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19 Year Old Male. Scoliosis Progressing.

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  • Originally posted by Elisa View Post
    Had to look it up myself Melissa. Found this article that explains it pretty well.

    http://www.spine-health.com/treatmen...n-xlif-surgery
    Thanks Eliza
    Melissa

    Fused from C2 - sacrum 7/2011

    April 21, 2020- another broken rod surgery

    Comment


    • Originally posted by CHRIS WBS View Post
      I would have to agree. While I have a fusion to the sacrum and have no problem with that, I’m at least 40 years older than you. I think a fusion to the sacrum could over time put stress on the pelvic bones and hips and possibly the legs since there are no more vertebrae below it to take the stress. If I were as young as you, I would definitely not want to be fused to the sacrum if it could be avoided.
      Yeah. I'm relatively certain down the road when I'm over 40, I'll get fused down to the Sacrum. My dad is against the L4, cause he's worried L5 will go and then I'll need to extend it sooner than he wants, and then only have S1 disc and not have much time before I'm forced to do S1. He gave me a little idea, saying why don't we remove the hardware, add new hardware still from T9-L3, and remove the discs to get more flexibility and try to straighten out the spine without going to L4. But the removal of hardware and adding new hardware isn't a walk in the park and idk how straight the spine will get without extending it past L3. But it's an idea.

      Comment


      • hi John
        if i were you, i'd be going crazy by now. going back and forth
        with the choices...trying to make a decision...
        just me, but i think ultimately, i would go with the choice Dr Bederman recommended...
        figuring he would know the risks and benefits of each option better than anyone else....
        do you think you will have the surgery with Bederman....?
        if not, will your surgeon discuss the options with Dr B.,
        or would that offend his ego...?
        i have experienced some doctors who seemed to be all ego...the very idea of my seeing another surgeon seemed to offend them...but the good doctors, the best surgeons, were
        fine with my going to see others and get other opinions...

        jess

        Comment


        • Trust me, I am going crazy. I'm talking to Bederman about what this surgeon has said and it's still not a clear choice. It's very difficult. I asked him what the risks are if I do the big surgery with the surgeons up here and he hasn't replied yet. If I do the XLIF, yes I'm going to do the surgery with Bederman, but idk if I want to the do the XLIF, that is the issue. I don't know if my surgeon will discuss issues, haven't brought that up, but I did tell the surgeon yesterday about Bederman in LA regarding XLIF. And I'm talking to Bederman about the local guys, so I'm kind of discussing the info within all three surgeons, so I don't see the need to have them talk. Probably both too busy. They all recommend more opinions and try to just be as helpful as possible, so they are all good.

          There is another issue as well, as if the issues I'm having weren't enough. This issue is regarding my insurance. We're having some family issues right now and at the moment, it looks like I need to do the surgery before 2012. I might not be covered in 2012, so that can cause some problems. If I do the XLIF and need more surgery, I'm screwed. But if I do the big surgery, and have complications or what not, I'm still screwed. So it's just bad however you want to look at it.

          Comment


          • John, as you know my daughter is going through a very simular situation as you are. How did your doctors determine that you have non fusion from your previous surgery? My daughter has had a few opinions and a couple surgeons have said she may have non fusion in her last 2 levels which would be L-1 and L-2 but they cannot be sure.. She had facet joint injections at those levels as a diagnostic tool to see if the pain was relieved, but they did nothing. A couple of surgeons have said they think the levels are fused, but cannot be sure. As I have told you in a PM, she was scheduled for surgery on October 14th.. The surgeon was going to do anterior and take out her existing hardware (she had anterior the first time) and replace it with new because he said he cannot be sure that her hardware is not the cause of her pain.. then he was going to flip her over and do posterior surgery, fusing T-9 to L-4. (Her first surgery was anterior only T-10 to L-2) After her first surgery she appeared very straight, but now her left hip sticks out again (like it did before surgery) and she does not look so straight. The surgeon said he can make her straight again and he hopes that since her spine is not aligned (and perhaps the last 2 levels are not fused, but he cannot be sure) that it will relive her pain, but he also has said their is no guarantee and all he can say is she will be in less pain, more pain or the same, but he is hoping for less pain. Those odds are not very good, but that is what everyone says...of course, no one will guarantee she will be out of pain. Her first surgery was in 2006 so she is getting really sick of the pain by now and wanted to just take her chances and do it.. so back in June we scheduled her surgery for Oct. 14th.. she didn't take any classes for the fall semester in anticipation of the surgery...

