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  #1  
Old 19th March 2012, 07:28 PM
AliciaOConnor AliciaOConnor is offline
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Default Kyphosis with my 10 year old son.

Hello all,
I am new here and am looking for some help in our very big decision.
My son is 10 years old and will be 11 in June. He has Microcephaly, developmental delay, complex partial seizure disorder, Kyphosis and scoliosis. He is also having an issue with his heart rate dropping at night and we are not quite sure why.
We met with pediatric orthopedic doctor on Friday and he is recommending spinal fusion for my son. My sons back is curving a lot faster then he ever expected. There is also the option of a brace but he says my son would have to be in the brace for 6 years and that there is still the possibility of having to do the surgery after the brace. The brace would have to go all the way to his chin.
What is your experience with Kyphosis and spinal surgery or the brace. I am trying so hard to make the best decision for my son, but as you probably all know this is quite difficult and scary.
Thank you all!!!
Alicia
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Old 19th March 2012, 07:44 PM
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Duffer Duffer is offline
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Default Re: Kyphosis with my 10 year old son.

Hi, I had kyphosis and scoliosis. I had surgery a few months ago to stop progression. I was too late for a brace as I'd stopped growing.
I know it's very scary, especially as you're only finding out about it. I didn't get surgery for a while and so had lots of time to get used to the idea.
I am glad I had surgery even if I am a bit limited with some things now, I know it was the right decision. I hope everything works out for your son!
Juliette
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Juliette, had two surgeries in 2011 age 16, and also a rare complication called Wilkies Syndrome. Currently on the road to recovery and hoping to someday even touch my toes!
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Old 19th March 2012, 09:01 PM
AliciaOConnor AliciaOConnor is offline
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Default Re: Kyphosis with my 10 year old son.

Thank you so much for your response. I hope you are feeling well and getting back into the daily swing of things. This is such a hard decision to make fro my son but at the same time I know that it has to be done. I have been researching a lot and I am still a little iffy on the surgery, even it seems like the best option.
Alicia
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Old 19th March 2012, 09:07 PM
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tiffany.m tiffany.m is offline
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Default Re: Kyphosis with my 10 year old son.

Hi Alicia,
I don't have a great deal of experience, but all I can say is, you want to get it sorted whilst you can, whilst he's young and it won't interfere hugely with important school years and it sounds like with your surgeon's perception of his progression, he will need the surgery at some point. Ask someone like Mark - you don't want to be leaving it.
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I'm Tiff, I'm 17, my consultant's Mr Gibson at RNOH Stanmore and I was diagnosed in November 2011 and I had my spinal fusion October 3rd 2012 and am now fused T2-T11 with amazing correction (60T/40L to 30T/40L).
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Old 19th March 2012, 09:37 PM
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Duffer Duffer is offline
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Default Re: Kyphosis with my 10 year old son.

Thank you! I'm doing really well. If he is progressing quickly then surgery seems likely. I completely understand. My parents were the same, my mum always said she wished she could have had the surgery for me. If surgery turns out to be the best option then find a surgeon that you are comfortable with, and try find people who have also had that surgeon. Once you're confident in them it makes all the difference!
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Juliette, had two surgeries in 2011 age 16, and also a rare complication called Wilkies Syndrome. Currently on the road to recovery and hoping to someday even touch my toes!
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Old 20th March 2012, 09:44 PM
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JENNY14 JENNY14 is offline
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Default Re: Kyphosis with my 10 year old son.

I have a 90 degree kyphotic curve. I didn't have to wear a brace because it was spotted too close to when I was going to stop growing. But, bracing your son might be the best thing to do at the moment. Who knows, the brace could work very well and not make him not have the surgery. But because it wasn't spotted earlier, they couldn't brace me, and therefore, they will be doing a spinal fusion this summer. So, it's good they saw it early on----
Hope everything works out well!!
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Diagnosed with a 75 degree Scheuermann's kyphosis curve in 2010. After numerous doctor visits and a few years later, my curve had developed into one measuring 95 degrees. I had my spinal fusion done June 21, 2012 at the Children's Hospital of Georgia by Norman Chutkan in Augusta, GA.I'm now fused from T5 to L3.
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Old 20th March 2012, 10:34 PM
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moneyblind moneyblind is offline
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Default Re: Kyphosis with my 10 year old son.

Quote:
Originally Posted by JENNY14 View Post
I have a 90 degree kyphotic curve. I didn't have to wear a brace because it was spotted too close to when I was going to stop growing. But, bracing your son might be the best thing to do at the moment. Who knows, the brace could work very well and not make him not have the surgery. But because it wasn't spotted earlier, they couldn't brace me, and therefore, they will be doing a spinal fusion this summer. So, it's good they saw it early on----
Hope everything works out well!!
I have my reservations and ideas about bracing, I am really hardpressed to see an incident where bracing is actually effective (Granted, people only complain and speak out if something doesnt work) Being braced for 6-9 years seems like a very hard pressed idea, but so does surgery. I understand the position the parent is in, and I am sympathetic!

Alicia, you have my support either way, and who knows, maybe I might end up on a mission up that way.
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