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  • New Here, Facing Long Fusion

    I have been lurking here for a long time, but have finally joined the forum since it looks as if I will not avoid surgery.

    I was diagnosed at age 8, in 1966, and wore a Milwaukee Brace for nine years. At 17 I was so, so happy to be free of the brace I'd lived with for so long, and no one ever told my family or me that I needed follow-up.

    In my early 30s, I began to have back pain, and by 40 I was sure my back had moved. I got the first x-rays in more than 20 years, but no longer had my old records for comparison. Doctors initially told me my curves might be stable, but they have progressed, and over the last two years they have moved nearly 10 degrees. The handwriting that has been on the wall is now in all caps.

    My spine guy tells me I will almost certainly need a fusion from T1 to the sacrum. He said he could do it, but when I asked him who would do it if I were his daughter or wife, he decided I should be at one of the big centers out of state. When I asked if there were anyone in Florida he felt was qualified to do my surgery, he said only one, Dr. Michael S. O'Brien.

    Turns out, Dr. O'Brien has moved his surgery from Miami to Baylor Scoliosis Center in Dallas, but he still sees patients for pre-op workups and post-op follow-ups in Miami. This would be so great for me; Miami is 100 miles, but Dallas is 1000.

    I'm in the process of scheduling a consult with Dr. O'Brien and would like to hear any feedback on him that anyone has. His background is very impressive, and he is now co-medical director of Baylor's center. You will see a million more questions from me as I move ahead. Thanks to all of you who have shared your brave stories on this forum. It gives me hope, but I'm TERRIFIED.
    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

  • #2
    Stephanie- I just turned 56 in June and on Tuesday I am having a fusion from T3or 4 to my sacrum. Same thing. Wore a Milwaukee brace. I'm in Indianapolis and am going to Keith Bridwell at Washington University in St Louis. You just have to go where you are comfortable but you want to make sure they do a lot of these adult scoliosis surgeries and that is their specialty. Hope you find someone you like!
    Age 56
    Wore a Milwaukee Brace for 3 years in hs
    Fused L4-S1 for high grade spondylolisthesis Jan '09 in Indy
    Thoracic 68
    Surgery Aug 31, 2010 T3 to L1
    Dr Bridwell St Louis
    http://www.scoliosis.org/forum/attac...1&d=1289881696

    Comment


    • #3
      Thanks! I just turned 52, hoping to put this off until I'm 53, mainly because my 3 year old granddaughter lives with us and I take care of her much of the time. I think it would be much easier if she were a year or two older. Harder for me physically, but easier for me in terms of child care and time away from my granddaughter.

      Dr. Bridwell is on the short list too, it's just that St. Louis is so far and hard to get to from where I am in Florida. I tried for Lenke but my curves aren't big enough. He won't take anything under 75 degrees anymore.
      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


      • #4
        Hi...

        Welcome.

        I would personally be a little concerned about how much time he spends in Florida, and how much he'll spend in the future. Surgeons with a busy practice would find it relatively difficult to spend any amount of time on a regular basis, away from that practice.

        Hope you get something figured out.

        Regards,
        Linda
        Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
        ---------------------------------------------------------------------------------------------------------------------------------------------------
        Surgery 2/10/93 A/P fusion T4-L3
        Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

        Comment


        • #5
          Stephanie,

          your story reminds me of mine, only a decade off. I was diagnosed in 76 and wore a Milwaukee for 3-4 years. You had 9 years--oh my. I too thought I was 'done' with my back. I know how shocking it is when 25 years later they tell you you need this surgery. It's a hard pill to swallow.

          Stick around here and ask all the questions you want. I'm almost 2 years post op and very happy with my results. I just said in another post of yours that now I feel totally normal. That's the best I could have hoped for.
          __________________________________________
          Debbe - 50 yrs old

          Milwalkee Brace 1976 - 79
          Told by Dr. my curve would never progress

          Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
          Pre-Surgury Thorasic: 66 degrees
          Pre-Surgery Lumbar: 66 degrees

          Post-Surgery Thorasic: 34 degrees
          Post-Surgery Lumbar: 22 degrees

          Comment


          • #6
            Welcome Stephanie

            My name is Melissa and on May 4 I was fused from T3 to Sacrum

            I am 51


            Melissa

            Comment


            • #7
              hi Stephanie
              welcome to the forum...

              wouldn't NYC be closer to you than Dallas ..? i mean, if you have to fly to a surgeon, i'd figure pick the closest place with great scoli surgeons...no?

              best of luck with wherever you end up...
              jess

              Comment


              • #8
                Hi, Stephanie,
                Welcome to the forum. Please know that it is natural to be "terrified". I haven't had surgery yet, but have found this forum to be so helpful in answering my questions and concerns. Good luck with your search for a good surgeon.
                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


                • #9
                  Stephanie

                  I was also a "reader" here, who wasn’t posting....Welcome.

                  Recovery from a heavy duty surgery takes all available energy, and "any" traveling can present problems in the first few months. Some do it, and do fine, but in my case I wouldn’t recommend it. At 3 months, I took a minimal walk around Virginia City for 4 hours, and I pretty much had to sleep for 2 days to recover from that little stroll.

                  There was no way I could handle a little one, and I give a lot of credit to the mothers here who do. Its exhausting without surgery!!! After fusion surgery, we shouldn’t be bending, lifting, or twisting. We really need to be "laying low" for a few months during the most critical healing time.

