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  • So glad I found this site!

    I have been reading your posts for a couple of months now and have learned so much about Scoliosis.
    I have had upper and lower back pain for years and have always been told this was caused by arthritis. The last few years I was having more and more difficulties walking. Nov. 2012 my doctor send me for a cat scan and the results showed I have 3 herniated disks. He told me to try a Physio therapist or chiropractor for relief as there was nothing he could do for me. I also go to aqua size which seems to help more then anything else.
    I asked my doctor to refer me to a spine specialist, he was reluctant to do so as he did not think they could do anything for me. You will need a MRI first and then we will see. I was then send to a Neurosurgeon in Mississauga (Toronto area). He said you are very Scoliotic, the MRI shows rotoscoliosis, subluxation and spinal stenosis.
    He said I would need extensive instrumental spinal fusion and decompression.
    Then he said he would not be able to do this surgery and made an appt. with his colleague also a neurosurgeon.
    This was the first time I found out I had scoliosis.
    The second surgeon agreed with the first and said because of the significant scoliosis he could also not operate on me and send me to third doctor.
    He is a scoliosis spine specialist, my appt. with him is Oct. 8th.
    I have since been reading a lot also purchase David Wolpert's book as suggested on several posts.
    I wondered if there were any members from the Toronto area. I live in Muskoka about 3 hours north of Toronto.
    Thanks for all your help for now, it has been an eye opener reading on this site.
    Marianne
    rotoscoliosis, subluxation and spinal stenosis
    Surgery April 15, 2015 at age 67
    T11-L5
    Decompression with multiple discectomies
    Concord cages @ L2-3, L3-4, L4-5
    Osteotomies and local bone grafting
    Revision Feb.22, 2018
    Replaced rods
    Took out L5 disk to free up nerves
    Used BPM to help with fusing
    Fused T10-S1 with screws in pelvis

  • #2
    Hi Marianne!

    I've been on this site for just a few months & I'm finding a wealth of information, too! I'm going back and reading lots of the old threads, too.

    Peg
    Peg
    61 yrs old
    75 degree lumbar curve with thoracic kyphosis
    T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
    Working on healing in Columbus, Ohio!

    Comment


    • #3
      Hi Peggy

      Thank you for replying to my thread, I am so sorry to read about your motorcycle accident. I hope you and your husband are making out all right. I am sure you would have liked to get your surgery over and done with.
      Wishing you all the best.
      Marianne
      Marianne
      rotoscoliosis, subluxation and spinal stenosis
      Surgery April 15, 2015 at age 67
      T11-L5
      Decompression with multiple discectomies
      Concord cages @ L2-3, L3-4, L4-5
      Osteotomies and local bone grafting
      Revision Feb.22, 2018
      Replaced rods
      Took out L5 disk to free up nerves
      Used BPM to help with fusing
      Fused T10-S1 with screws in pelvis

      Comment


      • #4
        I don't know what I would have done without the wonderful people from this forum before and after my surgery. You will not only find information about scoliosis, but get emotional support as well.
        Karen

        Surgery-Jan. 5, 2011-Dr. Lenke
        Fusion T-4-sacrum-2 cages/5 osteotomies
        70 degree thoracolumbar corrected to 25
        Rib Hump-GONE!
        Age-60 at the time of surgery
        Now 66
        Avid Golfer & Tap Dancer
        Retired Kdgn. Teacher

        See photobucket link for:
        Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
        Before and After Picture of back 1/7/11
        tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
        http://s1119.photobucket.com/albums/k630/pottoff2/

        Comment


        • #5
          Hi Karen

          Originally posted by golfnut View Post
          I don't know what I would have done without the wonderful people from this forum before and after my surgery. You will not only find information about scoliosis, but get emotional support as well.
          Your golf video is amazing, hard to believe you can move like that after the surgery you have had.
          Marianne
          rotoscoliosis, subluxation and spinal stenosis
          Surgery April 15, 2015 at age 67
          T11-L5
          Decompression with multiple discectomies
          Concord cages @ L2-3, L3-4, L4-5
          Osteotomies and local bone grafting
          Revision Feb.22, 2018
          Replaced rods
          Took out L5 disk to free up nerves
          Used BPM to help with fusing
          Fused T10-S1 with screws in pelvis

