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  • #31
    thanks, Linda, for the help in mental recall....
    we used to call this Lyme brain fog...
    now i call it getting old-er (keeping the -er)

    jess

    Comment


    • #32
      YB mentioned earlier that the surgeon also mentioned that some short rods and screws would be put in from the back, but it seems that YB has glossed over that fact to herself (that is an open posterior) and is focusing on the XLIF thing. So I don't think her non-scoliosis-specialist surgeon is planning a stand alone XLIF, but YB seems to be focusing just on that, which is two separate incisions, one on the side and one on the back.

      Also YB, did you discuss with your surgeon the risks over time to your lowest lumbar discs? Fusing L1-L4 puts the remaining L5/S1 disc in jeopardy of wearing eventually, especially at the young age of 29, so again this is not just a once-and-done surgery you are considering. Please consider this and get more opinions from qualified scoliosis specialists.
      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


      • #33
        Thank You all for the support, that was very appreciated and much needed right now. before I respond to you all, I have to update.. I finally received an email from my Doctor CC'd to his assistant too, asking if I got everything addressed? Kind of silly thing to say as a first respond after the long email I sent him and his assistant about what kind of patient referral I needed. I said back "no I haven't and also confused of why I ask for lumbar scoliosis correction patients and keep receiving patients with other conditions..", his response to this gave it all, it's not that I didn't see it coming either but a part of me was sad to hear as it was the final confirmation I was waiting on, he last response: "I don't think I have an exact profile of what ur looking for. I'm sorry"

        I made sure not to spend the day alone as I knew I would get depressed and angry. I was angry that I asked his assistant(different assistant) before I even met him about his experience with Scoliosis patients and I was told he had experience, than I bought a flight ticket, met with him, investigated him for an hour and a half and asked him so many questions about his experiences with Scoliosis corrections and now he obviously had maybe zero personal experiences. His brother is an SRS Doctor, maybe he did surgeries with him but not on his own obviously.

        I know and I heard about Dr Anand, he doesn't take my Health Insurance, neither my Doctor's brother or many other known Doctors out there. As big as my city is I found no great Doctors here, my interest would be to find a Doctor in Southern California.
        I am not giving up on a minimally Invasive Surgery though, it make total sense that things would advance and new technics would come out, we must evolve somehow, just need to find the right Doctor with plenty of experience, who have put it to the test many times.
        I am not in a rush and not planning on making hasty decisions, I was just expressing my frustration, I am human and have feelings too.
        Last edited by YB1125; 03-30-2012, 01:52 AM.
        29 years old Female
        45 Degrees Lumbar Scoliosis T12-L4

        Comment


        • #34
          Originally posted by leahdragonfly View Post
          YB mentioned earlier that the surgeon also mentioned that some short rods and screws would be put in from the back, but it seems that YB has glossed over that fact to herself (that is an open posterior) and is focusing on the XLIF thing. So I don't think her non-scoliosis-specialist surgeon is planning a stand alone XLIF, but YB seems to be focusing just on that, which is two separate incisions, one on the side and one on the back.

          Also YB, did you discuss with your surgeon the risks over time to your lowest lumbar discs? Fusing L1-L4 puts the remaining L5/S1 disc in jeopardy of wearing eventually, especially at the young age of 29, so again this is not just a once-and-done surgery you are considering. Please consider this and get more opinions from qualified scoliosis specialists.
          Yes, Xlif would be 2 incisions from the side and few small ones on the back with 2 rods and 4 screws. This is what the Xlif videos shows too, sorry I didnt emphasize it.

          Yes, there is always a chance of deterioration of L5/S1 over time, my Doctor told me that too. His point was, why to fuse more when you don't need to? because that can create other damage too, you can always add more fuses if it comes down to it later on. The Doctor said L5/S1 were stable/neutral Vertebrates (stable means falling on the plumb line, and neutral means having no rotation.) Please see attachments I added here to view the technic..

          My thought on that was, my body is already out of balance with the scoliosis, there is already pressure on different parts of it, it's affecting my neck bones, my knee, hips. all those can go bad over time too. I can't sit straight easily so it makes me hunch- this can cause future problems and deformities over time too. From the research I have done, it seemed that the ones who are most active regularly and keep healthy body and good muscle structure will more likely to have better results and better outcome over time with Traditional surgery and I am sure minimally invasive too.. Also deterioration can happen with traditional surgery as well.

