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  • #16
    While I feel immense sympathy for what you've been through, I still won't sit idly by and let newbies think what happened to you is typical - or to be expected.

    I find it difficult to buy into the notion you're privy to some real, unpublished percentage of people who actually have scoliosis (defined as > 10°) because "many" neurosurgeons told you that, or believe how "so many" (how many IS that, actually?) teenagers have unnecessary, assembly line surgery where no alternatives are offered.

    Are you and/or these "many" neurosurgeons everywhere? In every examining room of every surgeon as they talk to parents and patients? How can you attest to what they're told?

    All these surgeons tell parents and patients hardware can't dislodge - and they only tell them the peachy side of surgery? Really?? Mine damn sure didn't sugar-coat it. I don't personally know anyone who's surgeon did, but I'm of the opinion a patient should educate themselves enough to run the other direction if one DID say that.

    Lastly, I don't claim to know the malpractice rates of ALL surgeons, nor do I care. The ONLY surgeon I researched thoroughly was the one I chose for my surgery (as should everyone).

    At least on that point (that people should research), I think we can agree.


    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

    Comment


    • #17
      I don't quite understand your constant antagonizing or rather how you're coming across towards myself because you are unaware of what others might be experiencing besides yourself. We are two separate individuals with totally different backgrounds and nothing alike. Again, I have been going through this for 28 yrs now, versus your surgery that you just basically had done recently. (and by the way, I'm happy that so far things are ok for you) Problems don't just happen over night, however, as you don't find out things that might be going on with you until years later and doctors researching. It takes time for things to *settle in* so-to-speak and things happen over time, like in our case with the Harrington instrumentation. In this case there ARE several out there JUST LIKE myself that are going through numerous surgeries.

      I, like you, thought after my INITIAL surgery that I was ok, that I was done and such a *success*. (my doctor seemed great when things were going right-heck, I thought he was God) I didn't have pain right away either. Again, you don't know this until over time and different experiences, such as having children after surgery with hardware, fusion, etc. All of this takes time, as is many of the cases, with exception to those that suffered infections from the hardware, the surgery in general, etc.

      Newbies can think what they want and judge for themselves. I would want to hear both sides of the story and from those that have had hardware over time as well. I am by NO means saying this is what's GOING to happen. As far as what you want to *buy into*, that is your business. I didn't ask you to buy into anything, nor am I trying to. I think dealing with my experiences for this many years and the people I have met, physicians I have met and spoken to across the country, FDA, attorneys, foundations, support groups, etc etc that I will hear many stories and statistics of varying degrees, but quite similar in nature. Big deal!

      As far as what YOUR doctor told you versus what other doctors tell their patients is going to vary to every degree, and none of them are ALWAYS right. As far as *educating* yourself, it was sure as heck alot more different back when I had MY initial surgery in 1981 versus yours in what, 2007/2008? We didn't HAVE the research back then, NOR the doctors or even much about scoliosis for that matter...much less the internet. Doctors were not as familiar with it as they are now, hence why my parents chose someone they THOUGHT was the best (and he's still seen as that-a pioneer in this field)...and like I said before, I had to go back to because there wasn't anyone else. As time went on and research (my internet availability was not there until the end of 1997 so everything prior to that was by phone and mail or referrals) was more available I did LOTS of research and went to several other doctors, but again, noone else would help me. Is that supposed to be MY problem? Only if you were in that predictament would you understand. And yes, malpractice suits are something that are important so you know exactly what you're dealing with before you decide to have this person take your life into their hands. It's silly NOT to. You can't take everything at face value. This is also a business. I guess other than this, it's best to practically write a book so-to-speak of all your questions (as I always did) and see if they are willing to take the time to answer them. Bedside manner is also a very important issue as well.

      I don't expect anyone's sympathy, but I also don't particularly like feeling attacked either. This is supposed to be a board to talk to others that have a little something in common and share their experiences (whether good OR bad). None of us of course is a doctor or the end-all decision for someone contemplating surgery or not. That is common sense they need to use for themselves. They can only know what is best for them or whom as a doctor suits them and makes them feel comfortable. Some people come on here also just to talk to others because they might not be feeling particularly well and make them feel like someone understands...or try to be there for someone else. This shouldn't be a trial and jury session, nor have to prove anything.

      Thank you to everyone else that has been understanding and I wish you all the best.

      Shel

      Originally posted by txmarinemom
      While I feel immense sympathy for what you've been through, I still won't sit idly by and let newbies think what happened to you is typical - or to be expected.

      I find it difficult to buy into the notion you're privy to some real, unpublished percentage of people who actually have scoliosis (defined as > 10°) because "many" neurosurgeons told you that, or believe how "so many" (how many IS that, actually?) teenagers have unnecessary, assembly line surgery where no alternatives are offered.

      Are you and/or these "many" neurosurgeons everywhere? In every examining room of every surgeon as they talk to parents and patients? How can you attest to what they're told?

