View Full Version : Congenital scoliosis
23rd August 2007, 08:15 PM
Hi all, Newbie here in need of advice....
I have identical twins... one of which has congenital scoliosis...amongst other things. We are due for an m.r.i. scan in preparation for an op on his lower curve (He has 's' type scoliosis) Was wondering if there was anyone with experience of surgery and what are the views of others about leaving surgery for a while...they want to do op when he turns 1 yo..... I feel awful for him as he's already had heart surgery at 10 weeks and is due for a hernia operation.....he's having so many G. A's for such a small boy with a heart condition ( he's only 12lb) I worry they're doing him harm instead of good. Any advice would be wonderful :???: .
Many thanx del :-?
23rd August 2007, 08:30 PM
Wow, how old are the boys now?
I have mitral valve prolapse with regurgitation, one kidney, and all the other stuff in my signature. I don't know which operation they're recommending for your son at 1 year, but if it's a fusion (unlikely), hold off as long as you can! They have less radical surgeries that they can offer now, VEPTR, etc, which offer stabilization of the spine without arresting his growth. If you're being offered non-fusion surgery, then take it. But unless his mobility or life are in jeopardy, do not be hasty about a fusion.
Regarding his heart condition, I know that in my case I was evaluated and the risks of surgery were carefully weighed against the need for it, both when I was an infant and toddler having my spinal operations, and more recently when I had a benign brain tumor, and then when I had my septum straightened. If his physicians determine that surgery is the next course of action, then they have done a careful examination of him, and they are sure that the potential benefits outweigh the risks.
I wish you and your children all the best. Feel free to send me a PM or ask questions here if you want to know more. I'm happy to share.
2nd September 2007, 09:58 AM
I agree with jfkimberley. I am 44 now and have never had any kind of treatment, including non-surgical, for my scoliosis. Its very severe now (s curve both 90 degrees!) but it doesn't bother me. I was offered surgery several times as a child but a very wise physio explained to my mum how many probelms there were when your body grew and the rods had to be changed etc. I could have had a fusion when I was 21 but became pregnant and it was put off. Then when my daughter was three we decided to try for surgery once more, but guess what? I discovered I was pregnant again!
With two small children to care for I decided the risks of losing mummy was too great, so I put it out of my mind, and I cant say I regret it (well maybe just a little, when I can't fit into the clothes I'd like). I now have grandchildren and am just finishing my degree at university (better late than never!).
Don't rush in to anything, don't be fooled into thinking drs always know best, there are some great ones out there but not all of them are, just as in any walks of life. Research and evaluate everything they suggest.Don't be afraid to tell them you want time to think about something (unless its an emergency of course)
Hope this helps
2nd September 2007, 12:11 PM
I heartily agree with my fellow SSOers . Every case is different and the best idea is to get at least one second opinion from a scoliosis specialist. It's always difficult to know what to do and sometimes you have to just go with mulling everything over and then use your gut feel. Get a notebook and write down everything you can that you want answers to and be sure to drag it with you to appointments. Note the answers too when you get them. By the time you get home I promise you won't remember it all. Just because records go missing easily I also reccommend that you get copies of everything (or photos) xrays, mri's etc. Sometimes it will save you another test . At any rate Welcome to SSO were are here to listen too.
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