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  • #46
    Originally posted by rohrer01 View Post
    Awww, I went to his website hoping to see him standing on his head. I was so disappointed! :'(
    LOL!

    Good one.

    But getting back to the topic at hand, were it me, it would be a complete no-brainer to go with an open operation that can stop at L3 versus minimally invasive that stops at L4. Absolutely a no-brainer. The difference in the long term may not be able to be more stark (one operation not including pelvis compared to two operations, the second one including pelvis). That is what might be on the table (no pun intended).
    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."

    Comment


    • #47
      Originally posted by Pooka1 View Post
      LOL!

      Good one.

      But getting back to the topic at hand, were it me, it would be a complete no-brainer to go with an open operation that can stop at L3 versus minimally invasive that stops at L4. Absolutely a no-brainer. The difference in the long term may not be able to be more stark (one operation not including pelvis compared to two operations, the second one including pelvis). That is what might be on the table (no pun intended).
      Thank you all for the great advice
      I am gonna meet now with new surgeons, so starting to make appointments. Will make sure to ask this time all the right questions. Will also ask for stopping at L3 and what the differences about how low the fusion goes.
      I had to clear my mind for a while, been a bit angry with the delays and other things on my mind so I took a time off to 'not' think about everything. I even asked myself if I can skip the surgery and not have it, but was in so much pain last couple weeks, if I could avoid the pain so maybe but as I was hurting, this decision seemed to not be so optional. I still let it go and tried focusing on other things, till I was at the gym and kept hearing the song "when you let it go it will come right back to you", well, ok so before I knew it was approached by couple of interesting inquiries, will update when I have something new going on.. back to appointments now.
      29 years old Female
      45 Degrees Lumbar Scoliosis T12-L4

      Comment


      • #48
        Originally posted by YB1125 View Post
        Thank you all for the great advice
        I am gonna meet now with new surgeons, so starting to make appointments. Will make sure to ask this time all the right questions. Will also ask for stopping at L3 and what the differences about how low the fusion goes.
        I had to clear my mind for a while, been a bit angry with the delays and other things on my mind so I took a time off to 'not' think about everything. I even asked myself if I can skip the surgery and not have it, but was in so much pain last couple weeks, if I could avoid the pain so maybe but as I was hurting, this decision seemed to not be so optional. I still let it go and tried focusing on other things, till I was at the gym and kept hearing the song "when you let it go it will come right back to you", well, ok so before I knew it was approached by couple of interesting inquiries, will update when I have something new going on.. back to appointments now.
        Hey YB,

        It's good to step away and clear the mind.

        You know, I was thinking you may have trouble finding someone to fuse a 45* lumbar if you haven't exhausted all conservative approaches to pain control. As I recall your posts, it seems like you have exhausted them but I think you will be steered towards that first given how relatively small your curve is. In fact you are still technically below the surgical threshold unless there is demonstrated recent progression of a certain magnitude.

        If you can't find another surgeon who thinks they can keep your fusion to L3 then were it me, I would send my radiographs and Dr. Hey's case study to Dr. Hey and any other surgeon and ask about it. If you get fused to L4, it's going to be a countdown to pelvis to use Boachie's words. You are so young yet and I think you might find a surgeon who will stand on his head to keep your fusion at L3 distal (i.e., treat you like a kid).

        Good luck.
        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."

        Comment


        • #49
          I know I'm a little late on this thread, but I just wanted to tell you my experience...

          I'm 26, congenital scoliosis, about 70 degrees at the time of fusion (L2-L4) when I was 7. A few years ago I began to develop lots of pain and in May 2011, had a surgeon do an XLIF (L1-L2). The surgeon was hopeful that an XLIF would treat my pain related to the affected levels, that the "minimally invasive" approach would work for me. A year later, I'm two weeks away from a T5-sacrum fusion, and I really wish I had just had the big surgery a year ago. Obviously, everyone's case is unique, but my XLIF experience has been less than ideal.

          Also, in my case, minimally invasive did not equate to an easy recovery or a less painful one (just sayin'). I just thought I'd offer a little of my story!

          Comment


          • #50
            i had a consult with Dr Anand at Cedars Sinai 2 years ago...
            he does not take my insurance, so i just flew out from east coast to see what he said....
            he offered me surgery to the sacrum, all minimally invasive..approaching from both the back
            and the side...there was no limit to how many levels could be fixed with minimally invasive
            approach...so i would not blame that approach for the fact that you now need more levels
            fused...i might blame the procedure done as too limited for what you needed....
            if you only had the approach from the side, and not posterior as well, maybe that is why you have
            another surgery scheduled...

            best of luck with your next...and last...surgery...

            jess

            Comment


            • #51
              Another Hey case where he attempts to go to L3 instead of L5

              http://drlloydhey.blogspot.com/2008/...ble-curve.html

              It doesn't say if he was able to do it though but he planned to try.