            Now that the date has been getting closer, she is getting really anxious about it and wanted more opinions. It is hard to get appts, with surgeons quickly, but we do have one next week with a very highly recommeded neurosurgeon that does revision here locally. In the meantime we went to her pain doctor and asked him for some advice regarding the surgery. He told her to get more opinions and an updated MRI and suggested she not do the surgery just yet as is not reversable and a huge surgery to go through ..the anterior/posterior/ removal of hardware, etc. He says that it has been his experience that surgery like she was having had about a 50/50 result, with 50% getting pain relief and 50% ending up in worse pain. So we have now cancelled her Oct. 14th surgery, she signed up for school and we are, like you, looking for more opinions to see what her options are.. The problem is, no one knows exactly what is causing her pain. If they could figure that out, then they would know if surgery would fix it.

            She had a steroid epidural 2 weeks ago which did not help at all so far, and if was going to it should have by now.. she is very discouraged.

            I was just wondering if any of the surgeons you have seen have been able to pinpoint the cause of your pain and can they see on the x-rays that you have non-fusion? On her x-rays we get about half that say she is fused and half that say she is not...all looking at the same x-rays, MRI's and CT's. That is what makes it so hard to make an educated decison as to what to do.

            No one has offered her any XLIF type surgery...as of yet

            Comment


            • John,

              I also wanted to ask you, did you get the injections you were going to get, and did they help with the pain at all?

              Lori

              Comment


              • I did get injections. I got a minor relief in the deep down bone pain on the right side. But I felt a different type of pain from the injections after. Plus, only discs L1-L2 and L3-L4 were successful, the L2-L3 wasn't successfully injected. That is the disc with the biggest sign of pseudarthrosis. I don't know if the minor relief was from the injection in L1-L2, or the L3-L4, if it's the top, then it implies non union pain, if it's the bottom, it implies asymmetrical loading causing facet joint under harder to cause pain.

                If your daughters hardware looks fine, then I don't see the need to extend 2 levels, remove all hardware, and then do posterior/anterior surgery. Ask about the XLIF, regarding to just fuse her spine without jumping through hopes and extending and doing all that. Unless her problem is like mine, where the placement of the hardware might be a possibility for my pain. X-Rays don't really show bone fusion around spine, it's hard, the CT is better. I also got the 50/50 from one of the surgeons. But his partner, that helps in the OR, said it is very likely to work out, and has had similar patients do this surgery with the discs and what not, and go back to activities. He said the removal of discs and adding implants and all that will increase the chance of fusion too. So everything is good, but it's just the extending that is worrying me.

                Looking at my X-Rays right after surgery and now, I've noticed it's gotten worse in the lumbar area. Just think about it, there is no fusion from L1-S1. I want to see if the surgeon can replace all the hardware, remove the 2 L1-L3 discs, try to balance it as much as possible, and then just stay at L3. I think if he says it might work, it's my safest bet right now. More than XLIF or the big surgery. It will take advantage of the failed fusion in those 2 discs, get flexibility, and give me L4-L5-S1 to support underneath. It doesn't need to look perfect, but I really do think the fact it wasn't fused for almost 2 years, caused it to look worse/curve and cause some pain in the facets. Monday is the next appointment. Let's see what he says when I bring that up.
                John

                Comment


                • i have never met a pain management doctor who was in favor of
                  spinal surgery...unless the doctor was also a surgeon.....the ones who are only pain
                  management (and who do not do spinal surgery) that i have been to have always been
                  against having fusion surgery...always! i think they are pretty biased against it...

                  jess

                  Comment


                  • Well, after thinking and trying to figure out what to do. The idea of doing the best of both worlds popped up in my head. Why not remove the discs and fuse as if it was an XLIF, through the back. And at the same time, remove the hardware, and replace it with proper Titanium hardware and straighten out the spine using the extra flexibility from L1-L3. This would be to try to straighten it out as best as possible, without extending to L4. I don't care if it's not perfect, just looking at X-Ray's right after surgery, you can tell the disc angle looks better than it is now. Just imagine, L1-S1 hasn't been fused for nearly 1 year and 9 months, of course it's going to progress and get worse over time. Plus, the removal of discs can help with flexibility, so I might get a better correction than right after the first surgery. So I'll be fused, and straightened, without extending to L4.