          I am still researching Xlif though and will discuss this more into depth with future surgeons I will meet.
          Attached Files
          29 years old Female
          45 Degrees Lumbar Scoliosis T12-L4

          Comment


          • #35
            Originally posted by jrnyc View Post
            there are treatments that can help with pain short of surgery...
            i do not remember you mentionintg any that you have tried...??
            i also do not remember reading where you live...
            big cities usually have many surgeons with a lot of experience...it is pretty easy
            to find an experienced scoli surgeon in a large city...
            of course, there are many on forum who have had to travel a ways to do just that...

            i hope you get at least 2 more opinions from top scoli surgeons before you make a decision...
            i have my doubts about which surgeon would operate on a curve of 45 degrees,
            without suggesting pain treatments first...
            and even then, suggesting not doing anything right away....
            i can very much sympathize, empathize with your pain, as i have severe spinal pain...
            but the surgery is not ALWAYS the answer, is not always successful, and is completely permanent...
            nothing i ever heard of naturally straightens the spine, before or after surgery...
            i cannot imagine who gave you such misinformation on XLIF!!
            i consulted with Dr Anand in LA, and he is a major believer in minimally invasive lumbar...
            but he never ever said anything like that...nor would any surgeon who knows the procedure!

            best of luck...
            jess
            For your questions, yes, I have explored many alternative options, have spent thousands of Dollars on Chiropractors and Physical Therapy, which did not make any difference, if anything it made it worse. I work out about 4 times a week so that makes me feel better, I am very strong physically. The relief is only temporary as the pain will kick back in eventually, the biggest thing is that I can’t sit for long, my work require me to sit for hours sometimes and be sure those are my worse days. It's affecting my posture too and creating other problems because of it.

            XLIF don't need a long fusion as I was explained, they put little bone graft in square shape between the vertebrates, that straightens out the affected Vertebrates and the rest of the unaffected spine will straighten on it's own as a result, as it is only curved because of the main Vertebrates which are out of place and causing rest of curve, if that make sense..

            No, there are no guarantees in life for anything. 2 people can open same kind of business, put same effort, one will be successful and the other won't. What make 2 patients who have same exact problem at same spot and treated by same Doctor have 2 different outcomes? this must come from within us, we must hold some kind of power in directing things, maybe subconsciously. All of us with Scoliosis, it is a result of something which held within us as I believe, this needs to be unveiled and addressed. We are holding some kind of unsettled energy that resulted in our spines's deformation. I see this journey as a spiritual one too, healing journey.


            p.s.
            No decisions are risky ones, as long as enough thought and research was put into them.
            29 years old Female
            45 Degrees Lumbar Scoliosis T12-L4

            Comment


            • #36
              Originally posted by YB1125 View Post
              Yes, there is always a chance of deterioration of L5/S1 over time, my Doctor told me that too. His point was, why to fuse more when you don't need to? because that can create other damage too, you can always add more fuses if it comes down to it later on. The Doctor said L5/S1 were stable/neutral Vertebrates (stable means falling on the plumb line, and neutral means having no rotation.)
              You are still relatively young and in good shape from what I understand. They seem to be treating you like a kid in term of not wanting to fuse lower than L4 which is good. In an older patient they may have just suggested going to the sacrum, I don't know. You may get away with not needed a distal extension for years and years if they can straighten and balance you. I don't know... they know about these things. Maybe the short length of the proposed fusion will not put you in much danger of needing a distal extension. That would be very good. Maybe it's mainly the long fusions ending at L4 that wear out the lower discs. Who knows. If you wait, the curve might involve more of the lumbar and you might not have so many years with an unfused L4-sacrum. I would be asking what exactly determines how fast the lowest two discs wear out under a fusion ending at L4.

              I am not a patient; I am a parent. But I can tell you I would be asking those questions over and over until I got actual answers from a number of surgeons were it my kids. It alarms me to see what apparently isn't asked of surgeons in some of these testimonials. Maybe they are asking and the testimonials are just incomplete.

              You have probably asked these or similar questions.
              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


              • #37
                Hi YB,

                Since you are looking for a surgeon in SoCal, what about Dr Pashman at Cedars-Sinai? He is very well regarded I believe, and his website says he does more scoliosis surgery than anyone else on the west coast. He has a website with at least 50-60 case examples with x-rays, and he also does phone consults for $150 if you send in your x-rays. Maybe that would be an option. Here is a link, and you can check out his scoliosis pages and cases. I learned a ton by reading through each of the case studies (it takes a long time!).

