Have scoliosis/spinal fusion?

Options
I was diagnosed with scoliosis when I was 12 it was too far gone to deal with or get a back brace. I had a spinal fusion when I was 15 Im 23 now. Im just looking for other people that suffer from scoliosis now or that have had a spinal fusion to talk to about the pain and struggles that come with it. I have never talked to anyone else thats had it done. I deal with pain daily. And just want people who understand
«1

Replies

  • RuNaRoUnDaFiEld
    RuNaRoUnDaFiEld Posts: 5,864 Member
    Options
    Just bumping for you :)

    Good luck with your journey. I suffer terrible pain at times due to brittle bones so I understand a little.
  • jayv85
    jayv85 Posts: 142 Member
    Options
    I have scoliosis. I'm assuming it's not bad, but it's a 12 degree curve. I know it causes my back to really hurt at times to the point that I couldn't sit up unsupported before.
  • zcb94
    zcb94 Posts: 3,679 Member
    Options
    My >90 degree curve hurts daily but there're supposed to be risks that I think far outweigh the benefits of straightening, so I'm not going to worry unless my spine starts squeezing my organs out of whack.
  • brittnichol
    brittnichol Posts: 42 Member
    Options
    @RuNaRoUnDaFiEld thank you so much!

    @jayv85 ah man any curve can be so painful. Has your dr/chiropractor recommended anything to keep it from getting worse or to ease the pain?

    @zcb94 yes that's a good idea. I dont know what my dr was thinking I was just 15 I was still growing! My spine was going into my lung though. Same question I asked the other poster Has your dr/chiropractor recommended anything to keep it from getting worse or to ease the pain?
  • jayv85
    jayv85 Posts: 142 Member
    Options
    Any time I would go to a Dr they would just say there's nothing I can do about it. Of course that was army drs. I haven't seen a civilian Dr about it. I probably should because I seem to have more bad days than good lately. And it feels like it's starting to affect my running too. I probably just need to stretch better though.
  • brittnichol
    brittnichol Posts: 42 Member
    Options
    @jayv85 yes stretching is a necessity! When I was first diagnosed my dr recommended putting a tennis ball on the ground and laying on it and moving around with my legs up on a couch and it helped with pain sometimes. Or just standing against a wall but if you have deep pain its better to lay on floor.
  • Pandora_and_her_box
    Pandora_and_her_box Posts: 240 Member
    Options
    I have scoliosis! First suspected by my school nurse but overlooked/rubbished by my GP, when I left school at 18 and got an office job, I suddenly found myself in a lot of pain. Went to an Osteopath aged 19, who told me I have a mild scoliosis. I suffer with stiffness/needing to click around the area of the curvature and very overstretched/sore muscles that only strong pain killers can touch. I have times when it feels like I'm in constant pain. My focus will be to build up my back muscles to try and deal with it.
  • zcb94
    zcb94 Posts: 3,679 Member
    edited April 2017
    Options
    @brittnichol, my pain/ortho guy is 100% behind what my primary care one at the time recommended for the pain. My ortho guy has some mobility issues of his own, so we kinda "get" one another. I just have to know when to take a dose of my medicine and...pray. I was practicing slow horseback riding once a week to strengthen up in the event that surgery would be my only hope and to relax the muscles/keep the nerves calm, but that's no longer an option because "life has happened." As far as keeping it from getting worse, I would have to ask him as soon as life stops happening so fast. I need to lie perfectly still for another medical reason right now, so I guess that can help keep my back from further curvature (though it doesn't help the pain).
    Edited to admit that I've never had it fused, nor will I, not even on doctor's orders.
  • YvetteK2015
    YvetteK2015 Posts: 653 Member
    Options
    I have 2 spinal fusions from shattering vertebrae, and I have scoliosis which my back surgeon wanted to fix but that wasn't going to happen again. 2 fusions were enough for me. I have a tremendous amount of pain from my fusions. My back muscles are not strong at all. I'm always using heat or ice. I can't use painkillers. The only thing that really works for me is walking a lot. The more I move, the less pain I'm in.
  • brittnichol
    brittnichol Posts: 42 Member
    Options
    @Pandora_and_her_box that's a good idea to build muscle. I deal with horrible pain daily and found stretching helps. The last few years Ive gained a lot of weight and can tell its so much worse than it was so Im trying to get my weight back down. I can't take pills I used to have some but they made me sick so I rely on Advil which doesn't put a dent in it.
  • brittnichol
    brittnichol Posts: 42 Member
    Options
    @YvetteK2015 I moved a year ago from my hometown. It used to have a walking trail and i walked daily I miss it so much your right the more you move the less pain there is. I have a treadmill but I dont even use ot because I also have a lower back problem and it agfects that. Im terrified of dogs so I never have tried to walk my neighborhood. But you saying that reminds me of some of the relief I got from walking. Why cant you use pain killers? I cant take them because they make me sick to my stomach no matter what I eat before. Also dr prescribed lidocaine patches dont do anything for me at all.
  • brittnichol
    brittnichol Posts: 42 Member
    Options
    @zcb94 oh no Im so sorry! I hope you have some relief from that soon!
  • YvetteK2015
    YvetteK2015 Posts: 653 Member
    Options
    @brittnichol I don't an area to walk around so I use my treadmill. I can't take painkillers because they trigger my migraines. I do use heat and ice, I also have lidocaine cream which once in a rare while will help some. When it's truly bad, I use my tens unit. That has been a life saver for me.

    If you don't have a tens unit, you might want to look into getting one. Better than any patch, pill, or heating pad.
  • brittnichol
    brittnichol Posts: 42 Member
    edited April 2017
    Options
    @YvetteK2015 man that is horrible for something thats supposed to help pain ends up causing more. I need to use heat and ice more I honestly never really have . Thanks for mentioning that, Im going to look into it now. Can you let me know where you got yours and brand, cost estimate?
  • runningkel
    runningkel Posts: 54 Member
    Options
    There's a DVD called something like "yoga for scoliosis" that my PT recommended that is amazing. The models/instructors all have visible scoliosis and discuss modifications you can make. I've mostly done the stretching one, but there's 2 other sessions, too. It's not complicated pretzel-yoga stuff, either! I use a couple of the stretches almost daily.
  • brittnichol
    brittnichol Posts: 42 Member
    Options
    @runningkel Thanks so much Im going to look for that. Sounds very useful.
  • YvetteK2015
    YvetteK2015 Posts: 653 Member
    Options
    My tens until is LG tec elite. But this was was pricey at about $120. You can just google tens units and you'll find medical supply places that will start selling them at around $40.
  • carmen412
    carmen412 Posts: 8 Member
    Options
    I have Lordosis. I'm not sure how that compares, but there are times I can barely walk ten feet without excruciating pain in my lower back and hips. The best thing I've found is to reduce foods that cause inflammation. Cutting sugar out helped with the pain more than months of Physical Therapy.
  • brittnichol
    brittnichol Posts: 42 Member
    Options
    @carmen412 oh no thats horrible. I hope you get relief. Thanks for suggesting cutting out sugar I need to try this I eat lots of sugar. I was in PT for 6 months and it didn't help much.
  • brittnichol
    brittnichol Posts: 42 Member
    Options
    Currently making a list of all the suggestions y'all made. Lots of things Ive never heard of or thought of trying or stopped doing and I need to start again. Thank you all so so much. :)