              This morning we straightened up Claire, a 14 yo from Richmond
              Virginia. She had a progressive double curve scoliosis with 58
              degree lower curve, and 40 degree upper curve.
              She came and saw me for a second opinion last month after she was
              scheduled to have scoliosis surgery with fusion down to L5.
              Bending films at Hey Clinic taken that day suggested that the lower
              curve, although large, was nicely flexible at the base, so I was
              hopeful we could spare her 3 rather than 1 lower disc spaces (a BIG
              deal).
              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."

              Comment


              • #52
                Oh I think he did only go to L3 on that other case.

                http://drlloydhey.blogspot.com/2008/...h-painful.html

                It is important to minimize the number of fused segments. I used some preop bending X-Rays to determine that I could preserve the bottom 3 discs, which is much better for Alex in the long run.

                I recently saw a similar curve in a 15 yo girl where they were planning to fuse to L5. Similar bending films revealed that I could fix the curve with a shorter fusion, sparing 3 discs as opposed to only 1 disc. This helps prevent adjacent level failure and maximizes flexibility.
                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."

                Comment


                • #53
                  I am very late to this thread but just wanted to say thAt when I asked my surgeon's patient coordinator for patient referrals I got within two days a good long list of women with fusions that would be very similar to mine, all scoliosis patients. You want someone who does a LOT of these procedures and who wouldn't even think of giving you a referral for someone who didn't even have scoliosis. Just my opinion.
                  Stephanie, age 56
                  Diagnosed age 8
                  Milwaukee brace 9 years, no further treatment, symptom free and clueless until my 40s that curves could progress.
                  Thoracolumbar curve 39 degrees at age 17
                  Now somewhere around 58 degrees thoracic, 70 degrees thoracolumbar
                  Surgeon Dr. Michael S. O'Brien, Baylor's Southwest Scoliosis Center, Dallas TX
                  Bilateral laminectomies at L3 to L4, L4 to L5 and L5 to S1 on April 4, 2012
                  Foramenotomies L3 through S1 in August 2014

                  Comment


                  • #54
                    Update

                    Thank you all for the inputs. I met with another surgeon Dr William Smith. He does Xlif as well. He suggested fusion from T10-L3 without rods. Brace for 2-3 months afterwards. He said this was from his initial impression. There was an older lady at office (56) which had same procedure just a lot lower than L3, no rods, she said she is doing wonderful. I asked him and he said he operate on scoliosis corrections 2-5 times per week and he is well considered/respected in the Minimally invasive surgery world. He is located in Las Vegas. I asked for referrals, it was only couple of days ago- so waiting. This doctor wants to fuse 2 more levels compared to the previous one I have already discussed in this thread. (T10-L3 compared to L1-L3/4). He did support keeping physically active after surgery for best long term results which I liked, I think every surgeon should highlight this!!

                    As I said before I am meeting with a variety of them and will question next xlif surgeons about the rods as well.. and reasons and outcomes.. etc

                    Meeting with different well considered Surgeons, afterwards will do my homework on what they all said..
                    Last edited by YB1125; 05-26-2012, 10:17 PM.
                    29 years old Female
                    45 Degrees Lumbar Scoliosis T12-L4

                    Comment


                    • #55
                      i thought people without rods end up losing the correction and having revision surgery....
                      there are people on forum who have reported exactly that experience....
                      i would get 2 more opinions before going ahed with fusion without rods...
                      what is the reason for it...????

                      jess

                      Comment


                      • #56
                        no rods?

                        Hi YB,

                        I guess I am really confused by what your new surgeon told you, because it just doesn't make sense. If he is not using rods, is he saying that he can fuse T10-L3 with all XLIF's? Because without some type of fixation, a brace for 2-3 months is not enough to hold the area still to ensure healing and solid fusion. I also thought XLIF is only for lumbar fusion.

                        Is he a SRS surgeon (Scoliosis Research Society) who regularly does scoliosis surgeries? Again, the part about not using any rods does not make any sense.

                        I am concerned for you, and would hate to see you make a big mistake with your back by using an unsuitable surgeon. Please continue to get more opinions.
                        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

                        Comment


                        • #57
                          UPDATE** Surprising changes!

