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15th October 2005, 06:43 PM
Hi Im a new member.
I Ruth and my wee boy Robert was finally diagnosed with a idiopathic scoliosis when he was 4 years he now 7. Hes had 2 plaster braces on 2 boston braces and is waiting for his third one. His initial curve was 57 degrees and after the plaster braces went down to a 32 curve but since the use of the boston has gone back up to a 47 degree curve.
We were told last week that the surgeon will operate on him in the future. This has come as a total shock cos the original dr had told us bracing only would be required.
Both myself and his dad mark have found this new really upsetting and are having problems coming to terms with what is entailed with the surgery.
any info would be appriaciated.By the way were from scotland
15th October 2005, 07:01 PM
hiya i'm becky, you can read all about me in my signature
unfortunately i don't have experience in infantile/juvenile scoliosis directly but i'm friends with a family in my village whose youngest is 13 and one of his problems is scoliosis. he also happens to be treated by the same surgeon as me :D
i don't know that i can say much to reassure you but i'll try: surgery is a nightmare situation for a parent - your child is totally out of your hands, however if you've got a good surgeon who will look at children on a case by case basis and decide what is best for the individual then that's great. from what i hear, some children experience fluctuations in their curves as they grow, so your son's curve may go up and down a bit over time (i think mine did a bit too) surgery is a lot safer and more advanced than it used to be
i know he's only young but you haven't said how robert deals with it all...i also know there are two scottish members of the board who will be delighted to hear of another scot around.
there's a wealth of knowledge and experience on here and it's helped me no end. welcome to SSO and i hope that we can help you, even if it's just a virtual hug :squeeze:
15th October 2005, 07:59 PM
Hi Ruth, :welcome:
I have to agree with Becky, curves will fluctuate up and down with growth. Even though your son's curve is now 47 degrees, he started out with a 57 degree curve three years ago and hopefully there has been significant torso growth as well. Maybe the new brace will be able to bring the curve down even further. Your son may end up needing surgery at a later date - hopefully not. What kind of brace is he getting ? Is he doing any kind of physiotherapy ?
15th October 2005, 08:49 PM
Hi Ruth and welcome to sso. I had a 45 degree curve at his age and unfortunately ran to 110/120 degrees at age 15 when I had my surgery.The danger time for progressive curves in in the adolescant stage when they can move rapidly, so I won't kid you,there is a chance that your boy MAY need surgery in the future.
If it comes to a point where they feel surgery is required, allow them to fuse your boy's spine only as a last resort. Look into the procedure of having growing rods fitted instead into his spine which should allow him to grow significantly before final fusion.Is there any way you vould find your way to QMC in Nottingham.Just curious because we have an adult patient from Scotland who was referred there.
I would strongly advise a second opinion when it comes to infantile/juvenile scoliosis.if you can afford a private trip into England then maybe it's worth a shot.
I'm based in Ireland by the way.
16th October 2005, 12:25 AM
Hi Ruth & :welcome:
I'm so glad to see that you made it here!!
(I'm the culprit that gave you the link on the other scoliosis site ;-) ).
I have no background in how kids are treated, my scoliosis has never been treated even though it was diagnosed when I ws 8. However I did tell you that there was a few here who will understand exactly what you are going through and can give you all the guidence, help and peace of mind.
Hope you enjoy your stay here, and ask as many questions as you need to.
Between us all we will help you get the best possible care for Robert.
16th October 2005, 12:39 AM
I'm Toni and I had infantile idiopathic scoliosis myself - you can read about me in my signature :D I'm glad you've found us!
16th October 2005, 03:00 AM
Hi Ruth :wave: As soon as I saw that our newest member was called BoabsMum I knew you were Scottish. :D Where are you from? My name is Leona, I'm 29 and I'm from Dundee.
Unfortunately I won't really be able to help out with any words of wisdom for Robert as I was diagnosed when I was 18 and will never receive surgery as I have mild scoliosis but I just wanted to say hello to a fellow Scot. This is a wonderful site with friendly members, we think of ourselves as a family here. I hope you, Robert and Mark enjoy this site and find it helpful.
16th October 2005, 07:51 AM
Hi Ruth! Welcome welcome. Always room for more here.
16th October 2005, 05:23 PM
Hello welcome to the board, i'm fairly new here myself but i can tell you that the people on here are wonderful and extremly helpful.
17th October 2005, 09:34 PM
Hi Ruth and welcome to SSO. I'm Andrea and my 3 year old daughter has infantile scoliosis. She is currently in her 5th or 6th cast (i've lost count), although was in a brace for the summer when her curve also went up again. Not sure what it's at now. She'll be recasted in about 6 weeks.
I think I've always known surgery will be likely in the future, but its always something i'll worry about then, rather than now. I can imagine the shock that you are feeling now that they are looking at the options. Advances in surgery are happening all the time and they can do great things now. Have they told you what surgery they are recommending?
19th October 2005, 12:24 AM
Welcome to SSO Ruth :wave: I've been very late to welcome threads recently, and today is no exception, so there's nothing really left unsaid, but welcome to the family :-)
I'm 17 and had surgery for idiopathic scoliosis last summer and this March for 53 and 30 degree curves. I was put on the waiting list as soon as I was diagnosed, and braced while I was on it to hold the curve.
Actually, one thing - surgery is far from a definite, but even if it seems inevitable, the smaller the curve at the time the better. Correction of a 60 degree curve will always be better than correction of an 80 degree curve. I know, though, the feeling of "oh, who cares, I can't be bothered with the brace, he's going to have to have surgery anyway..." Don't fall into that trap! :squeeze:
19th October 2005, 02:52 AM
Hi Ruth and welcome again! I'm 32 with congenital scoliosis, and had thoracic fusion at 11 months. As mentioned, even though the prospect of surgery is a bit overwhelming, it will only be considered if it is in your son's best interests.
Toni and Becky, you've convinced me... I need to put my info into my signature line. *gets to work on that*
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