          Comment


          • #6
            Marianne,
            When I look at the video, I am amazed at how different I swing now than when I was 15 months post-op. That video was my first attempt at golf after 15 months of not doing any twisting, bending, etc. Now, my swing is much more fluid and faster than when the video was taken. I am only saying that so that people know that for most of us, everything gets so much better, even after 2 years. I truly believe that most people do not continue to post when they are doing great because they just get busy moving on with their life. I am busy, but feel that I owe it to others to encourage them based upon my experiences. I have won two tournaments and had a hole-in-one since my spinal fusion in January of 2011. I never would have dreamed it was possible.
            Karen

            Surgery-Jan. 5, 2011-Dr. Lenke
            Fusion T-4-sacrum-2 cages/5 osteotomies
            70 degree thoracolumbar corrected to 25
            Rib Hump-GONE!
            Age-60 at the time of surgery
            Now 66
            Avid Golfer & Tap Dancer
            Retired Kdgn. Teacher

            See photobucket link for:
            Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
            Before and After Picture of back 1/7/11
            tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
            http://s1119.photobucket.com/albums/k630/pottoff2/

            Comment


            • #7
              Karen

              I am thankful to those of you that do post after succesful surgery, we can learn so much from from your post and know what to expect. Congratulations on your hole in one that must have been exciting. I am not a golfer but my husband, son and daughter and family all golf. We just had a family golf weekend here, about 25 adults and 12 kids. Lots of fun it is an annual weekend for us.
              Marianne
              rotoscoliosis, subluxation and spinal stenosis
              Surgery April 15, 2015 at age 67
              T11-L5
              Decompression with multiple discectomies
              Concord cages @ L2-3, L3-4, L4-5
              Osteotomies and local bone grafting
              Revision Feb.22, 2018
              Replaced rods
              Took out L5 disk to free up nerves
              Used BPM to help with fusing
              Fused T10-S1 with screws in pelvis

              Comment


              • #8
                Marianne,

                Welcome! Most of us on this site who've had long fusions for scoliosis go to orthopedic surgeons. Ideally, you want someone who is trained specifically in scoliosis surgery and is a member of the Scoliosis Research Society. It's very important to get a surgeon who does these surgeries regularly, even if that means traveling for surgery.

                Best wishes,
                Evelyn
                age 48
                80* thoracolumbar; 40* thoracic
                Reduced to ~16* thoracolumbar; ~0* thoracic
                Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
                Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
                Not "confused" anymore, but don't know how to change my username.

                Comment


                • #9
                  Evelyn,

                  The surgeon I am seeing Oct. 8th is an Orthopedic Surgeon who specializes in scoliosis.His name is Dr. Dana Wilson, I wondered if anyone on the forum knows him. Is there anything specific I should be asking him about. This is all so new to me and I am very nervous about the whole thing. My pain seems to be getting worse all the time. And I am having great difficulties walking.
                  Marianne
                  rotoscoliosis, subluxation and spinal stenosis
                  Surgery April 15, 2015 at age 67
                  T11-L5
                  Decompression with multiple discectomies
                  Concord cages @ L2-3, L3-4, L4-5
                  Osteotomies and local bone grafting
                  Revision Feb.22, 2018
                  Replaced rods
                  Took out L5 disk to free up nerves
                  Used BPM to help with fusing
                  Fused T10-S1 with screws in pelvis

                  Comment


                  • #10
                    Marianne: Welcome! I believe that the book on scoliosis has questions. Is the doctor a member of the SRS? How many surgeries on older persons w/ disc repairs does he do in a month/year? That was important to me since I am also an older person w/ no previous back surgery and my main problem was disc degeneration and stenosis.

                    There are lots of threads w/ questions to ask....just review them and then make your own list.

