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Thread: Long term results in having or not being fused to your sacrum

  1. #1
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    Long term results in having or not being fused to your sacrum

    So I am over analyzing this surgery. But in your opinion if you were fused in your middle region and the lowerbraes were progressing and your rod you have in now is broken in two places.what is more beneficial surgery or not? What would happen if I didn't have the surgery? I just seem a lot younger then a lot of you on this I am only 31

  2. #2
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    Pardon me but that is definitely a question for an experienced orthopedic surgeon specializing in spine!
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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    "We are all African."

  3. #3
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    Quote Originally Posted by annabeller View Post
    So I am over analyzing this surgery. But in your opinion if you were fused in your middle region and the lowerbraes were progressing and your rod you have in now is broken in two places.what is more beneficial surgery or not? What would happen if I didn't have the surgery? I just seem a lot younger then a lot of you on this I am only 31
    I haven't had surgery, so I'll tell you that upfront. If both of your rods are broken, I would want to know why. I have read on here that pseudoarthrosis (bone not fusing) will eventually put enough stress on the rods and will break them. Also if you are progressing still, I would question that as well. Have you been to a specialist and asked his/her opinion? Are they wanting to do surgery again? There are people on here that are a lot younger AND older than you that are having revisions. I've read about a couple of very young people in their late teens/early 20's who've had more than one revision. I would strongly urge you to go to a spine specialist and find out WHY those rods broke. Best wishes.

  4. #4
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    Quote Originally Posted by annabeller View Post
    So I am over analyzing this surgery. But in your opinion if you were fused in your middle region and the lowerbraes were progressing and your rod you have in now is broken in two places.what is more beneficial surgery or not? What would happen if I didn't have the surgery? I just seem a lot younger then a lot of you on this I am only 31
    I'm not a spine surgeon, but I work with 5 of them. I would definitely lean toward surgery. The broken rods mean that you had, and probably still have, at least one level that isn't fused. If you don't have any pain, than you can probably avoid surgery, at least for awhile. But if you have pain now, it almost certainly won't get any better, and surgery seems like a resonable choice.

    Best of luck with your decision.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
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    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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  5. #5
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    my broken rod

    back view S2 I0.jpgback view S2 I0.jpg

    I hope I attatched that right. That is a xray of my back with the broken rod. My ortho said it didnt fuse or heal all the way. I am just such a chicken I just wish it was that the DR said you have to have surgery! Not its up to you. Has anyone else have their rod break

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    Quote Originally Posted by annabeller View Post
    back view S2 I0.jpgback view S2 I0.jpg
    I hope I attatched that right. That is a xray of my back with the broken rod. My ortho said it didnt fuse or heal all the way. I am just such a chicken I just wish it was that the DR said you have to have surgery! Not its up to you. Has anyone else have their rod break
    Well that x-ray would certainly explain why your scoliosis is progressing. It is not only broken, but it looks as if it has come loose from the top screw. I'm not a doc, but it looks like there is nothing left there to stabilize your spine. If you search the forum, you will find many instances of people breaking rods from nonfusions. It is a reason to have revision. Is the doctor you are seeing a scoliosis specialist? I can't tell you what to do, as surgeries are painful and risky. With that said, I know what I would do. Please see a specialist and get his opinion. You can get a list of doctors who are scoliosis certified from the SRS website. I believe there is a link somewhere on this website. You can find a top-notch doctor closest to your area.

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    My doctor speclizes in scoliosis revisions. I am just in denial. I think maybe Im not that bad or maybe it really wont put me in a wheel chair. He said my lower part of my back was curving really fast and in 4 5 years Ill be in a wheel chair. I am more leaning towards having it. I am just so scared of the outcome. I hear lower fusions dont fuse as well and if I already had it break wont it break again? These are just my thoughts I have. thank you for replying to me and being honest. I need that.

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    Quote Originally Posted by annabeller View Post
    My doctor speclizes in scoliosis revisions. I am just in denial. I think maybe Im not that bad or maybe it really wont put me in a wheel chair. He said my lower part of my back was curving really fast and in 4 5 years Ill be in a wheel chair. I am more leaning towards having it. I am just so scared of the outcome. I hear lower fusions dont fuse as well and if I already had it break wont it break again? These are just my thoughts I have. thank you for replying to me and being honest. I need that.
    It might help you to talk to titaniumed. He is fused from T2 to pelvis with pelvic fixation anchors. If you would end up in a wheelchair and your scoliosis is progressing that fast, I think you already know what the answer is to your question. It seems a little odd to me that they only used one rod to try to fix a curve that bad. What are your measurements? It might not hurt to get a second opinion.