                    After telling Bederman this, he agreed that maybe going to L4 wasn't a bad idea. And he would of most likely done this during the first surgery. He said if it showed progressing, than going down to L4 sounds like the right idea. So that made me a bit more relaxed, because there is an agreement among the surgeons. But I still don't want to go down to L4 just in case. Tell me if you can see the spine progressing under the hardware, look at the angle of L4.

                    http://i30.photobucket.com/albums/c3...n148/final.jpg

                    Comment


                    • So many choices. Yes, you must be driving yourself CrAzY trying to figure out which direction to take. I know for me and my son there really was no decisions to be made which was easy: immediate posterior release, halo traction and then fusion then home to recover. I'm thinking maybe b/c yours is revision surgery there are so many differing opinions and options though. I'm not so good at reading x-rays but do notice that in the third pic your spine looks slightly more angled than the second pic but am wondering if that could be a 'settling'? I'm sure Linda would know more b/c she looks at a lot of x-rays in her line of work. I am following your story closely John and am anxiously awaiting the decision you and your surgeon (whoever that is) makes.
                      Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
                      Halo Traction & 1st. surgery on March 22nd. 2011
                      Spinal Fusion on April 19th. 2011

                      Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



                      http://tinyurl.com/Elias-Before
                      http://tinyurl.com/Elias-After

                      Comment


                      • Thanks Elisa. I hope everything works out. Got my last and final doctors appointment with the local surgeon, will discuss the idea regarding staying at L3, and still trying to straight everything out. Will report back tomorrow afternoon. If it doesn't go according to plan, looks like I'll need to get more opinions and it'll take longer than I thought.

                        I also got another surgeon giving me his opinion through email, so let's see what happens.

                        Comment


                        • hey John
                          when you do decide on the option...will you have the surgery w/Bederman or the
                          other surgeon closer to home?
                          is L4 (vs L3) a big concern for you...? i can see why going to S1 would be a big
                          worry, but is it a worry as well to go to L4...?

                          best of luck with your doctor visit tomorrow....and with your decision!

                          jess

                          Comment


                          • Originally posted by jrnyc View Post
                            hey John
                            when you do decide on the option...will you have the surgery w/Bederman or the
                            other surgeon closer to home?
                            is L4 (vs L3) a big concern for you...? i can see why going to S1 would be a big
                            worry, but is it a worry as well to go to L4...?

                            best of luck with your doctor visit tomorrow....and with your decision!

                            jess
                            I'm not sure. I have no idea if the surgeon will even like the idea of sticking to L3. I want to preserve L4-L5-S1 as long as possible, because down the road I can extend if there are problems. But I don't want to extend to L4 now, and in 5 years have to extend to L5, and shortly after that, extend to S1. So, the way I see it is, the less discs I have underneath, the sooner my next surgery will be. So I want to save as many discs as possible, so I have longer road ahead of me. I can extend, I'm not 100% against that idea, but from what I've been told and what I see, L3 is a safer bet than L4. Basically between XLIF and extending to L4, combining both and taking out both risks, I get the replacement of hardware, but stay till L3, balance it out, and do XLIF from the back approach. So now, I don't have risks of extending, and risk of "losing flexiblity" down the road cause I fused them, I'll do both at the same time.

                            Comment


                            • John,

                              when is your appt with Dr Bederman?

                              Melissa
                              Melissa

                              Fused from C2 - sacrum 7/2011

                              April 21, 2020- another broken rod surgery

                              Comment


                              • I had to post pone it from 30th, to October something. Depending on tickets, I'm looking at the 12th. Will book the flight today after this appointment.

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