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Thread: 15 year old son just diagnosed with 57 degree curve facing surgery

  1. #1
    Join Date
    Mar 2005
    Location
    washington state
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    4

    15 year old son just diagnosed with 57 degree curve facing surgery

    Hello,
    I just wanted to hear some feedback on your childrens stories about what they are going through with dealing with Scoliosis. Emotional problems, recovery and progression of this disease. My son has grown 9 inches since September and this is a fast progressing case. I find it hard to believe that with a case progressing this fast that it takes so long to get into a surgeon that specialises in this field. We live in Washington State and as far as I know there is only one doctor that will deal with this situation. His name is Dr. Song, he is out of Bellevue and also works with Childrens hospital. I would like to hear what it will be like with his recovery from someone who has witnessed it firsthand, rather then from the doctor. And is it really true that they actually have to break his back in order to fix the curve.

    Thank you,
    Crystal

  2. #2
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
    Posts
    299
    Hi

    Sorry to hear your son's curve's progressing fast, and he's facing surgery :-(.

    If you look through some of the recent posts by nikerygen, Susanna, Mary Lou and jc3 you'll find lots of really good stuff on before surgery, the surgery experience, and their child's recovery so far.

    As far as I'm aware (have to say aware, some of the techniques done in America aren't available in Australia), in no type of scoliosis spinal fusion; do they have to break the spine to fix the curve. On occassions (often when Anterior and Posterior fusions are done together) they'll take some disks out to gain better manipulation of the spine. Often more than not, they are able to manipulate the spine enough by "hand", when you are on the table to get the desired correction, without needing to take disks out.

    They then fuse the spine with mixtures (depending what instrumentaion used) of rods, hooks, screws or bars. And then put "shaved bone" over the top to graft it, either from a cadavar source, or from the patients own body.

    Best wishes

    Alison

  3. #3
    Join Date
    Jun 2004
    Posts
    55

    Dr Song

    Hi Crystal,

    My son is 8 yrs old, and had surgery 2x last fall from Dr Song. He is an awesome surgeon... his skills are excellent and I would not hesitate to reccomend him most highly. My son is quite complicated (these were his 6th and 7th spinal surgeries... the others were done in our home area in Idaho) and he took the time and trouble to take the xrays to more than one conference to get other opinions on what could be done to help him. Then when he finally had an answer, within a few weeks we were brought to Seattle to begin the process of halo traction (he had to have his old hardware removed, had his head placed in a halo and then had 25 pounds of weight helping to straighten his upper kyphotic curve for 2 months prior to his eventual re-fusion).

    Sean's curve was 65 degrees when first discovered at age 2, eventually prior to his first fusion at age 5 (he had grow rods inbetween these 2 ages) his curve was close to 100 degrees WITH the rods in place.. expected that had he not had the rods the curve would have been clower to 130-140 degrees... so I do understand rapid curve growth. Have you seen Dr Song yet, and if so, when will the surgery be?

    Holler if I can answer any questions for you... we are headed out to see Dr Song early April.

    Heidi
    Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

  4. #4
    Join Date
    Feb 2004
    Location
    New Zealand
    Posts
    108
    Hey there Crystal:

    If you want to talk directly to scoli kids, you can get yourselves over to www.spinekids.com. It's a very active site, filled with scoli teenagers, all talking about the experience of having scoli, and of bracing and surgery (and also their favourite movies, their favourite bands, their recent sporting successes, whether Johnny Depp is a more major babe than Orlando Bloom, and so forth). Scoli is mostly a girl's condition, as you probably know, so there are only a few boys over there, and they consequently get heaps of attention from the girls. If I were a teenage boy, I think I'd like it a lot.

    Surgery is scary, that's for sure. My own super precious and extremely important to the history of the world daughter (me, biased?) is scheduled for hers on 2nd May, and it's causing a lot of anxiety around our house. However, when we look at it realistically, this is a well-understood medical procedure. If you're being treated by an experienced surgeon, your chances are very high of an outcome that effectively constitutes a cure. A friend of mine has a daughter with epilepsy, and he says he'd give anything for there to be an operation she could have....

    My understanding is that they don't actually break the spine to fuse it. It's more that they "rough up the surface", to cause the body to generate new bone growth resulting in a solid column of bone, rather than the individual segmented vertebrae of the unfused spine. The hardware serves to hold the spine while the fusion takes place. (Before the development of the hardware, scoli patients used to have to stay immobilised in bed for many months after the operation. Some people on this forum went through that. Now they're up and walking around in two or three days. Remarkable.)

    There's lots of information available, on the web and in books, about the actual procedure. Perhaps the more you know, the happier you'll feel. (Watch out for some of the stuff on the web though, especially where it involves you paying for things. Some people are out there promising miracles they can't deliver...)


