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Posted in: Back pain, Scoliosis, and Surgery.

Pain 25 post scoliosis surgery and considerations when considering surgery for your child

Started by heatherf2430 on 11/21/2020 9:20pm

I am a 40 year old female. I had scoliosis surgery in 1995. Cotrel-dubousset rods were used they run from T3 to L4. Basically my entire back is fused from my shoulders to my hips. Though my legs are the same length, my right leg is roughly .5-1 inch higher than the left because my hips are not level.
I have experienced intense pain and discomfort that has gradually gotten worse over the past 15 years. It started when I was pregnant in 2005. However, it has gotten progressively worse over the years. It was isolated to my very lower back and hips (just below the lowest fusion site) and has progressed to my shoulders and top of my back (just above the highest fusion site).

Has anyone else experienced this? I know my surgery was more extensive than most scoliosis surgeries because it involved the majority of my back. But, is anyone who had thoracic correction years ago experiencing this in their upper back? Is anyone who had lumbar correction experiencing this in their lower back? Some days I can barely move. Some days I experience what feels like an electric shock shooting across my shoulders, a stabbing sensation in my lower back, or a pain shooting down my legs.

Also, it may be relevant to note that everything that was told to me about long-term recovery was untrue. I was unable to participate in any athletics. Although I only participated in swim team, there was no way to accomplish a "flip turn" as it requires tucking in one's legs toward the body. That was impossible with an entirely straight back. I started to look for an alternative sport, and 99% of them required some mobility in the back. So, if you are considering surgery for your teenager, and sports are an important part of their life....please consider the areas being fused. Common practice is to hand patients an "information sheet" that contains timelines. However, those do not take into consideration the length of fusion. Sure, the doctor will clear the child to participate, but that does not mean they will be physiologically able to participate.

Long term recovery and complications were never discussed, nor were alternate options.

I'm not suggesting surgery wasn't the best option. I am, however, suggesting that I wasn't given all of the information to make an educated decision. Also, of course my parents were going to opt for me to have surgery when things like me paralyzed and my organs collapsing were discussed. The internet wasn't REALLY available back then so they were unable to research anything. Therefore, they relied on the doctor to lead them in the right direction.

If you are a parent and considering this surgery for your child, PLEASE use the resources available and question everything the doctor says. It will not hurt your child to try alternative treatments for 6 months or so. If improvement is made, I suggest keep doing it until there is no more improvement. If no improvement is made, then it is time to strongly consider surgery.

If you have any questions about the recovery process and long-term implications, feel free to message me.

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