                    Susan
                    Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                    2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                    2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                    2018: Removal L4,5 screw
                    2021: Removal T1 screw & rod

                    Comment


                    • #11
                      Susan, thank you for the information. You have had a lot to deal with yourself and now have to have another operation.
                      I wish you all the best and will be thinking about you.
                      Marianne
                      Marianne
                      rotoscoliosis, subluxation and spinal stenosis
                      Surgery April 15, 2015 at age 67
                      T11-L5
                      Decompression with multiple discectomies
                      Concord cages @ L2-3, L3-4, L4-5
                      Osteotomies and local bone grafting
                      Revision Feb.22, 2018
                      Replaced rods
                      Took out L5 disk to free up nerves
                      Used BPM to help with fusing
                      Fused T10-S1 with screws in pelvis

                      Comment


                      • #12
                        Hi Marianne!
                        I agree with Evelyn & Susan's recommendations. Even if I might have a 'textbook' scoliosis case, I want a doctor with lots of experience to draw from, in case of complications! In fact, it's due to the great information on this board that I'm searching for a new surgeon. I'm considering traveling.
                        Some of my less important questions were about wearing a brace & rehab. I also asked about the length of the surgery. I've gotten most of my information about what to expect in recovery from this site.
                        Based on your diagnosis date, you really haven't had much time to absorb the whole idea of this major surgery. I'm 59 & my doctors have been talking about scoliosis surgery for the past 9 years. I finally decided to have the surgery this fall, but instead I'm recovering from a motorcycle accident. The blessing in disguise was finding this board & understanding that I need a more experienced surgeon. Perhaps surgery will be this spring.
                        Peg
                        Last edited by PeggyS; 08-29-2013, 07:18 PM. Reason: Added more info.
                        Peg
                        61 yrs old
                        75 degree lumbar curve with thoracic kyphosis
                        T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
                        Working on healing in Columbus, Ohio!

                        Comment


                        • #13
                          Hi Peggy

                          Yes you are right, I am still trying to absorb the idea of this major surgery. I will see Dr. Wilson and ask lots of questions as you all sugested and go from there.
                          I hope you are recovering from your accident and wishing you well.
                          Marianne
                          Marianne
                          rotoscoliosis, subluxation and spinal stenosis
                          Surgery April 15, 2015 at age 67
                          T11-L5
                          Decompression with multiple discectomies
                          Concord cages @ L2-3, L3-4, L4-5
                          Osteotomies and local bone grafting
                          Revision Feb.22, 2018
                          Replaced rods
                          Took out L5 disk to free up nerves
                          Used BPM to help with fusing
                          Fused T10-S1 with screws in pelvis

                          Comment


                          • #14
                            Originally posted by Marianne View Post
                            Susan, thank you for the information. You have had a lot to deal with yourself and now have to have another operation.
                            I wish you all the best and will be thinking about you.
                            Marianne
                            Thanks for your well wishes. Major surgery is a craps shoot, especially for us older persons. Almost everyone that I know had some problem postop, most of them minor.

                            Inspite of some minor problems and one major one, that of my hernia repair, I would have the surgery all over again. I am a fairly healthy woman and the prospect of increasing problems with multiple disc problems and stenotic discs was the tipping point in my decision. I did quite a bit physically before my surgery as I had lots of minor procedures done. Then, they all wore off and I had to face the music.

                            My thread details my decision and indecision. It is a journey. The recovery seems to take longer that you want. Line up your help. I went to a rehab hospital for a week and that was a good decision for me. I remember almost nothing of the 10 days after surgery in the surgical hospital.

                            I wish you well. The main factor in surgery is having confidence/trust in your surgeon. I did and was phenomenally relaxed going into both surgeries.

                            Hugs to you, Susan
                            If you want to talk on the phone, send me a PM and I will give you my email and phone number.
                            Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                            2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                            2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                            2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                            2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                            2018: Removal L4,5 screw
                            2021: Removal T1 screw & rod

                            Comment


                            • #15
                              hi Marianne
                              i read your posts but did not see mention of how big your curves
                              are, where they are....where it was suggested the fusion start and end...
                              have you discussed whether you have any options...?
                              if there is any choice of how far to extend the fusion, it can help
                              to get more than one opinion from more than one top surgeon.

                              you might want to discuss whether you could have a minimally invasive approach...there is a surgeon in CA...at Cedars Sinai...who believes minimally invasive approach can be used for just about everybody, regardless of where the curves are located...

                              you might want to ask whether the surgeon is recommending one metal be used over another metal....and why...
                              how much curve reduction could you look forward to...
                              and what does the surgeon think about reduction in your pain levels,
                              after healing is complete.

                              in general, when it comes to any kind of surgery, i know some people would rather not know all there is to know about what will happen in the operating room, and afterwards...depending on what surgery they need...
                              but i think that the more the patient knows...and knows to ask questions about...the better...

                              best of luck...
                              jess

                              Comment

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