                          I met with a couple other Doctors in California.

                          I didn't expect to hear the info I heard from the surgeons, they both explained me things in different ways, I think I may have some clarity on some things we discussed here..

                          First Doctor, Dr Mundis from San Diego, I thought had the best assistant/nurse ever. She was so knowledgeable and was so detailed with everything she did, I really like her and that helped a lot, as I felt I was in good hands. They did a bunch of measurements other surgeon Offices didn't do. Dr Mundis was very friendly and easy to talk to. He looked at my MRI and Xrays and had 2 students with him in the room and the wonderful nurse as well.
                          Dr Mundis explained things to me hands on with details too. He said my curve actually measured at 48 degrees and it showed flexibility to 2 degrees (previous surgeon came up with 45 curve and 6.6 degree for flexibility). He actually suggested a traditional scoliosis surgery T11-L3/4. He gave me few reasons why Xlif won't work for me;
                          He said I am young and healthy and my body will have the ability to recover well, in the long run 10-15 years from now I will benefit from traditional surgery better as it have proven to work (sounded to me like xlif is very new). He said surgery will help stop progression overall. He said also that with Xlif you cannot rotate the vertebrates, therefor I will have better appearance with traditional as rotation can be done, he thought I was young enough for it to be a benefit too. He also showed me why my spine cannot be fixed to 0 degrees even if it is flexible because he will have to go below L4 and that was not recommended. He also said Xlif works better on older people because their scoliosis have different needs, that is why I won't find referrals my age. He said the benefit of Xlif is at the short term only as recovery is faster at first, but a year later after either surgery I would recover the same. Also he said I won't need physical therapy as he think I am motivated enough to do things on my own.

                          Second Surgeon, Dr Terrence Kim in Los Angeles, was very conservative, he said no surgery is never recommended, he wanted to keep it on the safe side of observing progression. He said I should wait till new technology becomes available. I somehow convinced him that my body already shows signs of future issues because my lack of ability to sit straight, than he ordered new x rays and brought me in the room with his partner Dr Pashman I have originally approached who he works with, he felt obligated to include him. He measured my old x rays at 35 degrees curve, other surgeons measured same x rays at 45-48 and the new x rays he ordered that day measured at 37 degree curve. I am not sure why he came with such different results compared to the other surgeons, he said it was normal. Regardless, he was very conservative. Him and Dr Pashman discussed surgery with me in the room, their reasons of why xlif won't work on me were: I have a unique curve as a combination of Lumbar and Thoracic, Xlif is for Lumbar access only, this was when they offered a combination of Traditional and minimally invasive, a posterior spinal fusion T9-L4. They didn't mention anything about rotation. They said I have a unique age and curve. Most patients operate when teenagers or usually over 50, they said I am experiencing unusual pain for my age group which usually don't happen till later age, they said most of the ones my age who didn't have surgery before their 20th won't do it till their probably over 50 when pain progresses.. I broke down in tears at this Doctor's office once I was left by myself, I finally let my frustration with the whole process out. It felt good to finally do it..

                          A couple of days later, I received one patient referral from each surgeon office I visited. I am now in the stage of contacting the referrals. I think I got a lot of thinking to do!!!

                          Also I never heard from Dr William Smith in Las Vegas. The one who promised xlif without rods, I received zero referrals 4 weeks later. I know he does a lot of surgeries around the world, sounded like it may be 3rd world countries. I think he could be using those people as a test market since they can't really sue him if anything goes wrong. I am not saying it cannot be done or that he doesn't get good results but it is obviously very new to the market. I wish I was born 20 years later!!
                          Last edited by YB1125; 05-26-2012, 10:05 PM.
                          29 years old Female
                          45 Degrees Lumbar Scoliosis T12-L4

                          Comment


                          • #58
                            is there a reason you did not name the doctors...?

                            if you want to wish for something...NOT having scoli comes to mind...as opposed
                            to being born with it 20 years from now...

                            jess

                            Comment


                            • #59
                              Originally posted by jrnyc View Post
                              is there a reason you did not name the doctors...?

                              if you want to wish for something...NOT having scoli comes to mind...as opposed
                              to being born with it 20 years from now...

                              jess
                              Hi Jess, Plesae look up at my previous post, I added the names and locations of the Surgeons in the post itself.


                              Yep, NOT having scoliosis would be better. So many things to wish for, unfortunately the past cannot be changed only an optimistic outlook of the future..
                              29 years old Female
                              45 Degrees Lumbar Scoliosis T12-L4

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