      All these surgeons tell parents and patients hardware can't dislodge - and they only tell them the peachy side of surgery? Really?? Mine damn sure didn't sugar-coat it. I don't personally know anyone who's surgeon did, but I'm of the opinion a patient should educate themselves enough to run the other direction if one DID say that.

      Lastly, I don't claim to know the malpractice rates of ALL surgeons, nor do I care. The ONLY surgeon I researched thoroughly was the one I chose for my surgery (as should everyone).

      At least on that point (that people should research), I think we can agree.


      Regards,
      Pam

      Comment


      • #18
        Originally posted by Shelgrl66
        Thank you, Sarah. I totally understand where you're coming from in regards to others reading, etc. Of course not everyone has this type of outcome, which is great. Every case is different in regards to what hardware is used, what levels, etc. In my case, an initial revision surgery had to be performed because of the history of the Harrington/Luque hardware on long fusions extending into most of the lumbar, creating the flatback deformity, broken hardware, etc. There are thousands out there across the globe. Having children did not help either.

        Take care,
        Shel
        Hi Shel,

        I just re-read your original timeline and realized you had your first surgery when your curve was only 30 degrees - I know I was told they wouldn't have operated on me with a curve under 45 degrees. That is really awful that things went downhill so quickly for you after what I do now agree might have been an unneeded surgery at that point in time. Plus the fact that you had to deal with a Harrington rod in your lumbar area. I guess there really is no comparison between our situations since my curve was much higher (62 degrees on the day of surgery) and in my thoracic area (easier place to deal with a Harrington rod).

        I think this shows that each situation is unique, but that we can only make the choices we make with the information and technology available at the time. I guess I got lucky. I hope with the new technology coming out now, your situation can be fixed!

        -Sarah
        - 39 years old
        - At age 14, curve progressed from 45 degrees to 62 degrees in two months.
        - Surgery in 1990 at the Children's Hospital of Eastern Ontario (CHEO) with Dr. Letts. Fused T5 to L2. Corrected to about 30 degrees.
        - Harrington rod
        - Herniated disc - L5/S1 - January 2008. Summer 2009 - close to making a full recovery.
        - New mommy as of February 2011
        - Second child - September 2013
        - Staying relatively painfree through physio exercises!

        Comment


        • #19
          Originally posted by SIsForSarah
          I just re-read your original timeline and realized you had your first surgery when your curve was only 30 degrees - I know I was told they wouldn't have operated on me with a curve under 45 degrees.
          I was told the same thing, that they would consider operatig at 30, and would at 45. But my doctors (Dr David McQueen, Winnipeg & Dr David Bradford, Minneapolis) had always been upfront with me. Pointing our the dangers of surgery due to my excessive curves, and lifespan if we elected not to have the surgery. But they were also very positive, Dr Bradford is an amazing doctor.

          Brad
          Surgeries July 26th & August 3rd 1983 (12 years old)
          Still have 57 degree curve
          2 Harrington rods
          Luque method used
          Dr David Bradford
          Twin Cities Scoliosis Center
          Preop xray (with brace on)
          Postop xray

          Comment


          • #20
            Yes, it was a surgery that should have never been done, but at the time we didn't know that as information wasn't readily available and because this surgeon told us that if I didn't have it done that I would be crippled in a wheelchair for the rest of my life. I was told all the horror stories of someone who basically had larger curves if I didn't have the surgery. With that being said, my parents were basically scared into a surgery and with him the professional, and like I said, top 3 in the world at the time he was the one that knew what he was talking about, so we thought. Back then noone really knew all that much about scoliosis. We were also told that because of the way it was rotating that I needed the surgery. After every 6 mth appt the curve had gone up another 5 degrees. He was against bracing even and said it wouldn't help. My parents also didn't want me to have to go through xrays all the time, but little did they know what was ahead AFTER the surgery. It was basically a 30 degree thoracolumbar curve that he put on the records afterwards as a 35...not that that made a world of difference. Now because of that one initial surgery, I have to deal with all this for the rest of my life. I think I would have rather taken my chances and see what would have happened over time..in my particular case..but that's neither here nor there and done and over with. I just don't want other people to have to keep experiencing this and most especially teenagers that may not even need these surgeries. You see, these doctors get tremendous kickbacks on the hardware they push out, especially this particular surgeon.

            Yes, all surgeries and cases are definately unique. With yours I can see why you would have needed surgery, which was affecting your vital organs. I'm glad that your outcome was much better as well. I want to thank you all again for your understanding and I wish you all the very best.