    As for the delay in getting your child to a specialist, you probably don't need to worry too much about that. Curves progress most during the adolescent growth spurt. Since your son has grown 9 inches in six months (yowsa -- that's a lot of new pairs of jeans, I reckon) and is 15, he's probably done his dash. Progression after the growth spurt is generally much slower. You'll read posts here of adults whose curves progress at rates like only 1 degree a year. There's an Irish girl whom you'll meet on Spinekids who wasn't diagnosed until after she finished growing. This was about a year ago. Although she has two 80 degree curves, she won't be getting her operation until next January. The damage has really been done, so there's no need to panic now.

    Hang in there, and keep in touch.

    Patricia
    Scoli Mum from New Zealand

  5. #5
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
    Posts
    299
    I was thinking a bit more and if they did have to break the spine in fusion surgery, we'd be flat on our backs for a lot longer. We'd be flat for at least 6 weeks; luckily they don't (break it) 'cause we're up and about within 3 to 5 days of surgery, which is one of those marvels of modern medicine

    Alison

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi...

    There is an experimental procedure for correcting scoliosis that involves vertebral body osteotomies, which would be like breaking the spine. You can read about the procedure here:

    http://www.spinejournal.com/pt/re/spine/abstract.00007632-200310151-00025.htm;jsessionid=CDtnT1OHQV7P0NN9EUV2QCmrSEK71 oJ2WRmEr3ruyiBTlPzXHyj7!405497312!-949856031!9001!-1

    Regards,
    Linda

  7. #7
    Join Date
    Mar 2005
    Location
    washington state
    Posts
    4
    Thank you all for replying. The breaking of the back statement accually came from an orthopedic surgeon who first reviewed Andys xrays. I think that the more I research this subject the more I have come to understand it. Though some sites state that it is the worst thing to have done to your body. I would like to understand though some of the "other" problems that can occur that the doctors don't want to tell anyone. No one knows more then someone who actually has had this done to them. I hope for the best for all of you that have gone through this and am open to any information that you would like to share.
    Crystal

  8. #8
    Mary Lou Guest
    Hi Crystal,

    You've come to the right place for information. As you read our threads, you should be able to find whatever you are looking for. We share the ups and downs and the good and the bad.

    My 13 y.o. daughter had spinal fusion almost four months ago. If you have any questions, feel free to ask either here on the forum or by e-mail. Like someone else said, there are several threads where we've been discussing our children's surgeries and recovery. Linda mentioned to you about "osteotomies". My daughter had this done. Most people have a thorascopy (sp?) and/or ribs removed during their surgery. Jamie didn't have either and she had surgery to correct both Scoliosis and Kyphosis.



    Mary Lou

  9. #9
    Join Date
    Jan 2005
    Location
    Washington State
    Posts
    43
    Hi Crystal, my son had a posterior spinal fusion done by Dr. Song 12 days ago! He is a fabulous DR! My son is doing GREAT! Childrens is a great hospital and I am so happy to have had this surgery available for my son! We live on the eastside and Id love to chat more if youd like to!
    SARAH ~Mother of 3~ 11 year old son had a Posterior Spinal Fusion on March 17, 2005. He had a 77*, right thoracic curve, and was fused T4-L1. His curve is now less than 10 degrees* He is doing great!

  10. #10
    Join Date
    Mar 2005
    Location
    washington state
    Posts
    4
    Quote Originally Posted by SarahH
    Hi Crystal, my son had a posterior spinal fusion done by Dr. Song 12 days ago! He is a fabulous DR! My son is doing GREAT! Childrens is a great hospital and I am so happy to have had this surgery available for my son! We live on the eastside and Id love to chat more if youd like to!
    Sarah,
    That is great to hear. How long did your son stay in the hospital and how long after Dr. Song first saw your son did he have to have the surgery? You may email me....TheRacingAngel@aol.com. I would love to chat with you, as you well know I am very nervous about having to watch my son go through this.
    Crystal

  11. #11
    Join Date
    Mar 2005
    Location
    washington state
    Posts
    4
    Quote Originally Posted by SarahH
    Hi Crystal, my son had a posterior spinal fusion done by Dr. Song 12 days ago! He is a fabulous DR! My son is doing GREAT! Childrens is a great hospital and I am so happy to have had this surgery available for my son! We live on the eastside and Id love to chat more if youd like to!
    Sarah,

    Sorry but wanted to tell you that I live in Arlington, north of Seattle

    Crystal

  12. #12
    Join Date
    Jan 2005
    Location
    Washington State
    Posts
    43
    Crystal, we live in Bothell and I am very familiar with the Arlington area. Id love to chat. I saved your email and will write to you int he next couple days. Our email is hudkins.fam@verizon.net I'd love to help support you and your son through this time! Hugs to you! I am glad we connected!
    SARAH ~Mother of 3~ 11 year old son had a Posterior Spinal Fusion on March 17, 2005. He had a 77*, right thoracic curve, and was fused T4-L1. His curve is now less than 10 degrees* He is doing great!

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