  9. #9
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    My doctor is the second opinion. My original doctor has retired. Ya Im not sure why they only used one rod. But I had no idea what was going on.
    Thank you. You are right I know the answer. I just dont want to do it. And I second guess everything. So it helps me a ton when you guys are like "um duh you need surgery." LOL

  10. #10
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    Anterior surgeries only use one rod to my knowledge. And for some reason, you can get away with less levels fused with anterior vice posterior. I have no idea why that is. Maybe Linda knows.

    I am guessing because she has a TL curve and is so young, they were standing on their head to not go below L3. And judging from the breakage and the present situation, the fusion might not have been long enough. The lumbar doesn't appear to be stabilized but I don't know if that was due to the pseudoarthrosis (presumably causing the breakage) or if the fusion simply needed to go lower and they didn't want to put a young person in a countdown to fusion to the pelvis unless they were absolutely positive it would be required. I think these guys take chances like that with young folks and maybe they should.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  11. #11
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    Wow you guys know so much about scoliosis. I honestly am just learning.

  12. #12
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    Hi there,

    I just looked at your x-rays, which are pretty impressive. It seems like since you have pain that is debilitating and have the broken hardware, surgery is the obvious choice. A good surgeon will rarely tell you that you "have" to have surgery. You live in your body, so only you can decide what is a tolerable life to you. However, from your description of your situation, it sounds like the obvious choice. Of course it is very scary, but you are young and you will make it through. Since you had a pseudoarthrosis, your surgeon should take extra measures to ensure fusion.

    Was your surgery done from the side/front? It looks like it with the one rod. I would also want to know about the area above your rod, as it looks quite curved also. Have you been advised how high up the surgeon wants to fuse?

    I had a fusion from L4-S1 when I was 17, for spondylolisthesis. I also have scoliosis. It was 1984, so hardware technology was not nearly as advanced as today. My surgeon felt there was nowhere to attach hardware due to my needing a laminectomy at the time, so I was put in a body cast for three months. After three months I was allowed to resume most activities, and since I was 17, I was very active! I didn't find out until I was around 40 and was developing increasing back pain that the L4-5 level had not fused. I tried all conservative measures for two years, during which my lumbar scoliosis also increased from 30 to 47 degrees, so 13 months ago I had a fusion from T8-sacrum. Early recovery is certainly no fun, but I am doing great now, work full time in an active job and have two younger school-age kids. My surgeon did an inter body fusion at L4-5 as well as posterior, plus BMP, to ensure successful fusion.

    You can make it through this. If you can exercise at all it really helps to do so in preparation for surgery. At least one second opinion is also highly recommended.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  13. #13
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    My doctor went through the side and removed my left bottom rib. This time he is going thru the side again to remove the broken piece of rod and two lower screws. Then a week later going through my back to fuse to my sacrum. Wow had did you handle being in a body cast for 3 months!! I would die of boredom. You are a very strong person. How old are your kids? I have 2 boys 7 and 11. They are so cute and worry about my back all the time it breaks my heart. Noone has said anything about my upper back curve. Which I have wondered why but the 2 doctors I have seen are just really concerned about my lower unfused part. How could it put me in a wheelchair though? the only thing I can fin on the internet is your organs being crushed if you dont have surgery. So is this normal?

  14. #14
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    Hi Annabeller...

    I just replied to you on another thread regarding your X-ray.

    If your surgeons is a revision specialist, and he told you that you'd probably end up in a wheelchair, I would be concerned. I've heard other patients say that their doctors have told them they'd "end up in a wheelchair", and all I can think is that it' seems an awful lot like a scare tactic. While some people definitely end up in wheelchairs, it's actually pretty rare. While if I were in your shoes, I'd probably go ahead with the surgery, I would not want to be scared into making that decision. (If, on the other hand, the statement was preceded by a question from you like "What is the worse case scenario", then it might be an acceptable statement, preferably followed by a reasonable estimate of your chances of ending up that way.) I've been in exam rooms while other patients talk to their doctor, hundreds of times, and I don't remember ever hearing anyone being told that they would likely end up in a wheelchair.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  15. #15
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    Hi, I'm new to this website and can't believe I finally found this!

    I was fused back in 1993, and had the rods removed in 2002 due to severe pain. I'm afraid that I need to be fused all the way down to the sacrum but am afraid to do so, not wanting to go through surgery again, and not knowing if down the line I'll get pain elsewhere again... I don't know how to post a new message (could barely figure out how to reply to you, lol), but I'd like to find out from others who have been fused down to sacrum how they're doing 10, 15, 20 years down the line,
    My pain started a bunch of years after the surgeries, so the long term affect is what I'm concerned about.
    Hoping to hear from anyone! Thanks so much.
    ps: All three of my teenagers have scoliosis too. So far I've been successful with bracing (Spinecor brace) to keep it from getting to the point of needing surgery.

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