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Has anyone had the Scoliosis operation twice?

I had correction of my Scoliosis in 2012. They went through the side instead of having it down over my back. I recently had a follow up with my Consultant and had some really bad news. I had my x-rays which showed that my curve was coming back. He gave me the option on whether I have a second operation or not. Instead of fusing quarter of my spine like before, the whole of my spine would be fused so I would be less flexible. There are lots of pros and cons to having it done or not and I am really confused about what to do. I have been in so much pain for the last 2 years due to my operation and I have been told the new operation could free me from pain or it could be just that same. So I am just so confused on what is right to do and just wanted some advice and some thoughts please. I would really appreicate it :)


  • I'm sure that others who have had scoliosis surgery will chime in.......but if I were you, I would consider getting a second and third opinion on another surgery. It may be that you do indeed need to fix the curvature, but other surgeons, who specialize in scoliosis might feel differently and suggest other options...so getting other opinions might help you better understand your options or give you options that you haven't gotten so far.....
    Hang in there,
  • I had a full spinal fusion when I was thirteen and required a revision since then (doc forgot to screw in bottom screws). Although I am no doubt much less flexible, I have had no problem staying fully active and have not had any complications in the ten years since. The only trouble I've had is sitting all day at the desk job I have, and that might just be the push to do something more enjoyable! I'm sorry you've had to have gone under the knife so much, I hope that you find relief soon whether in surgery or elsewhere!
  • MemleighMMemleigh Posts: 1
    edited 06/30/2014 - 5:12 AM
    Hi Emily,

    I had T1 to L3 fused with the now almost defunct (non flexible) Harrington Rod in 1978. After 34 years the vertabrae below the fusion started to degenerate from only L5 taking the brunt of all my activity and weight and two pregnancies over three decades. For some reason L4 is untouched and holds no weight so it's probably a 15 year old disc :), either way I had extraordinary pain for many years, avoided more surgery, had PT to limited success and finally in Summer 2012 ended up in a wheelchair. As a high school teacher this was extremely limiting and I was not satisfied with a local Orthopedic Surgeon's decision that this was the safe way out. I went back to my original hospital in NYC but they no longer took my insurance. I finally found a team who used to work at * EDITED who specialize in extreme and unusual spine conditions. A Neuro and Ortho work together. I had LF-S1 fused with a plate, 4 pedicle screws and a titanium cage that was to protect the fusion as it healed. All in all, I think I only have cervical vert. unfused and am known in the field as "an extreme fusion". Probably the closest I'll ever get to Extreme Snowboarding :). Multiple surgeons have studied my MRI across the U.S. and at conferences. I was a revision candidate because I also had severe flatback and was facing downward more and more. My doctors managed to fuse, mini-salvage existing thoracic/lumbar upper areas and give me an inch of height back and a waistline in the back for the first time in many years. My original rod was too embedded to be removed. Had the surgery Oct. 2012 and was back in the classroom in Jan 2013. I have no pain related to the earlier problems, just a bit early on when I would over-do it. It was the best decision I ever made and feel like I wasted years at PT and eating Advil like candy, missing work, etc. So - not to say everyone is the same but I am 51 now and was 15 at first surgery and even though I have some limited movement, to me it's my normal since I don't remember what it was like much before 15 anyway. Yes, I am less flexible, but I have no pain. I don't miss work or my kid's activities anymore. I can even dance at weddings, (not like I used to but at my age who cares anyway), and I avoided a total revision which would have likely required me to retire and recuperate over a year missing bringing my son to college, weddings, and other important events. You may never have the flexibility others have - and watching those dance movies my daughter watches I always feel a bit of jealousy - but it could always be worse and unless someone asked, they would never know I am probably 90 percent metal. I wish you all the luck. If you would like to direct message me somehow please feel free although since I'm new to this board I don't know how to do that yet. All the best to you...lisa

    Scoliosis diagnosed age 2
    Prenyl Body Jacket Scoliosis Brace EDITEDNYC age 12 to 15 (no success)
    Harrington Rod Placement with T1 to L3 Fusion with illiac crest bone age 15 1978
    Salvage (mini) and - L5-S1 fusion with illiac crest bone, steel plate, pedicle screws and titanium cage 2012 age 51

    Post edited by Sandi- Please see the forum rules at the link below for more information.
    You agree not to post specific physician names or health care facilities , devices or product names on Spine-Health.com.


  • Being fused conventionally from the back instead of just from the side is very limiting and you will notice the loss of flexibility, so be sure to get lots of opinions as to what your options are. Best of luck to you.
  • QuebekerQQuebeker Posts: 2
    edited 07/22/2014 - 11:15 AM
    I am in my early 30s and had 4 scoliosis-related surgeries, including mid-T to lower-L rods in when I was about 15. I have to say Emily that every surgery is very painful, but as Sandy said, your main concern should be necessity.

    If you do indeed have to go through a second operation, just be brave and see it as a simple challenge with which you HAVE to be comfortable and positive.

    Flexibility may be reduced a lot, as titaniumjames wrote sitting for long periods may be uncomfortable or painful, and aesthetic concerns related to non-mobility for women... not the sexiest. Recuperation periods are long and pain will stick around. But feeling your pain is also monitoring your convalescence, it is necessary.

    But once you get through it, you may do as me and run long distances and do lead climbing 2-3 times a week. Take this challenge and turn it in a positive obligation for you to keep fitter than most. You'll see your "handicap" as a BIG motivator rather than a fatality.

    Good luck, and keep positive!
  • 5 years ago today, when I was 14 years old, I had spinal fusion surgery. Almost 3 years later, the few spinal columns underneath that weren't fused started to curve again. At 19 years old, my right leg is always in pain and I feel so beyond my years because how debilitated I am. I started researching to know if others have had the same issue and have had to have the surgery twice. I go back to see my doctor in October and I think I need to tell him I need to have surgery again, even though I'm terrified to have it again. It hurt so much the first time.
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