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Benicus
22nd February 2008, 04:56 AM
Hello all, I just found your neat and nice little forum here and it has been very informative/cool! I thought I'd give my own tale and gather some feedback/experience from you people and see whats up!

So here's the scoop; I'm a 16 year old male livin' in Utah and I was recently diagnosed with Schuermans (sp?) disease about three months ago. I have been living with a hunchback for about three years with it getting progressively worse over time and I only really took any notice of it since last year because of being mocked because of it. I have seen a doctor regularly since birth and have had a physical since I was 13 but no one told me I had anything wrong with my back. Then I went to see a specialist (due to cosmetic reasons).

He told me I had Schuermans and that I had a kyphosis of 45 degrees and a minor scoliosis of about 7 degrees and that it would require surgery to fix (and he was a bone specialist not a spine specialist). I was scared sh!tless. That was about a month ago, and he referred me to another specialist (a spine specialist) at Shriners Childrens Hospital whom I saw today. He said the degree of my curve was 75 (kyphosis, scoliosis 7 degres) and that since I am about done growing bracing would be ineffective and surgery was my only option to fix this. We're going to follow up in about three months. He also said that some risks involved in the surgery are stiffness and possibly paralysis of my lower extremities. Holy sh!t!

I have the choice of getting the surgery or not and right now I'm leaning toward getting it because of cosmetic reasons and pain (not excruciating but not fun either) but I wanted to get some feedback and see what other people have done and are doing with my same condition. Is the stiffness that bad? I've read that some people aren't able to move their back at all except for at the hips! Anything you guys would be caring enough to share?

Amazed Jean
22nd February 2008, 05:31 AM
Hello and welcome to SSO. Of course you are scared and of course you don't like how your back looks. I have never had any bracing or surgery or other treatment for my very pronounced scoliosis and hump back. Yes I HATE what people say about my back and I can tell you that it still hurts today when some dolt says something stupid. I try to think,"Well at least my problem is physical while their is mental." It helps but it doesn't make it go away. I think you need to know that scoliosis continues to worsen. There are no two casses exactly alike. AND that you and your parents need to be the most informed that you can be and you have to be ready to take complete responsibility for your health. Stick with us we will try to help.

mark
22nd February 2008, 08:59 AM
First of all welcom to the site and i am sorry for the reasons that have brought you here. I can relate to everything that you are saying. THe risks for kyphosis surgery are a little greater than that for scoliosis however having said that with advances in technologies these are still slim but non the less do exist. Have a read of some of the surgery story threads by Phil, Zerodegress, Andy d and some others and you should get some idea of whats in store should you opt for surgery

Good luck with whatever decison you make

We are here to help, support and guide you through so don't feel alone. Whatever questions you have we will do our best to answer them

Welcome to our wonky world

Mark

Benicus
23rd February 2008, 05:33 PM
Thanks for the replies guys :)

Like I've said I've been really nervous about all of this though your site and stories have made me feel a little bit more at easy so, thanks!

With the surgery though, I know you get rods hooked to your spine (ouch!) but can you bend/move normally with them? How long is the recovery time? Can you play contact sports (I'm an avid wrestler at my high school :) )? I know these seem pretty basic but I didn't think to ask them at the time with my doctor, I was a little freaked out and not thinking straight.

Pics of my spine!

Here's me from the side from last summer.
http://i80.photobucket.com/albums/j199/Benicus/IMAG0005.jpg
A current xray of my kyphosis.
http://i80.photobucket.com/albums/j199/Benicus/kyphosis.jpg
And my scoliosis.
http://i80.photobucket.com/albums/j199/Benicus/scoliosis.jpg
:)

Simon
23rd February 2008, 07:54 PM
Hiya mate and welcome to sso

First off thanks for sharing your pics have you seen the kphosis gallery there is a few pics of a few of us

If you need any questions answered we will be happy to help you

GillyG
24th February 2008, 12:53 PM
Hi there :welcome:

I'm very glad you found us as there are quite a few members here with kyphosis (Mark and Simon, who you've already 'met' :-) ) who will be ablr to answer your questions and we'll all suppoert you as best we can, whatever decision you make with regards to surgery.

With regards to the question you asked about bending - the area of your spine where the rods are attached is actually fused into one long bone, so you would no longer be able to bend that part of your back. However, you do find ways to adapt. My spine is fused from T5 to L5 (which is from half way down the thoracic spine, just below the shoulder blades, to the very bottom of my lumbar spine) and yet I can still bend over to pick things up etc. Apparently, I now acheive this by bending from the hips rather than the back, but to be honest I can't tell any difference :D

Recovery time depends on many factors - the age of the patient, how many levels are fused, whether there are any other medical issues, etc etc and tends to be a little longer for kyphosis surgery than scoliosis, but once your spine is properly fused (which usually takes around a year), most activities can be resumed without problem. Many of the more gentle activities (walking, swimming etc) are actively encouraged much earlier than this as they help to build the core stability muscles wich in turn help to support your spine.

Hope this helps. Please feel free to ask any questions you like, but also have a read at other peoples threads as you will pick up loads of information that way - even answering some questions you had never thought of!

Gilly xx

jamielynn
24th February 2008, 11:08 PM
Hi, and welcome to SSO!
I hope that you find all of your questions quickly answered on this site

Little Ali
25th February 2008, 11:32 PM
Hey there

:wave: Welcome to the forum! I hope you like it here.

Thanks for sharing your pics!

Kentish
27th February 2008, 02:31 AM
Hello and welcome to SSO.

I had my spinal fusion for kyphoscoliosis back in 2001 and I've never regretted having it done. Dont let stories on here about the pain people have to go through after surgery scare you too much. Remember, because its quite a serious operation, you'll be given plenty of pain medication so a few months/years afterwards, your memory will be really hazy.

As for stiffness, I dont remember now what life was like before the fusion (well other than the pain) so to me, my spine feels just how it should do.

Anyway good luck with your surgery if its something you decide to do.