fused as far as mine. I wish him well with his surgery.

  6. #6
    Join Date
    Jan 2006
    Location
    Tasmania
    Posts
    259
    Carly, just had to comment. Good on you sweety, so proud of you, and a very good post you wrote as well. You are right, I learnt to bend from the hips too and it was really great to read that you are already doing that.

    Macky xx
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  7. #7
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Welcome.

    The only concern I have about fusing a 12yr old boy is future growth of the spine. This could (in some cases) create a problem when the unfused parts of the spine are trying to grow, while the fused part is immobile. I would be asking a LOT of questions of the surgeon to make sure this is the right answer, at the right time for him.

    Good luck.
    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/

  8. #8
    Join Date
    Oct 2007
    Posts
    2
    I am 23 years post surgery in June this year – I had a full thoracic fusion (can’t remember the numbers – scar goes from base of my neck to base of my back) done for 60+% curve. I had a Harrington fusion with no compression rod – which means I have a single rod and 3 bits of wire (looks SO dodgy on an x-ray) when was 13 years old.


    • No revision surgery required – didn’t even know that sort thing could be needed until I joined this forum after my final clearance.
    • Hardware still hanging in there – and I've not limited my activity in anyway
    • No long term pain – I actually was fortunate to have no pain pre surgery and barely any during surgery
    • There has been a loss of flexibility – couldn’t not be - my entire rib cage is fused – that said I find it has little effect on me –sit ups I find uncomfortable (but I never liked them much anyway) and have difficulty with a few positions in Pilates but that said I’m compete in dance competitions days and haven’t found it limits me – my lower back has become very strong in compensation.


    One bit of advice to your son – don’t lean against cold walls – the cold not only gets into your body but into the metal hardware – then your body warms up quicker than the metal – and you get this weird sensation of being able to feel the implants inside you – very funky – not something I’ve chosen to repeat LOL

    hope that helps

  9. #9
    Join Date
    Sep 2007
    Posts
    338
    My son was fused at age 13 in November 2008. He had a larger curve and longer fusion than your son will have(T2-L4; rods and screws with a few hooks). No pain before surgery, and less than expected afterwards. Although all children are different, he was taking zero medication for pain 2 weeks post-op and was back in school at 4 weeks post-op.

    He is still limited in his activities (no lifting more than 5 lb., no bending more than 45 degrees), and we expect many restrictions to be lifted next week when he goes to his 6-month follow-up. His surgeon told us that even with such a long fusion he has a 15% lifetime chance of a second surgery, and that includes disc problems below the fusion.

    Carmell has a point about fusing at 12 years old. I was also concerned. However, it's a fine line to walk. In the two months before his surgery, my son's curve increased nearly 20 degrees to 76 degrees, and more of his spine needed to be fused than originally planned. If I'd had a crystal ball, we likely would have have pushed to have it done sooner.

    However, he is now doing very well. He walks a lot--up to 5 miles a day--and feels good. He's anxious to be able to do more. I think your son will have much less concern about flexibility with a shorter fusion.

    You're in a great place to get answers, so ask away!

  10. #10
    Join Date
    Feb 2008
    Posts
    42
    I had this surgery at 13 yrs of age in May and I couldnt be happier. I no that I am fused from just below my neck to just above my hips and I am happy to say that I will be one year post op on May 21st!!!! I can already run for 9 minutes without stopping and just had to report that cuz im so happy about it lol. Flexibility has always been a problem for me bacause of tight hamstrings but im slowly getting it back. I have 4 rods and several screws with (my fave) one hook at the top of my fusion. I had a rib hump but now i can barely notice it. My hips were also very uneven and unfortunatly they still are pretty uneven but im very happy with were i am with no pain. I dont remember very much pain throughout the whole experience.

    I feel blessed for my successful experience and what a fast 3 yrs this has been with being diagnosed in the summer of 06.
    I wish you luck in your journey and hope your son will also have no regrets as i do
    I'm 19 years old, had surgery 5 years ago
    3 curves Middle curve - 65 fused to 13 Bottom curve 35- fixed on it's own to 16!
    Fused from C7 to L1

  11. #11
    Join Date
    Apr 2009
    Posts
    6
    Thanks to all of you who have replied. My son's surgery is now May 20th and he is very ready for it, I'm the one who is a wreck with worry that we are doing the right thing. I really appreciate the comments about the post op discomfort not being as bad as I am imagining.
    Since the surgery is in several weeks - what home preparations did you have to make. We live in a two story house with his bedroom /main bath upstairs.
    What types of clothes were most comfortable? Did anyone lose alot of weight?

  12. #12
    Join Date
    Jun 2008
    Location
    Oregon
    Posts
    18

    Hey!

    I am 14 years old (going on 15) and I had surgery last summer. Kids heal A LOT faster than adults do, trust me. My surgery was August 14th and my doc said I wouldn't be able to go to school, but I healed faster than he expected, and got to go to school. Sleeping is the hardest part after surgery, at least for me it was. You cant really roll, and if you want to get up to go to the bathroom in the middle of the night, than you need help. My parents just gave me a cellphone and kept their phone by their bed, so that I could call them if I needed help. The rods and stuff you shouldn't be able to feel, but there is a slight change in flexibility. It has been about 9 months for me, so I can't entirely say it gets better yet. As far as back pain goes, after a few months I think it feels better than before the surgery. So I hope that I could help, and if you or your son has a question, feel free to private message me.

  13. #13
    Join Date
    Apr 2009
    Posts
    12

    on coming home from the hospital

    Hi,
    From everyone's posts it seems safe to asume that when my 18 year old comes home from the hospital he will be able to:

    go up and down stairs

    get a t-shirt on and off

    use the bathroom

    What things will he need the most help with ?

    will he be able to get up out of a chair?

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