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Scoliosis surgery question

rae1112rae1112 Michigan Posts: 147
I have my fusion surgery scheduled for March 9. 
I am still terrified. I have read so many stories online about people having chronic pain  after the surgery and many saying they wish they had not done it. I'm so discouraged. I have also read some stories of people who are happy they had it done. I am nervous, what if I'm not one of those.
I'm curious though, those people who had fusion and say they regret  it I wonder if they hadn't had surgery what their pain or problems would have been?
Anyone have any thoughts? 
I'm worried about the quality of life if I do have the surgery, but also if I don't . 
BTW I'm 35 and mri showed nothing going on other than the 57 degree left curve. I am not in fantastic shape by any means but  I'm on the thin side. Not  sure if any of that matters. Oh and Dr said my spine is flexible. He also said I have small bones and I'm wondering if that will make fusin harder or have any effect on surgery?


  • WLLadyWLLady Ontario CanadaPosts: 1,493
    hi rae! i think the reason we don't hear many of the success stories is because they are out living their lives and not sitting on the internet! personally i know someone with a shorter fusion (2 level) and 4 weeks after surgery she's back to work and starting to work out again and doing great. i see her at work all the time.
    i haven't had my surgery yet, but i know i can't keep living like this....so regardless of the outcome i know what i need to do. if i didn't have any pain, i'm not sure what i would do. i asked my surgeon, what if i do nothing, and he said i would get monitored every 6 months and when the time came that something had to happen we could do it then, but he recommended me not waiting until that point because of the radiculopathy i was having.
    flexible is awesome! my curve is still flexible too-my surgeon is hoping to get me back to under 5 degrees!!!! i'll gain 3 inches in height back! i honestly don't know about the small bone question, mine are opposite and growing daily with all the bone spurs LOL. might be something you can ask your dr the next time you see him. i understand they have all kinds of different sizes/lengths of screws etc...
    Veritas-Health Moderator
    Dec '16 T10-S2 fusion with pelvic fixation. Laminectomies L2, L3, L4, L5, facet removal, cages L4-5, L5-S1, severe scoliosis, arthritis and stenosis repair. 

  • rae1112rae1112 Michigan Posts: 147
    Lol probably true about the positive stories and them being out living their lives. I get so much more terrified all over again every negative story. I think I need to stop reading them because there's no  way to know how it'll turn out. but if I don't do it i know it'll get worse. my ribs are so uncomfortable, today is  a worse day, feels like theres no room and they are crushing in. I've been getting a lot more heartburn too. I think it's due to that as well . having a harder time breathing in. 
    WLLady when are you having your surgery ?
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  • Hi Rae,
    I too will be having scoliosis surgery in the next 6 months. I'm terrified but I wish I could have done it sooner.
    I will be 50 in 2 months. I have an S curve, top 50 degrees, bottom 70 degrees. which has now caused Lumbar spinal stenosis. I just had to buy a walker with wheels just to get around. Just standing and walking the pain is unbearable. I too have seen so many negative articles but I believe, I have to at least try. Try to keep this from getting worse.
    My main thing i wanted to say is although it is terrifying, the good thing is that you are still flexible for them to get your curve a lot smaller. This will ultimately keep you from having more issues from it.
    I wish you all the best of luck.
  • WLLadyWLLady Ontario CanadaPosts: 1,493
    Got my date!! December 19-so just a momth away. I have to admit i am panicking....badly....lol. but i want to do this. I have to do this....i cant live like this. 
    I hope we can all be success stories! I am going to post about mine when i can....i might be in hospital for a week or two....
    We will all be okay.....
    Veritas-Health Moderator
    Dec '16 T10-S2 fusion with pelvic fixation. Laminectomies L2, L3, L4, L5, facet removal, cages L4-5, L5-S1, severe scoliosis, arthritis and stenosis repair. 

  • rae1112rae1112 Michigan Posts: 147
    Thank you WLLady! Let me know how everything goes. I do keep telling myself if I don't do something now it'll get worse and I'll regret not going ahead with it. I'm wishing you the best of luck. 
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  • rae1112rae1112 Michigan Posts: 147
    edited 12/07/2016 - 7:00 AM
    Talldrea, what levels are you having fused?
  • i had to have surgery to correct a close to (cant remember exactly) 96 and 28 degree s curve, i want to regret it but i cant. i am in a lot less pain now... 
    i had no choice but to get surgery.

    when i finally got diagnosed my right shoulder/arm was so twisted it looked broken, had to stop going to school.  around that time i believe i had 72 and 18 degree curves.  after a couple weeks it jumped to the 90s and 20s. i was told i had no choice but to get surgery, i was severely afraid and contemplated leaving the hospital the night before. to my luck though my surgery was magically almost pain free... 

    my theory is that if you let yourself lay down after surgery to long your pain gets worse.... i set up by myself immediately after surgery when i woke up in the operating room. it hurt and was difficult but my surgeon said it was safe. it felt like all my muscles in my back moved and my nerves all stung me a bit. after that though i had a lot less pain, i was to high the first day to move but after that i set up again and i felt better, next day i started walking and i kept just feeling better and better. this is my own experience though but if you feel like you can and your surgeon agrees try and set up as soon as you can after surgery. in my experience they tried to keep me as mobile as possible.
    i also have a very high pain tolerance from all the years i spent dealing with my right arm so that contributed im sure.

    so for me yes it was worth it,  i traded severe pain for a whole lot less pain and a normal body. before it looked like my hips were touching my ribs.  
    new problems are worse chronic insomnia, body is tense and cannot relax. shoulders have 2 boulders on top, have to frequently massage myself.  due to the off balance of my body my shoulders fight each other, they cannot find middle ground. now my hips i believe are deciding to do what my shoulders are lol. but i can manage with all of this.

    you are on a forum where everyone is having issues after surgery, so don't expect to here about the perfect outcomes :p. but from listening to my surgeon talk about his other patients the outcomes are usually great, or he is just a great surgeon...

    worst thing about surgery is i could not continue going to school. i cannot sit in a hard chair to long unless i can get up every know and then. otherwise my shoulders go up to my ears and my right shoulder blade swells up.

    my advice is to not worry, i know that is difficult... but if it is going to happen, just try and find some positive reason to accept it. 

    and before surgery i was really weak... i still had a great surgery in spite of this though :)

    here is my xray: https://i.imgur.com/jtsa5m3.jpg
  • swantonsswanton DelawarePosts: 2
    Can anyone recommend a good surgeon in Philadelphia?
  • LizLiz Posts: 9,755
    hello swanton
    it is not permitted for members to make any recommendations of medical professionals etc

    please click on link for information about spine-health

    welcome to spine-health


    Veritas-Health Forum Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • WLLadyWLLady Ontario CanadaPosts: 1,493
    Thanks jason!! Your story is inspiring to me. My surgery is on monday....i am scared to death but like you i know this had to happen.  My scoli is all lumbar but i am no longer straight, my hips face forward while my shoulders are looking 15 degrees to the left! And i do think my left ribs hit my pelvis by the end of the day. So. I know it has to happen. I hope that i can be realistic and happy with what will be....

    There are some great updates in the december surgery buddies thread with people going through and doing quite well!!!  And i hope to post as much as i can after my surgery too. I am so tired of being restricted especially now theres a foot of snow on the ground and getting around is interestingly difficult....
    Hang in there everyone!!
    Veritas-Health Moderator
    Dec '16 T10-S2 fusion with pelvic fixation. Laminectomies L2, L3, L4, L5, facet removal, cages L4-5, L5-S1, severe scoliosis, arthritis and stenosis repair. 

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