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28th June 2006, 02:34 PM
My daughter was diagonsed with scoliosis and kyphosis when she was 1. She had surgery for her scoliosis with fushion and a rod when she was almost 3. All went well and she was straighening beautifully. She is now 5. We just went back for our yearly checkup and her kyphosis is much worse. Her surgeon said she needs another surgery for the Kyphosis. When he was telling us this time, it much different from the first. The severity of this surgery is huge. There will be lots of blood loss, hospitalized for 2 weeks, and wearing a halo for 3 months. I am scarred to death. There is not a lot of info on kyphosis or this type of surgery on the web. I am hoping someone here knows anything at all about what we are going through.
29th June 2006, 12:09 PM
Hi ermoto, good to hear that your daughters scoliosis surgery went well and im sure the kyphrosis surgery will too. I dont have kyphrosis so cant really help you with the surgery, but if you go into the next forum, its all about kyphrosis and flatback, and there are loads of people there that will be able to help you.
Good luk once again, and welcome to SSo.
29th June 2006, 02:37 PM
Did Dr. Emans say what kind of surgery your daughter will be having for her kyphosis ? Will it be further fusion surgery or the Veptr ? I'm surprised he used instrumentation when he did the initial surgery but I guess the degree of curvature combined with the kyphosis was very large ? I've read that fusion with instrumentation on very young children leads to many complications.
Many many children have survived the halo. It does look barbaric and something out of a Frankenstein movie but it is necessary and you won't regret it later when you see what kind of correction your daughter will get with the halo.
29th June 2006, 03:33 PM
We had our appointment last week. Dr. Emans said that he wanted more time to compare the CT's and he was going to cantact us this coming Monday with exactly what he wanted to do. He gave us an idea of what to expect, but no specifics yet. All we know is he will be going in through the front and back, there will be a rod on either side of her spine and that recovery will be hard and long and that she will need a halo for 3 months. When he did the original surgery, it was for the scoli. The kyphosis was not to bad. The scoli rod straightened what it should have, but compensated with the kyphosis. Next week I will post what we hear back from him. Are there any questions that you can think to ask the dr that I might not have thought of. Thank you so much
29th June 2006, 04:57 PM
It's hard to say what his plans are....if he's going through the front and back, it could be further A/P fusion surgey. I've read that the Veptr does not address kyphosis very well. Will your daughter go into halo traction for three months before the major surgery ? It may still be the Veptr - some children have had halo traction for a period of months prior to the Vetpr to correct their kyphosis.
How many vertebrae are currently fused ? What kind of congenital scoliosis did she have ? Has Dr. Emans indicated how this will affect her eventual torso size. I would be concerned if he's planning further fusion. Maybe he is planning to break up the existing fusion, put her in halo for three months to correct the kyphosis and then fuse the vertebrae at a later date???? That would explain the major blood loss. It's all speculation at this point. Unfortunately doctors have not perfected surgery for infants/young children. What ends up happening is one surgery leads to another and yet another.... sort of like damage control. :-(
25th July 2006, 06:30 PM
Erin, we have no personal feedback from wearing a Halo device but I do know a mom on a Congenital Scoliosis group whose son did wear one... she may be able to offer some support/advice... You can email me at conni60640 and I can put you in contact with her :) Good luck, I know many people who use Dr. Emans and love him!
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