                We of course are all human here, and we all have fears and feelings. Many of us here have been dealing with scoliosis in our lives for decades, so we are just trying to share our experiences with you so you have the best outcome.

                Good luck,
                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


                • #38
                  "....something from within us, we must hold some kind of power in directing things, maybe subconsciously. All of us with Scoliosis, it is a result of something which held within us as I believe, this needs to be unveiled and addressed. We are holding some kind of unsettled energy that resulted in our spines's deformation. I see this journey as a spiritual one too, healing journey."

                  i do not know about anything subconcious directing anything or any unsettled energy resulting in spinal deformity...
                  that does not sound like anything that makes sense to me...
                  i do know my 42 thoracic, 70 lumbar degree curves, degerative disc disease, listhesis, spinal stenosis, spinal arthritis, hypokyphosis, severe rotation, and a few other conditions are what is making my spine crooked and causing me extreme
                  pain...nothing in my subconcious is doing that...

                  i was not referring to chiro or PT...i was thinking more along the lines of epidural injections, nerve ablation, facet
                  block, etc...for alternative tx to surgery....

                  there are some great scoli surgeons in both southern and northern CA...if it is convenient for you to go to CA, you
                  should have a choice of very experienced surgeons, and surely some will take your insurance...
                  Anand didn't take mine either...i paid cash for consult and flew 6000 miles round trip, just to see what he had to
                  say about minimally invasive surgery for lumbar spine....to me, it was worth the trip...

                  good luck with whatever you decide
                  jess...& Sparky

                  Comment


                  • #39
                    Originally posted by jrnyc View Post
                    YB wrote: "....something from within us, we must hold some kind of power in directing things, maybe subconsciously. All of us with Scoliosis, it is a result of something which held within us as I believe, this needs to be unveiled and addressed. We are holding some kind of unsettled energy that resulted in our spines's deformation. I see this journey as a spiritual one too, healing journey."

                    i do not know about anything subconcious directing anything or any unsettled energy resulting in spinal deformity...
                    that does not sound like anything that makes sense to me...
                    i do know my 42 thoracic, 70 lumbar degree curves, degerative disc disease, listhesis, spinal stenosis, spinal arthritis, hypokyphosis, severe rotation, and a few other conditions are what is making my spine crooked and causing me extreme
                    pain...nothing in my subconcious is doing that...
                    Well she is correct only in the case of the exquisitely rare "hysterical" form of scoliosis.

                    The rest of the cases are widely acknowledged to likely be due to multifactorial, polygenetic etiologies. You can't think or emote your way into or out of those curves.

                    Nothing spooky. There never is.
                    Last edited by Pooka1; 03-31-2012, 11:58 AM.
                    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


                    • #40
                      Originally posted by Pooka1 View Post
                      You are still relatively young and in good shape from what I understand. They seem to be treating you like a kid in term of not wanting to fuse lower than L4 which is good. In an older patient they may have just suggested going to the sacrum, I don't know. You may get away with not needed a distal extension for years and years if they can straighten and balance you. I don't know... they know about these things. Maybe the short length of the proposed fusion will not put you in much danger of needing a distal extension. That would be very good. Maybe it's mainly the long fusions ending at L4 that wear out the lower discs. Who knows. If you wait, the curve might involve more of the lumbar and you might not have so many years with an unfused L4-sacrum. I would be asking what exactly determines how fast the lowest two discs wear out under a fusion ending at L4.

                      I am not a patient; I am a parent. But I can tell you I would be asking those questions over and over until I got actual answers from a number of surgeons were it my kids. It alarms me to see what apparently isn't asked of surgeons in some of these testimonials. Maybe they are asking and the testimonials are just incomplete.

