1 reply to this topic

[Lyndal NZ]

Hi All,
I am a mother of a 3year old boy who got a SCI (T3)along with other medical problems at 18 months old due to Medical Misconduct. It is now 2 years on and things are settling down. Went to see the Spinal doctor a few days ago and he said that our Son will need surgery in the new year to insert growing rods as his Scoliosis is developing really fast and he did not want it to fix. This is extremlly scary as we are in this position with our son due to surgery (which was actually on his heart). In New Zealand there are not many young children with SCI for me to contact their parents, It's really hard to go to the doctors and they comment that they are unsure as there are not many young children like my son in NZ.
Has anyone gone through this procedure with their young children? Is there any restriction to their movement?
They doont want to do the full Scoliosis Surgery until he is older but we will have to go back every 6 months to extend the rods.
I am interested in any advice, or anyone who has a child in the same kinda situation. I look forward to your replies

[wcgirl91]

Hi,
I never had the growing rods because me and my parents didnt want to go through all the extension surgeries. I just wore a body brace until my hand x-ray howed that I was finished growing. Any surgery that tries to correct scoliosis with rods will restrict movement. I never had a problem not being able to do something because of my rods, but im sure its different for everybody. You just have to learn how to bend to do what you need to do. At times I have felt a little discomfort trying to do something, but I just stopped what I was doing until the discomfort stopped (usually in a couple seconds).The doctors will most likely say that the rods will restrict movement. especially if the rods are going to be attached to the pelvis. As I said before, this never really hindered me, but I did break my rods once. You may be thinking that the rods are going to be titanium and they wont break. That's what I thought too, but the doctors told me that anything will break if you bend it a millio times. However, when my rods broke we didn't know till I had a regular check up with x-rays. It didn't hurt and the one was broken for over a year and there was no complications. The doctors told me though that I needed to get them fixed. This led to many surgeries due to wound infections. If I had to do it over, I wouldn;t have fixed them until 100% necessary.
Now before I got my rods I had a wedge ostiotomy. This procedure used wedges and screws to correct the scoliosis. It was an experimental surgery that was supposed to allow more movement that the fusion with rods. However, for me it was not successful. This was probably about seven years ago so I don't even know if they still do this. Looking back I would never have gotten it done. I wanted to go straight for the rods but my parents made me get the experimental surgery in hopes that I would be able to move more.
I hope this helps.