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Thread: Failure of fusion

  1. #16
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    Just wondering about this... I thought that finishing a fusion at L5 was supposed to be a bad idea, and that it was usually recommended to go down to S1 if the fusion was going to be that long. Does anyone know if I misunderstood this? - or if this research could alter opinions on that?

    On a different but slightly related note, do surgeons ever fuse one part of the spine, then leave disks intact for a few levels, and then fuse another bit lower down?? (I'm asking partly out of self-interest... I have a bad disk at L5-S1, and often wondered whether, if I got surgery for the scoliosis, I could get rid of the pain from that at the same time...)

    Take care everyone. Laura
    30y/o
    Upper curve around 55
    Lower curve around 35

  2. #17
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    Hi Laura...

    Here's the abstract for a paper on the subject:

    http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15371700

    While fusions to S-1 have a poorer outcome, they're often necessary. And, a large percentage of long fusions to L5 will eventually have to be extended to S-1. I think there's often a debate between saving some flexibility or getting it over with instead of waiting for the last disc to go bad.

    I know one person who has two separate long fusions. Her surgeon recommended against it, but she decided to go for it anyway. Unfortunately, she has had a lot of pain, so it was probably not a good idea to do it that way.

    Regards,
    Linda

  3. #18
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    Sounds like a person with a thoracic curve is much better off, in terms of long-term outcomes, than a person with a mainly lumbar curve. That's a very discouraging thought for me.

    Than again you have someone like Karen Ocker -- sixtysomething years old and fused to sacrum -- who seems to be doing great.

    Try as we may, I guess there's just no magic formula to figuring all this out. Too bad....

  4. #19
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    Magic formula...

    Those are exactly my thoughts lately. I guess I'm disappointed with the outcomes of so many scoliosis surgery patients down the line, and knowing all that can happen. I know there are MANY pain free people who have amazing outcomes, and I know that some of us-including myself- have to have surgery, or it would be worse not getting it. What is so frustrating is that it took me years to accept and get the courage to have the surgery, and when I finally did, I never would have expected that revision surgeries and side effects from the surgery could happen, let alone accept them easily. I wish there were better succesful rates(almost 100%, if not all), and not so many bad ones. One of my orthos was so casual when I asked about the non union cases and broken hardware. He said that before, they put a patient in a cast for 6 months to a year without hardware and now that it's not necessary, there is that risk of the hardware breaking. I know that is a LOT of improvement( to not wear a cast), but he doesn't mean to understand all the physical and emotional pain of getting surgery again, especially when one like me has to have the whole incision opened again, and it takes months to recuperate. I'm four months post revision and still have pain and restrictions. Oh well, I have to remind myself that there are worse off people, really.

    Anyways, just needed to vent and share my thoughts today. But I guess the bottom line is scoliosis is a bitch

  5. #20
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    Hi Sweetness...

    I'd like to urge you to not dwell on the negatives. You have at least a 75% chance of having an excellent outcome with no complications. And, even if you do have a complication, it's VERY rarely something that will play a big role in your life.

    It definitely sucks to have scoliosis, but feeling sorry for ourselves doesn't really help. You know that it could be much worse. :-)

    Regards,
    Linda

  6. #21
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    With all due respect, it's hard NOT to dwell on the negatives when you're dealing with multiple surgeries, as Sweetness is. I think she's holding up remarkably well !!

  7. #22
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    It is hard; hopefully having this forum and community makes life a little bit easier. For me it's a great help having all you guys to "talk" to!

    Laura

    p.s.Thanks again for the further info Linda.
    30y/o
    Upper curve around 55
    Lower curve around 35

  8. #23
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    Sorry for the second post... thanks also Linda for putting up the statistic about 75% chance of a reasonable outcome. I must admit that I was also pretty depressed after reading the abstracts in the earlier posts, and the greater context has helped me get some courage back. Laura
    30y/o
    Upper curve around 55
    Lower curve around 35

  9. #24
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    Quote Originally Posted by LindaRacine
    Hi Sweetness...

    I'd like to urge you to not dwell on the negatives. You have at least a 75% chance of having an excellent outcome with no complications. And, even if you do have a complication, it's VERY rarely something that will play a big role in your life.

    It definitely sucks to have scoliosis, but feeling sorry for ourselves doesn't really help. You know that it could be much worse. :-)

    Regards,
    Linda
    I know how it could be worse, and losing one of my friends to cancer last Summer put things in persepective. I did say that in my post, but some days I do get negative thoughts and am saddened by some posts I read here and all the suffering that I endured b/c of scoliosis and still do. Some days are better than others, and my post was mostly about venting, and sharing my experiences and my thoughts(for that day), not feeling sorry for myself. I know I can do that here, and it's nice. But as far as some complications playing a role wether it's big in our lives, I know it could be worse but just in my case having this last surgery done took two years meeting with doctors, getting appointments, healing(as I still am); here in Canada the system works on our patience. And there are some pains that I have been living with for all my life(I have other health issues besides scoliosis), but this broken rod and non union was very hard to live with, and it did play a significant role in my life, as no pain killers helped and just walking, riding in the car, etc were SO painful and difficult. I know some people who get back pains and really hate it, and I know how all of us are brave to live with these types of pains or get these surgeries.