                  A T1-Pelvis is a long fusion. There are a few of us T2-pelvis people here, but not too many T1-Pelvis.... It will be interesting to see what Dr O'Brien says as far as length is concerned. He worked with Dr Shelokov before he passed, probably picked up a few tips from a master.

                  Ed
                  49 yr old male, now 63, the new 64...
                  Pre surgery curves T70,L70
                  ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                  Dr Brett Menmuir St Marys Hospital Reno,Nevada

                  Bending and twisting pics after full fusion
                  http://www.scoliosis.org/forum/showt...on.&highlight=

                  My x-rays
                  http://www.scoliosis.org/forum/attac...2&d=1228779214

                  http://www.scoliosis.org/forum/attac...3&d=1228779258

                  Comment


                  • #10
                    Oh Stephanie, what a situation for you. It can be done of course and you will be fine but as Ed said, with a little one to look after, gee you will find it hard when you get home. What a wonderful grand mother you are to care for her most of the time.

                    Whatever the circumstances are I think you should put yourself first, easy to say I know but hard to do. If you can work that out, all the very best for surgery, plus finding someone close to home that you have absolute faith in to do the operation.

                    Seems a lot but you will work it out Stephanie, one step at a time. Wish you luck.

                    Lorraine.
                    Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
                    Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

                    Comment


                    • #11
                      Thanks, everybody.

                      I don't expect to be taking care of a young child after surgery, not for a while, and not the way I have been. That's why I want to wait until my granddaughter is at least 4, when she can understand things better and when she is a little less needy. I have to choose a time when other family will be able to pick up the slack. The baby is in preschool from 9 to 3 every day, and that helps.

                      I am definitely looking for a top surgeon. Bridwell is on the list, but I thought the guy in NY (Boachie, right? Or is there another?) did not accept any insurance. I have Blue Cross/Blue Shield, and I can use that many places, including St. Louis.

                      Other than St. Louis and Boachie in NY, who are the top guys? I've been reading the forum for years, but I still don't really have this figured out. I have gotten the impression that the Baylor Scoliosis Center is one of the best in the country, but is this not the case? Dr. O'Brien is co-director there, and I had the impression he was a top adult scoliosis surgeon.

                      As for travel, non-stop to Dallas is easy, so is non-stop to NY, but I'm somehow intimidated by the thought of going to NY.
                      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


                      • #12
                        hi Stehanie
                        if you are willing to travel to NYC...i'd try Dr Lonner, Dr Neuwirth, or Dr Errico...

                        best of luck...
                        jess

                        Comment


                        • #13
                          Hi Stephanie,

                          Welcome. We are the same age, with very similar curves. I have an appt. with Dr Boachie in Sept. I also have Blue Cross/Shield. He accepts "out of network" payment, but the initial consult is cash. I spoke to someone who recently had her surgery done by him, and has the same insurance as we do and she said she had very low out-of-pocket expenses. I have seen Dr.Neuwirth already, and it is the same deal with him also. I liked him very much. I am still very unsure if I want to proceed or not, with the surgery. Do you have a lot of pain/disability? I have good and bad days. If they were bad all of the time, the decision would be much easier! Good Luck with your search.
                          Lori in PA, 52 yrs. old
                          T54/L72
                          Surgery 6/7/11, T3-S1, all posterior, with pelvic anchors
                          Gained 2 inches!
                          Dr. Boachie, HSS, NYC
                          12/10/13 Hardware Removal for infection
                          Lost 2", gained PJK!

                          Comment


                          • #14
                            I, too wore a milwaukee brace for 4 yrs in high school 24/7 and 3 yrs. at night in college. Was diagnosed with lumber scoliosis when 13 yrs. old. With remarkable correction after the brace I thought I was done with this. Well... as it turns out, my curve in now 56 degrees. I lived in St. Pete FL at the time. Did a lot of research on surgeons. Now live in Knoxville for 4 yrs. My surgeon is Dr. Bridwell in St. Louis. I know a long way to go, but I won't sacrifice distance for expertise. I urge you to do the same. Travel a little for the best. There was no one in the state of FL that gave me the confidence that I have with Dr. B. Will be scheduling surgery in Feb. I think. Don't have any physical symptoms or limitations except for the hump in my back. However, Dr. B. suggests I get this done while I'm healthy and don't have the problems that others have. We know that the curve will continue to progess. This blog has done wonders for my confidence and has given me so much encouragement re: my impending surgery. I'm so thankful for everyone's input, experiences,... Mary Ann

                            Comment


                            • #15
                              Originally posted by mary ann View Post
                              I, too wore a milwaukee brace for 4 yrs in high school 24/7 and 3 yrs. at night in college. Was diagnosed with lumber scoliosis when 13 yrs. old. With remarkable correction after the brace I thought I was done with this. Well... as it turns out, my curve in now 56 degrees.
                              Hi. Wow you wore braces for quite a long time!

                              I'm curious if an orthopedic surgeon experienced in scoliosis recommended that you wear a brace after you were skeletally mature (by ~15 or 16 yo at the latest). Bracing normally stops at skeletal maturity.

                              Also, do you remember what your curve measured when you were skeletally mature? Lumbar curves tend to be more stable than thoracic curves. So if you had a sub-surgical lumbar curve at maturity and you are now in surgical range, I just wonder what your surgeon says about that.

                              Thanks in advance.
                              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."

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