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10th September 2005, 07:41 PM
Hi. I am new to this board and my five year old son Billy has congenital scoliosis. He has only half his sacrum, which means the left half of his pelvis connects to about the L5 section of his lumbar spine and he also has an extra hemivertebrae there. Because of this, his pelvis is tilted (right side is connected normally to sacrum) and this has caused a 40 degree scoliosis to balance his body out.

Thankfully, his scoliosis seems stable, and the hemivertebrae is behaving itself nicely, so we don't seem headed for any surgery unless the situation changes.

Just wanted to introduce myself and say hi :D This seems like a great, supportive group!

10th September 2005, 08:53 PM
Hiya! :welcome2:

It's really great that Billy's scoliosis is stable at the moment, I hope it stays that way. Meanwhile, we have a wide membership here with a lot of experiences and knowledge between them, so hopefully we can help you out, and certainly we can always listen :-)

10th September 2005, 08:54 PM
Hi Conni and welcome :welcome2:
What a handsome little man you have there.He's the same age as my youngest! It's great that you're joining our group and hopefully you'll enjoy chatting with the rest of us.

Little Ali
10th September 2005, 11:32 PM
Hi Conni! :welcome2:

I agree...Billy is a cutie! I hope you find this group useful! We're not a bad lot really! :monkey:

11th September 2005, 12:08 AM
Hi Connie :welcome:

I recognize that cute little face from the VEPTR board :-D O.K. I admit it, I'm a peep. Billy has the sweetest expression - it's priceless.

11th September 2005, 12:54 AM
Welcome Connie! I've seen you at the CAST group I think, though I don't post there. I am 30 now and had infantile scoliosis so I like to see how today's kids are getting on :D Billy is SO gorgeous!


11th September 2005, 11:27 AM
Welcome Connie! We're getting quite a bunch of cuties on the site - nice to see you here. My daughter has infantile scoliosis and is currently in a brace to hold the curve, although she'll be going back into a cast soon :(

We're a varied group, both location wise and scoli wise, so if you have any questions, throw them our way and we'll do out best to help.


11th September 2005, 01:36 PM
Just wanted to say hello too, and this really is a lovely group. My son (3) has got a 30-40 deg curve which seems stable at the mo and everyone here has been fantasic answering my questions!



11th September 2005, 11:07 PM
Thanks for the welcome and well wishes everyone. And yes, I am a "groups" junkie and am either active or lurk on many groups for all of Billy's different issues. The more info the better is my motto :)

Tonibunny, I was amazed at your before and after surgery pics that I saw while browsing the forums, they did a great job! I haven't been on the CAST group site for a while now, since with congenital scoli it just isn't even an option. It was interesting for a bit though...

Andrea and Sealy, your little guys are cuties too!

12th September 2005, 08:40 PM
Welcome Connie amd Billly.
Nicola & Niamh

12th September 2005, 09:40 PM
:welcome: I hope you find it useful here and I agree Billy is such a cutie! :D

18th September 2005, 08:15 AM
Hi Connie, and welcome. Sorry I'm a bit late. It really sounds like Billy has had his share of problems, but you're absolutely right about his smile. He's such a cutie, and from looking at that picture, he's clearly well-adjusted and happy. Good mom!

About me: I'm 32 and a congenital scoliosis survivor. Or whatever. I had a fusion attempt at 10 months, but had a complication during that surgery (they did manage to repair a spina bifida before stopping, though). I had my first fusion at 11 months, and a repair of pseudoarthrosis at 17 months. I've been skeletally stable since, but my lung capacity is diminished, of course... somewhere around 25% of expected.

18th September 2005, 03:14 PM
Thanks for the welcome! Better late than never has ALWAYS been my motto, LOL... ;-)

Glad to hear that you have been skeletally stable since your surgeries, although that's pretty extreme for such a young child :( As you mention, not good for growth potential for lungs. If you don't mind my asking, how does it impact your daily living, if at all? Just curious, since I know many children who needed or will need this surgery done and you are one of the only adults I've "met" who went through it at that early age...

18th September 2005, 07:15 PM
Hey :welcome2: I hope u like it here, and find it useful! :D everyone is so nice, so you'll be ok ;-)


19th September 2005, 12:03 PM
I almost don't want to answer your questions for fear of scaring you...

As far as I know, I am still the youngest ever to undergo a thoracic spinal fusion. Your son is so much older and his lungs have already had much more development than I had when I had my fusion. Even if he had surgery today, he could expect a much better outcome. Besides, today there are alternatives that would delay fusion until he gains more torso length.

But since you asked, I'll admit that my daily activity is limited. I am fully ambulatory, of course. In fact, I went skiing in the Alps in late March--the altitude was problematic (we were staying at 1700 meters, and went up to 1900-2000 meters to ski). Even at sea level the exertion of skiing would have been a strain for me. But I managed it, and I had a good time in the process. It's not something I would do often, though.

So, yeah... I can walk, but it is a strain and I'll ride/drive or otherwise avoid walking if at all possible. I can run, but I almost never do (only in case of emergency). I can take the stairs, but if there's an elevator I'll find it (unless, of course, it's only one flight of stairs and the elevator is at the other end of the building). I spend a lot of my time assessing the physical workload involved in taking certain actions/routes, and then pursuing the least exerting approach.

Since I knew I could never rely on my physical abilities for work, I continued my education so I could get a cushy office job. However, after two years of dragging myself out of bed, working all day, then coming home and sitting around until it was time for bed again, I "retired". I resented the fact that all I did was work and sleep, and still had nothing to show for it.

Now I am "mommy" to my younger siblings and otherwise manage the household... grocery shopping, cooking, scheduling appointments for everybody, accompanying them to their appointments, etc.

Wow. I really am a mommy. When did that happen?