            Shel

            1981-Harrington/Luque instrumentation T9-L5 for 30 degree thoracolumbar curve.
            1990-Revision surgery-Broken hardware/flatback deformity/pseudoarthrosis-Cotrel Dubousett instrumentation with extension into sacrum. (never done correctly)
            1995-Revision surgery-Severe flatback deformity/kyphosis-Moss Miami instrumentation (T5-sacrum) with titanium cages (back/front/back procedure), thoracoplasty, total reconstruction with osteotomies. (surgeon did surgery while coming down with chicken pox and developed encephalitis with brain damage, etc during 14 hr surgery)
            2005-Car accident-spinal cord injury/myelopathy from top of rods/hooks at T5. Surgery to remove hardware, with exception of cages. Permanent damage.
            2008-5th surgery pending for severe stenosis in cervical spine, as well as lumbar spine because of prior surgeries.

            Comment


            • #21
              We just had a debate on this subject, and have come up with the definition as any surgery on the same or adjacent levels as a previous surgery.

              --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


              • #22
                Yes.

                Revising is altering or changing something that is ALREADY existing.

                “If” I have my neck fused at some point, this would NOT be considered a revision surgery.

                “If” I have a problem with my existing T2-Pelvis construct and they have to go in again, I will then start crying because I will then be a revision patient.

                Hey Brad, we miss you....could use a weather (or rod) report......(smiley face)

                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


                • #23
                  Okay, just read Linda's definition of revision. So this brings me to a question for Ed. IF you have your neck fused, where will it start? If it's the next vertebra up from your fusion that would be revision, right?
                  Be happy!
                  We don't know what tomorrow brings,
                  but we are alive today!

                  Comment


                  • #24
                    Hi rohrer,

                    no, I think that would be considered an extension, not a revision per se.
                    Not sure how much the difference matters!

                    Gayle

                    Originally posted by rohrer01 View Post
                    Okay, just read Linda's definition of revision. So this brings me to a question for Ed. IF you have your neck fused, where will it start? If it's the next vertebra up from your fusion that would be revision, right?
                    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


                    • #25
                      Thanks, Gayle. It doesn't really matter how things are classified, unless it matters when it comes to finding a surgeon. To me, another surgery is another surgery. It's a real bummer for those that have to have them.
                      Be happy!
                      We don't know what tomorrow brings,
                      but we are alive today!

                      Comment


                      • #26
                        Originally posted by rohrer01 View Post
                        IF you have your neck fused, where will it start?
                        If it happens, it would be C5-C6, C6-C7. It would be an ACDF. This would not be a revision, it’s a separate issue.

                        The meds have done their job. I have no pain or numbness.....I have also bought my pane tickets for South America. He he

                        Time to hit the fish tank.

                        http://www.youtube.com/watch?v=WqvXg...iAxZpHJTXfEeeA

                        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


                        • #27
                          If the level is adjacent to an already operated level, it would be considered a revision.
                          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


                          • #28
                            Originally posted by titaniumed View Post
                            If it happens, it would be C5-C6, C6-C7. It would be an ACDF. This would not be a revision, it’s a separate issue.

                            The meds have done their job. I have no pain or numbness.....I have also bought my pane tickets for South America. He he

                            Time to hit the fish tank.

                            http://www.youtube.com/watch?v=WqvXg...iAxZpHJTXfEeeA

                            Ed
                            I'm so glad for you, Ed. My neck is a disaster waiting to happen. I have a bone spur on C-5 growing toward my spinal cord and a bulging C-6 disc (not sure if it's C5/C6 or C6/C7). But mine would hopefully be neither an extension or revision, since I haven't had spine surgery. L-5/S-1 disc is giving me trouble, too, and can't be fused EVER unless I get the scoli fixed. Keep the epidurals coming! I hope the alternative treatments keep working without killing me!

                            "Time keeps on tickin', tickin', tickin', into the future"

                            Getting older really bites!

                            That YouTube video totally reminded me of this movie: A Turtle's Tale: Sammy's Adventures
                            Have fun!
                            Last edited by rohrer01; 06-22-2013, 12:05 AM.
                            Be happy!
                            We don't know what tomorrow brings,
                            but we are alive today!

                            Comment


                            • #29
                              Hi rohrer,

                              you mention your L5-S1 disc giving you trouble--I don't understand when you say it can never be fused unless you fix your scoli...why would that be when your scoli is high thoracic? It seems like L5-S1 could be fused if necessary without affecting the rest of your spine.
                              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


                              • #30
                                rohr's signature says she has a double curve...

                                i do know it is possible to not fuse both curves...
                                i have not had surgery...yet...
                                however, surgeons agreed, in my case, to fuse starting at T11, ignoring upper curve of 42 degrees and only addressing lower curve of 70 degrees...
                                but that was a few years ago...do not know if they would advise that now,
                                or suggest original plan of fusing both curves starting at T4...

                                not sure why rohr wrote what she did...
                                maybe she meant they couldn't address the DISC problem in lumbar without
                                doing a fusion....?
                                since scoli patients cannot just get a disc repaired, the way non scoli
                                patients with disc problems can...

                                jess

                                Comment

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