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Confused - what are the reasons for physical restrictions after fusion?

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  • #16
    Originally posted by txmarinemom View Post
    In my personal opinion, I (mostly ) agree with Carmell in that I believe all KIDS should be restricted. And if restrictions haven't bothered Savannah, what's the big deal?
    I wouldn't say restrictions haven't bothered her. I would say they haven't been a large burden. But folks shouldn't burden themselves with imaginary loads no matter how small.

    If there is no difference in pseudoarthrosis rates between kids who were restricted and kids who just self-limited then I think that's an important thing to know if/when my other daughter is fused.

    There is either evidence out there or there is not. Stuff like that matters to me. I understand being cautious in the face of no evidence and Lincoln's position remains curious.

    I'm guessing there is some perhaps diffuse evidence in hand that drives the 6-12 month usual restrictions with this surgery.

    I'd like to know what the pseudoarthrosis rate is in kids with the new hardware. It may so low that the differences between restricted kids and non-restricted kids might be in the statistical noise.
    Last edited by Pooka1; 10-29-2008, 06:30 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


    • #17
      Wow, I'm not even sure where to begin on this one. I agree with the others who say every child is different. My daughter, for example doesn't have any screws in her back. Did that make it more necessary to limit her activities than for kids with say, 10 or 12 screws? I don't know. I do know that her doctor was VERY strict with her restrictions. Jamie asked her surgeon if she could go hunting at two weeks prior to her one year anniversary. He told her absolutely not! She didn't go. Yet, Pam was doing tons of things long before she was one year post-op that Jamie wasn't allowed to do. Why is that? Jamie and Pam both have two rods and Jamie was much younger than Pam and yet Pam was released to do things very early in my opinion. Was it because Pam was in such great physical condition? Because Pam has screws and Jamie doesn't? Was Jamie's doctor just more cautious? We'll never know.

      Jamie and Pam are just two examples of why it would be so hard to do a study as to whether or not rods are overkill. Knowing my daughter like I do, she would not have limited herself after surgery without doctor's orders. I'm glad that she has two rods. Are some people having problems later in life because years ago doctors didn't use rods? Will Jamie have a greater chance of problems later in life because of not having screws in her back? Or will it be a blessing that she doesn't have screws since she won't have to worry about a screw coming loose or pressing or a nerve? I don't know.

      I could let myself wonder and worry about all of this and ore and eventually drive myself crazy with worry or I can live my life to the fullest. I choose to live my life and enjoy every minute of painfree living that Jamie has. Jamie will be four years post-op in December. She is an active, healthy and very busy 17 y.o. Her back is not perfect. She still has Kyphosis above her fusion which might someday need to be surgically corrected. If it does, so be it. I just can't dwell on the "what-ifs" and miss out on life.

      Mary Lou
      Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

      Comment


      • #18
        Thanks for that, Mary Lou.

        While I think it is definitely known that rods/fixation have a better outcome than no rods/fixation, that doesn't really address whether the rods/fixation are strong enough to avoid pseudoarthrosis absent some major trauma in nonrestricted kids.

        I'm a scientist. Questions of fact and evidence matter to me per se. There is a lot of sloppy thinking out there in the world (NOT referring to this thread!). I'm looking at another kid who will likely need this surgery and I want to know what is and is not known.

        I think our surgeon will be able to apprise me of the situation in no time flat like he has done on other topics. I'll report it for those who care.

        sharon
        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


        • #19
          Hi Sharon
          Since we won't be seeing any double blind clinical trials for scoliosis any time soon, the medical community has established a database (Scolisoft) to track surgical procedures and outcomes. I'm not sure if they'll open the database to parents, but it may eventually provide info to answer your question.

          Eur Spine J. 2008 Oct 2.

          Experience with an online prospective database on adolescent idiopathic scoliosis: development and implementation.

          Arlet V, Shilt J, Bersusky E, Abel M, Ouellet JA, Evans D, Menon KV, Kandziora F, Shen F, Lamartina C, Adams M, Reddi V.

          Department of Orthopedic Surgery, University of Virginia, Suite 330, 400 Ray C Hunt Drive, Charlottesville, VA, 22908, USA, va3e@virginia.edu.

          Considerable variability exists in the surgical treatment and outcomes of adolescent idiopathic scoliosis (AIS). This is due to the lack of evidence-based treatment guidelines and outcome measures. Although clinical trials have been extolled as the highest form of evidence for evaluating treatment efficacy, the disadvantage of cost, time, lack of feasibility, and ethical considerations indicate a need for a new paradigm for evidence based research in this spinal deformity. High quality clinical databases offer an alternative approach for evidence-based research in medicine. So, we developed and established Scolisoft, an international, multidimensional and relational database designed to be a repository of surgical cases for AIS, and an active vehicle for standardized surgical information in a format that would permit qualitative and quantitative research and analysis. Here, we describe and discuss the utility of Scolisoft as a new paradigm for evidence-based research on AIS. Scolisoft was developed using dot.net platform and SQL server from Microsoft. All data is deidentified to protect patient privacy. Scolisoft can be accessed at www.scolisoft.org . Collection of high quality data on surgical cases of AIS is a priority and processes continue to improve the database quality. The database currently has 67 registered users from 21 countries. To date, Scolisoft has 200 detailed surgical cases with pre, post, and follow up data. Scolisoft provides a structured process and practical information for surgeons to benchmark their treatment methods against other like treatments. Scolisoft is multifaceted and its use extends to education of health care providers in training, patients, ability to mine important data to stimulate research and quality improvement initiatives of healthcare organizations.
          Mom to Haley, 13.5 yrs old
          Diagnosed at 6 yrs old - 18T.
          Boston Brace at 9.5 yrs old - 34T/18L
          Switched to SpineCor at 10 yrs old
          Stable at ~22T OBX until 12.5 yrs old
          Adolescent growth spurt was brutal - scheduled for surgery Dec 7th.

