PDA

View Full Version : Post-op, new curve



Devorgilla
19th March 2007, 04:37 PM
Hi,

My son had an anterior instrumentation and fusion done 2 years ago at age 9, and we have just been told that what was the compensatory curve is now increasing, and we are likely to have to go back to a brace.

I have not told my son this as life over this last year has been so wonderful for him without braces and being able to do whatever he likes. I fell so depressed that we are going to be back to this - it breaks my heart to think how he will feel.

Has this been anyone else's experience and if so, what was the outcome? did the "new" curve keep increasing or did it settle down? we were told the likelihood of this occurring after the spinal fusion was small but of course, there's no guarantee it won't happen.

I would be so grateful to hear from other parents - I thought this journey was over! :-{

Dev

tonibunny
19th March 2007, 05:00 PM
Hi there Dev,

Welcome to SSO! :welcome2:

I'm sorry to hear about your son's curve increasing. Do you know what degree of curvature he has, and what sort of scoliosis he has - is it idiopathic (of no known cause) or congenital (where some of the vertebrae haven't formed properly), or caused by another condition? How long has he had scoliosis? Finally, where in the world are you, and where is your son treated?

Sorry for all the questions, but they'll help us to advise you :-)

I had a double idiopathic curve since I was a baby and had my first surgery when I was ten, but even though my lumbar curve was at 50 degrees they decided to just monitor it rather than putting me back in a brace, which I was very happy about! I finally had surgery on that curve when I was 18, and it only increased to 55 degrees by then.

Amazed Jean
19th March 2007, 05:24 PM
Devorgilla, Sorry to hear about your son's compensatory curve. But I wanted to log on and give you a big hug. Have a cup of tea. Pat yourself on the back for being a great Mom and doing all you can for your son's health. I know one of the most important things for anyone dealing with scoliosis is to ask questions, ask questions, and ask questions. Get a notebook,write them down, take it to appointments. At SSO we have learned that every case is different so someone is bound to be able to help you answer a few questions.

Devorgilla
19th March 2007, 08:50 PM
Thank you both for replying.

To answer the questions, my son's scoliosis is officially idiopathic but he has Fetal Alcohol Syndrome and Noonan's Syndrome, both of which are associated with scoliosis in childhood (as opposed to adolescence). Although we first noticed the curve at age 2, he did not begin treatment until he was braced at age 3 with a curvature of 27 degrees (he is very tiny, below the 3rd percentile, so the curve was more significant than otherwise) - even then our paed would not admit there was anything wrong, so I had to go over his head to get a referral (long story!) I'm not entirely sure what the second curve measures, but I think it was around 35 a couple of years ago. It was so much less than the other that I didn't really think about it much!

We go to Sick Kids in Toronto, where we have had a fantastic experience with the staff. Mikey was braced until age 9 when he finally had the surgery at 63 degrees. He continued in a brace for 6 months afterwards to ensure he would not damage his site (he is very hyperactive with a high pain tolerance) but since he is sports mad, his first year was a bit traumatic for all of us! He is now back to soccer and basketball, and he will just hate going back to a brace - I know we don't have to think about it just yet, but this poor little boy has so many issues he has to deal with, and sport is the one area where he shines, and it makes him so happy.

The surgeon who did the surgery is one of the top scoliosis docs in canada, so we were very lucky to get him. Sadly, he has now moved to another Province.

Sorry to sound so down, I am usually a pretty upbeat person, but I guess I was premature to think it was over.

For Tonibunny, what surgery did they do on your second curve? I was told that surgery for a second curve would not be possible in my son's case (this was after the last op) because so much of his upper back was already fused, that he would ahve no flexibility if they were to do the lower as well. Where was your first curve? His was between his shoulder blades.

Thanks again, and better than a cup of tea, I went out to lunch with friends!

Dev

tonibunny
19th March 2007, 09:24 PM
Hi Dev,

I'm really sorry to hear of your little boy's problems :( I know I'm lucky that I got away with "just" having idiopathic scoliosis!

I was first diagnosed as a baby with a double curve of about 62 (upper) and 40 (lower) degrees. My lower curve wasn't compensatory though, as it was there before I even sat upright. I was put straight into casts and then braces too as I got older. These held my curves and prevented them from progressing too much, but I finally had surgery when my top curve suddenly started to deteriorate quickly when I was ten. It had reached 76 degrees by then, and surgery corrected it down to 45 degrees.

The surgery I had when I was 18 was to extend my fusion to include my lumbar curve. I'm not sure where the apex of my thoracic curve was, but it was pretty high up, certainly between my shoulderblades if not higher. Because of this I had to wear Milwaukee braces as well as the plaster casts - I alternated between the two, with casts in the winter and braces in the summer. As a baby I apparently had plaster casts that came up high around my neck and head, but I don't remember those.

I'm now fused from T1 down to L4. I just have two vertebrae that still move, but I don't feel limited by this at all and can even bend over and touch my toes! My remaining discs are in good shape too. My x-rays are there in the gallery if you look. I have the old style of rod, the Harrington rod, which is no longer used.

Hope this helps! :-)

Toni xx