Looking for Support from Fellow Scoliosis Surgery Patients

Advice? 1.research, research the surgeon (how many surgeries similar to yours, read reviews, ask, ask questions (I researched the internet regarding my condition and made a list of concerns and questions) 2. Remember- the surgeon is working for You! Don’t be shy about taking up their time, ask and talk until you are completely satisfied with their response! 3. Check out your options- not all conditions are treated the same! Find the correct doctor/hospital that is best at treating your diagnosis! FYI I went to Mayo Clinic for consultation. They reviewed all my doctors notes, x-rays and MRI’s I provided! Then, sent me a letter stating, “I wasn’t part of their criteria for surgery!” My diagnosis was Idiopathic Adult Onset Scoliosis with app. 86° curvature and kyphosis! Ugh! You might hear, read or be referred to who seems to be the best for you- Not always true! Good luck to you all!

Relatable!! I’m 17 about to turn 18. My scoliosis went undiagnosed until September 2021. My surgery is April 15. Love to you all!!

Mine is 70 and 80 degrees kyphoscoliosis and scoliosis and lordosis... definitely causing damage now and I'm just begging it won't progress to life threatening. I have EDS and I want to find out if tethered cord could be causing it and be relieved.

I was diagnosed at 13 and had my surgery before Christmas the same year. It’s not as scary as it seems, but the best advice I can give is to exercise once your doctor allows it! Stretches, walking, building muscle, etc. Not exercising for long stretches of time will cause chronic pain. Also you’ll be able to feel when it rains 😂 good luck in surgery! You’re stronger than you think.

I hope everything goes well for you. I had spinal fusion from T4-L4 in 2001. After a growth spurt my scoliosis had worsened considerably. Braces stopped working and surgery was the only option. After surgery I only have a 15 degree curve. If you have any questions I will try and answer them. 🤗

I’m getting surgery this summer

thank you so much!!

i had my spine fused at 16 ❤️ i have tons of screws and metal and crap in my spine, i’m like a robot. 😂 in terms of healing it took 3 months, i was on opioid pain meds so it wasn’t bad unless i forgot to take them or bent my back by accident. sleeping in the little brace shell thing sucks at first but i got used to it. also not being able to shower was ICK. the social isolation aspect of it was the worst part to me honestly

hi! i had surgery about 2 months ago from t4 to t12. i’m gonna be honest, the first two weeks were pure agony for me. but i promise you, it gets better and it was 100% worth it. i feel no back pain anymore, you may have a different healing period though.

Good luck; my surgery is on April 11th. 🙏

Mine isn’t bad enough to need surgery. My heart goes out to you and I wish you luck with surgery :)