          Comment


          • #20
            Originally posted by Snoopy View Post
            ... Pam was doing tons of things long before she was one year post-op that Jamie wasn't allowed to do. Why is that? Jamie and Pam both have two rods and Jamie was much younger than Pam and yet Pam was released to do things very early in my opinion. ...
            Hey! I think MaryLou just called me OLD - lol ...

            Seriously, I don't think the data on restricted vs. non-restricted will ever satisfy your curiousity, Sharon. The definition of a "restriction" is too subjective.

            Are they going to put things on the restriction list like "You can't fire a shotgun until 12 EXACTLY 12 months post-op"?

            (... and I'm pretty sure MaryLou/Jamie were the only ones who didn't think "What?!??" when I posted Hanson had released me to hunt/shoot clays)

            Hell ... even BLT can be subjective. You can't convince me that a large majority of children AND adults on here didn't BLT a little more than they were supposed to if it didn't hurt - and they wanted to/needed to reach something.

            I still say you're looking for detailed data over an overly broad and overly varied group. It'll never be apples to oranges.

            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


            • #21
              Originally posted by Pooka1 View Post
              Well, I think there is a difference between saying on the one hand that the hardware is required for the fusion and on the other hand that the hardware is so efficient that a pseudoarthrosis is very unlikely if you simply avoid pain with no other restrictions.

              In other words, acknowledging the hardware is necessary for a fusion doesn't rule out that it is strong enough to avoid pseudoarthrosis unless you fall out of a three story building.

              Those two things are not orthogonal but they are not mutually exclusive either on their face.
              Sharon,

              My last comments on the topic because it's going in circles.

              THE FACTS (debate, question, complain if you will ... you're hyper-focused on minutae)

              1.) Hardware is REQUIRED to best correct a curve - and most effectively hold the fusing spine.

              2.) Hardware does NOT guarantee pseudoarthrosis WON'T occur.

              3.) Rods ARE more likely to dislodge/break IF pseudoarthosis occurs. (see #2)

              4.) Any OTHER method that has been used to hold a fusing spine (i.e., casting with no hardware) increases the risk of pseudoathrosis and/or loss of correction.

              5.) Hardware, pseudoarthrosis and a 3 story fall are not even remotely related in the context you used.

              What isn't clear?
              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


              • #22
                Pam I would never call you old! lol If you are old, what does that make me, since I'm older than you?!

                Mary Lou
                Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

                Comment


                • #23
                  Pam, the reason why you think this is going in circles is that none of your points are relevant to what I'm asking. For example, the need for hardware in fusion is irrelevant to the question of whether that hardware can avoid pseudoarthrosis in all but the worst trauma.

                  Let's try it this way...

                  Fact: Most surgeons suggest period of physical restriction after fusion.

                  Question: Why? Do they pull it out of a bodily orifice or is there something out there that they use as a basis?

                  Fact: Most of these periods range from 6-12 months.

                  Question: Why this range and not some other range? Is it related to the known time for most fusion to occur in specific groups of patients?

                  Fact: At least one surgeon puts no restrictions on at least some kids after fusion surgery.

                  Question: Is he completely out to lunch or does he have some reason to think restrictions aren't required?

                  To say a definitive study hasn't been done is not equivalent to saying we know absolutely NOTHING about fusion rates, pseudoarthrosis rates, effects of physical restrictions in the post-op period, etc.

                  Either surgeons have some rudimentary baseline knowledge of this or they are pulling this stuff entirely out of thin air. Pick one please.
                  Last edited by Pooka1; 10-29-2008, 05:28 PM.
                  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


                  • #24
                    Originally posted by HaleyMom View Post
                    Hi Sharon
                    Since we won't be seeing any double blind clinical trials for scoliosis any time soon, the medical community has established a database (Scolisoft) to track surgical procedures and outcomes. I'm not sure if they'll open the database to parents, but it may eventually provide info to answer your question.

                    Eur Spine J. 2008 Oct 2.

                    Experience with an online prospective database on adolescent idiopathic scoliosis: development and implementation.

                    Arlet V, Shilt J, Bersusky E, Abel M, Ouellet JA, Evans D, Menon KV, Kandziora F, Shen F, Lamartina C, Adams M, Reddi V.
                    Thank you for posting that! Great idea.
                    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


                    • #25
                      Wow,

                      This one is still going?
                      The Japanese sure have lightened up since WW2 havent they?
                      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


                      • #26
                        LOL, Ed....