    I know what you meant with your post, and I don't want to discourage anybody. I am a realist though. Like I said I had to have the surgery done anyways. But in my case I would have liked knowing all that COULD happen later. That's just me, maybe for some others it's not the same, and I respect that. But I didn't have the internet then. And to all those who have to get surgeries, of course be postive and try to keep things in perspective. Trust your doctor. I know that the three times I did, I took a leap of faith and felt confident. But we're all human and it's normal to have ups and downs
    Last edited by sweetness514; 04-07-2006 at 01:57 PM.

  10. #25
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    Quote Originally Posted by Singer
    With all due respect, it's hard NOT to dwell on the negatives when you're dealing with multiple surgeries, as Sweetness is. I think she's holding up remarkably well !!
    Wow..thank you so much for that I do get ups and downs, I'm human. All the people I know IRL keep telling me that I am courageous, even when they saw me in the hospital. They compared to some others who had much smaller surgeries who complained a lot and how I kept on getting out of bed and walked until I was exhausted. But I keep saying that I have no choice, so it's not so much courage in that case

    I really like that we can share positives and negative thoughts on this forum, but I know that after being negative for a while a person has no choice to get on with it and look on the bright side, as I try to. I've had a really hard year though, and maybe some of my negative thoughts come from other things as well. Take it easy now
    Last edited by sweetness514; 04-07-2006 at 01:50 PM.

  11. #26
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    Quote Originally Posted by sweetness514
    But in my case I would have liked knowing all that COULD happen later.
    Thankfully, here in the States, anyone undergoing the surgery has to signed an informed consent agreement that lists the potential complications.

    Sweetness, I hope you know that I wasn't trying to make it seem like what you're going through isn't awful. It really is. The good news, however, is that it can be fixed, and I have great hope that you'll be as good as new soon. :-)

    Regards,
    Linda

  12. #27
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    Consent agreement

    Quote Originally Posted by LindaRacine
    Thankfully, here in the States, anyone undergoing the surgery has to signed an informed consent agreement that lists the potential complications.

    Regards,
    Linda
    We do have to sign one, but it's mainly about the risks of blood loss, death, you know what I mean, not post op complications later on down the line(like non unions or DDD, etc). I didn't even know that pseudarthrosis was possible(or what it was for that matter), until I visited forums a year ago. I see a lot of people here posting about going to their post op appointments to see if the doctor sees a change in the curve-even if I know that's not 100% accurate in diagnosing it-and again, I did have post op appointments but didn't know it was about that(as well as other issues, like pain). That's why I'm very skeptical in any type of statistics or even a doctor's opinion, but that's for any type of medical research anyway. All my dcotors told me conflicting opinions on the subject. My ortho told me that he's done surgery on people who didn't have a broken fusion but had a broken rod. Who knows, but getting the most info about it helps.

  13. #28
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    Just to let people know how my surgery went, especially in case anyone now or in the future has mysterious complications like me (esp. older people, more prone to things going wrong - I'm 56).

    The plan was just to check the fusion and take out a cross-link. But when I was opened up, apparently the metalwork (T2-T12) had caused widespread inflammation and swelling which had in turn loosened the screws. No wonder it wasn't getting better (original surgery Nov 04). The surgeon tested every bit of the fusion by stressing each section. Apparently this is how they do it here, to see if the section of spine stays solid (good), or gives under pressure (bad). Luckily the whole of my fusion seemed solid, and he says he had no option but to remove the whole of the unstable metalwork.

    I realise from this site that it is almost inevitable that my back will curve again and I will have to have more surgery. Only hope that is not for a few years. Hopeful point is that under my rigorous back care regime the curves before surgery did not increase at all in the 11 years before surgery, although they were large (77 and 52). But because of them and my forward lean I was getting increasing pain anyway. So I don't regret having the surgery, but it is a long haul.


    The recovery is slow - a month post-op, I'm still having bad pain around the upper back, where apparently the muscles are 'ripped away from their spinal attachments', in the surgeon's charming phrase. But the real downer is that the surgery has greatly exacerbated the mysterious spasms. Between them and the pain I can only stay up 1 3/4 hours before lying down again for an hour, all through the day. Increasing 5 mins a day, and when I came home I could only manage 20 mins, so going in the right direction. The surgeon and pain specialist are now working together to try to diagnose the spasms, which is great, instead of a series of registrars taking the clinics. Current attempt at treatment is to try maximum doses of pregabalin (nerve drug) in case there's a neurological element. Halfway to max dose but no effect on spasms so far. Tried a TENS yesterday, which sent the spasms through the roof! So won't be trying that again. In general, anything makes them worse, even heat and stretching, and only lying down reduces them to their base state. But at least the medics have them in their sights now, rather than just giving them another 3 months....

    Best to all in our endurance tests - continual marathons for some of us,

    Lavinia

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