Scoliosis Support Group

Scoliosis affects all ages. Unlike the naturally occurring curves in the spine, scoliosis causes the spine to curve abnormally to the left or right.

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Alienaubs 04/09/2017

I am a 21 year old with a baby. I had my first surgery for scoliosis when I was 14 and got mrsa from the rods when I was 15 and had them removed. My mom claims that I'm not in pain and that I use it as an excuse to not do anything. I was hoping I could find some one who could possibly talk to my mom or even just let me show her your story about living with scoliosis.

enigmaticloner 04/10/2017

Well I could give you a little bit of my story about living with scoliosis. I have actually made a video about it and it's on my YouTube channel, if you want I can send you the link to it and you can show it to your mother. It might help her understand it a little bit more. In short though I've been unemployed for years partially due to my scoliosis and the complications that arose from it, I deal with a lot of pain quite often and I've gone through many things trying to find a fix but to no luck.

Mariko 04/11/2017

Hi enigmaticloner, I would like to see your youtube video. Can you please send me the link. Mariko

Alienaubs 04/11/2017

Yes! Please and thank you!

enigmaticloner 04/11/2017

I messaged you both.

LauraMC 10/05/2017

Hi. I know you posted this months ago but I felt I should respond. I have been disabled since 2003 (I am now 52) and had adult onset scoliosis due to bad prior surgeries. Anyway, I always had pain from my back but once I developed a 49 degree curve it got much worse. I couldn't walk without assistance, was short of breath, tired easily, hurt like hell, was reliant on opioids and was mean most of the time. My family is truly amazing since they put up with me for so long like that,

I had a friend in high school that had scoliosis and I knew nothing about it but she always told me how she hurt all of the time. Now I get it. I have had 8 surgeries on my back but number 6 and 7 really did the damage. My pain multiplied dramatically as my curve got worse. There were days where I just laid on the couch crying and whining because the hurt wouldn't go away.

I would happy to talk to your mom. I am a mom of two sons, 25 and 23, the oldest suffers from joint pain and requires meds to help with his pain. I know it is difficult for someone who has not experienced this kind of pain to comprehend that we are NOT exaggerating or lazy. My husband didn't get it for a bit either, he knows better now. I took him to all my appointments, he watched me go through every surgery and I educated him on pain. Maybe talking to another Mom would help??

The fact that you have a little one to take care of I'm sure can be challenging on a good day. I know you posted a long time ago and if you read this and I can help, reach out. Been there. I finally had corrective surgery in 2016 and am better now but I remember every painful, miserable day.

Good luck and Good health.

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