                        ...I think I saw that drill gun in Boachie's hand just before the anesthesiologist put me under......
                        Chris
                        A/P fusion on June 19, 2007 at age 52; T10-L5
                        Pre-op thoracolumbar curve: 70 degrees
                        Post-op curve: 12 degrees
                        Dr. Boachie-adjei, HSS, New York

                        Comment


                        • #27
                          I did promise some comedy, didnt I?

                          There was a Japanese game show a few years ago where they always did the most bizzare things. Desperate for ratings I guess.

                          Sharon, I do have some logical thoughts on this and I will post. In between thinking, I have to do this once in a while. Its a mental break.

                          Dont you love that facial expression?

                          Sorry for the interuption.

                          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


                          • #28
                            Hey Ed,

                            No need to apologize. Humor is good. And a motion to adjourn is always in order.

                            That last bit is all I remember from my Total Quality Management training. I am NOT kidding.

                            sharon
                            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


                            • #29
                              I think I found the problem...

                              I wrote: "But I don't think it is completely out to lunch to suggest that the hardware is overkill in terms of stabilization and that kids will be appropriately self-limited."

                              I didn't mean it was overkill with respect to fusion... it is clearly the best way around to ensure a fusion.

                              I was asking if it is overkill w.r.t. stabilizing the spine in the post-op, pre-fusion period such that physical restrictions are not necessary. It either is or it isn't. Physical restrictions either reduce pseudoarthrosis rates or they don't (in general within broads swaths of the fused population).

                              Clearly, at least one surgeon thinks the modern hardware stabilizes the spine enough such that physical restrictions are not required in some kids.

                              Clearly, most other doctors don't think so and put these kids on physical restrictions for months.

                              Someone is out to lunch here... I hope it isn't me (again!).
                              Last edited by Pooka1; 10-29-2008, 05:53 PM.
                              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


                              • #30
                                Sharon

                                With the element of risk involved here, it is most logical to suggest some sort of physical restriction. Granted, some might know some of the data as far as healing time is concerned and it could be a short period of time with children, others might not know about new data and it is just safer for the Doctors to tell patients "take it easy" With children, that's impossible and a Doctor might say don't worry about restricting your children. Tying your kids up and locking them in the closet till they heal wont work!

                                The period of time that is used is gathered from available research. They could have a record of a very short time, much shorter that 6 months, but then again it would be wise to round up higher and be safe with the 6 month figure. Its all about statistics and rounding. This data is thought out very carefully and published and is the standard. It is gathered from different groups of patients.

                                The parameters here vary quite a bit from healing and fusion rates for an infant vs a 100 year old individual. Babies have the stem cells working overtime and unfortunately the elder patient doesn't have that going for them. Cells just don't have the ability to regenerate when older and that's why this research is so important. ( I know I sound like Nancy Reagan).

                                They are not pulling this out of thin air due to the fact that they have been working on BMP for the last 50 years. There is data on bone fusion someplace and my suggestion would be watch all of these videos first. You could also contact Dr Jens Chapman up at University of Washington

                                http://www.researchchannel.org/search/sitesearch.aspx

                                Most people think that if something is made of "metal" that it is impervious to destruction.This is not the case. Its funny how we are switching to ceramics, composites, plastics and polymers in quite a few of our military applications.

                                As far as the material selection is concerned, quite a few factors are weighed out and of course the material has to be malleable and it also has to be corrosion resistant. Titanium is known by the general public as being light in weight hence bicycle parts.
                                It is very resistant to corrosion. It is used in underwater submarines ROVs due to that fact. Salt water tests are performed on metals for corrosion. This data is available through Carpenter Technologies in Redding, Penn.

                                My hardware was produced by Synthes. Dr Menmuir selected the Pangea system for me.

                                http://us.synthes.com/Products/Spine...gea+System.htm

                                This will keep you busy for a while! LOL

                                The screws have a non-linear pitch dia, and non linear lead. I'm assuming elliptical. I'm assuming that with all the research done through the years with all the Doctors and Engineers they decided that they wanted the screws torqued at 15Nm. With the screw constantly tightening down as it is driven, the bone material compresses and chips due to bone being a hard material and until the adhesion occurs there could be a possibility of it backing out and loosening. I don't know what this time period is, its a good question.

                                Since the rods have to be bent to conform to the needed shape,the weakest point will be at the bends. If someone bends the rods then the area around the cage will be altered and I'm guessing that that isn't all that good. The cage could move and that could be a problem with saggital and coronal balance hence more surgery to correct the problem. I wouldn't think you would want to heal crooked.

                                I don't know why a non union would occur, I do know that the older you are, your chances are higher, and this is why they selected to use BMP on me. One would think that any movement would be detrimental to fusion.

                                One thing that is interesting is the fact that rods will break with a non-union. From what I've read, it always happens. It must be the fatigue factor from the movement. Like taking a carrot and bending it back and forth till it breaks. I wonder why they just don't go larger in diameter on the rods?

                                cont
                                Last edited by titaniumed; 10-29-2008, 06:49 PM.
                                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

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