                      You have probably asked these or similar questions.
                      Thank you for the important notes. Didn't know there was a different in levels operated on with the age. It's a great question to ask a surgeon.. about the timing to the wearing out of discs below level L4. My doctor was actually planning on maybe getting away with L1-L3. I am not thinking far into the future, I probably should, or maybe didn't find it valid to worry about things that 'may' happen, but maybe its good to know those things. I knew this could happen and my intuition told me to strengthen the muscles around there, if there is muscles to support the bones there is less pressure on bones. I really put extra effort at the gym..
                      29 years old Female
                      45 Degrees Lumbar Scoliosis T12-L4

                      Comment


                      • #41
                        Originally posted by leahdragonfly View Post
                        Hi YB,

                        Since you are looking for a surgeon in SoCal, what about Dr Pashman at Cedars-Sinai? He is very well regarded I believe, and his website says he does more scoliosis surgery than anyone else on the west coast. He has a website with at least 50-60 case examples with x-rays, and he also does phone consults for $150 if you send in your x-rays. Maybe that would be an option. Here is a link, and you can check out his scoliosis pages and cases. I learned a ton by reading through each of the case studies (it takes a long time!).

                        We of course are all human here, and we all have fears and feelings. Many of us here have been dealing with scoliosis in our lives for decades, so we are just trying to share our experiences with you so you have the best outcome.

                        Good luck,
                        Thank you, your sweet words are very appreciated. I am gonna put together all the doctors everyone recommended me here and research and contact them.. Lots more homework ahead..
                        29 years old Female
                        45 Degrees Lumbar Scoliosis T12-L4

                        Comment


                        • #42
                          Originally posted by YB1125 View Post
                          Thank you for the important notes. Didn't know there was a different in levels operated on with the age. It's a great question to ask a surgeon.. about the timing to the wearing out of discs below level L4. My doctor was actually planning on maybe getting away with L1-L3. I am not thinking far into the future, I probably should, or maybe didn't find it valid to worry about things that 'may' happen, but maybe its good to know those things. I knew this could happen and my intuition told me to strengthen the muscles around there, if there is muscles to support the bones there is less pressure on bones. I really put extra effort at the gym..
                          It's a shame your efforts at PT did not help enough with pain. If they did and you weren't progressing, you wouldn't need surgery.

                          If you can stay at L3 or above you may never need a distal extension. The fact that they mentioned trying I think may be due to you being so young relative to many other adult patients. You may be on some cusp of adolescent-adult in terms of surgical decisions and what gets weighed against what. I have noticed that kids with what appear to be frank lumbar curves are mostly only fused to L3 regardless of other surgical indicators. I can think of only 2 kids on this forum who were fused to L4. The surgeons seem loath to go below L3 because it increases the chances of needing a fusion to sacrum with each level (on average).

                          We have a case where a surgeon operated below the standard surgical threshold on a thoracolumbar curve on a kid for the expressed purpose of saving levels in the lumbar. I would ask about whether waiting affects your chances of stopping as high as possible. If he thinks you can strengthen the muscle enough to allow ending at L3 then that is the way to go were it my kid (not that you are 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


                          • #43
                            link to Dr Pashman's site

                            Hi YB,

                            here is the link I mentioned above for Dr Pashman at Cedars-Sinai. http://www.espine.com/

                            There is a link on the left of his page for "Adult Scoliosis Cases."

                            Good luck,
                            Last edited by leahdragonfly; 04-01-2012, 09:59 AM.
                            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


                            • #44
                              YB,

                              Check out this case... Dr. Hey stood on his head to de-rotate and level the lower lumbar vertebra so he could stop the fusion at L3 in a kid...

                              http://drlloydhey.blogspot.com/2011/...acolumbar.html

                              Since we caught It early, his curve was more flexible. We got an awesome correction, and was able to keep fusion Shorter, down to L3 as opposed to L4 by working hard do derotate that lumbar segment, and osteotomizing the lower segments to free them up for better correction. This is great news for Evan, since he will have 3 movable discs at bottom as opposed to 2.
                              You could ask Pashman or other surgeons if you can possibly get away with doing these types of procedures to be able to end your fusion at L3. They don't sound minimally invasive but you may have a choice between one open operation in your lifetime (stopping at L3) and two operations, one minimal stopping at L4 which counts down to fusion to pelvis (minimal or open) in a few years.
                              Last edited by Pooka1; 04-03-2012, 06:49 AM.
                              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


                              • #45
                                Originally posted by Pooka1 View Post
                                YB,

                                Check out this case... Dr. Hey stood on his head to de-rotate and level the lower lumbar vertebra so he could stop the fusion at L3 in a kid...
                                Awww, I went to his website hoping to see him standing on his head. I was so disappointed! :'(
                                Be happy!
                                We don't know what tomorrow brings,
                                but we are alive today!

                                Comment

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