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  • #16
    Originally posted by Tina_R View Post
    Once for fun I typed "arrogant s" into google and one of the first things google filled in was "arrogant surgeon". Many of them are arrogant and some to the point where I think they are unbalanced. Don't think I don't respect their immense talents, but this is the truth.
    There can be stress, not so much on the procedure, but with self criticism upon failures. Self analysis on human nature and balancing risk.

    Mr Henry Marsh, a pioneering senior neurologist addresses these sorts of things after 35 years in the field.....Brain surgeries can have devastating failures..... He admits that surgeons are tempermental....
    https://en.wikipedia.org/wiki/Henry_...(neurosurgeon)

    "On Making Mistakes"
    https://www.youtube.com/watch?v=NJ92...DiseaseJournal

    If you do not want to watch the whole video above, watch from 27:40....

    https://en.wikipedia.org/wiki/Do_No_Harm_(book)

    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


    • #17
      Yes the orthopaedic knew about the arachnoiditis diagnosis but he did not believe in it. When he expressed that, I just felt that everyone is entitled to an opinion. But there wasn't another explanation for what was happening.. There isn't a cure or a well defined treatment but the pain pump and a lot of moving. So ,I really just continued seeing my orthopaedic. This is what we decided together.
      When the accident occurred, I really had to make a decision quickly and focused on the words you need a neurosurgeon. I never at that time, considered the orthopaedic. But when I recovered some I informed him.
      So months later, when I came to his office with current xrays he knew before I was there that I had broken my neck.
      One of his comments was" the new surgery hooked into my ( meaning his) rods.). I really thought the rods were mine because they were in me.
      His attitude and comments took me down when I was truly suffering from trama. I never told him, but I couldn't at that time. I just had to survive.
      So when I had further problems, I just stayed with the doctors at Rush neurosurgery even though they are farther away.
      The broken neck was true trama. Since it was bilateral right above the fusion it is a miracle that I have some problems but I can walk and move..
      Last edited by jackieg412; 12-27-2020, 12:35 PM.
      T10-pelvis fusion 12/08
      C5,6,7 fusion 9/10
      T2--T10 fusion 2/11
      C 4-5 fusion 11/14
      Right scapulectomy 6/15
      Right pectoralis major muscle transfer to scapula
      To replace the action of Serratus Anterior muscle 3/16
      Broken neck 9/28/2018
      Emergency surgery posterior fusion C4- T3
      Repeated 11/2018 because rods pulled apart added T2 fusion
      Removal of partial right thoracic hardware 1/2020
      Removal and replacement of C4-T10 hardware with C7 and T 1
      Osteotomy

      Comment


      • #18
        Originally posted by Tina_R View Post
        Implants being the rods? Which were never meant to support the spine forever, were they, only until the spine fuses. So if the spine never hardens and the rods are taking all the forces, the rods eventually break. Is that right?
        Yes. Implants are any hardware implanted during surgery.

        Originally posted by Tina_R View Post
        "If you think about the natural movement of the spine, especially with pedicle screws and rods, you'll notice that movement toward the posterior is nearly impossible, so swimming isn't necessarily risky. "

        This I don't understand. What do you mean movement toward the posterior? Why impossible?
        Take a look at this xray: https://www.bnasurg.com/treatment-op...lumbar-fusion/

        Think about what it would look like in a horizontal position, as it would be during a crawl swim. With the implants in place, do you think the swimmer would be able to increase their lumbar curve by flexing the necessary muscles (like trying to do a backbend)? A bad swimmer might be able to get a small amount of movement, but if you look at a good swimmer, they do not move their lumbar area. FYI, when I swam, I swam with a mask and snorkel at my surgeon's request, and of course, did not do flip turns.
        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


        • #19
          Originally posted by titaniumed View Post
          There can be stress, not so much on the procedure, but with self criticism upon failures. Self analysis on human nature and balancing risk.

          Mr Henry Marsh, a pioneering senior neurologist addresses these sorts of things after 35 years in the field.....Brain surgeries can have devastating failures..... He admits that surgeons are tempermental....
          https://en.wikipedia.org/wiki/Henry_...(neurosurgeon)

          "On Making Mistakes"
          https://www.youtube.com/watch?v=NJ92...DiseaseJournal

          If you do not want to watch the whole video above, watch from 27:40....

          https://en.wikipedia.org/wiki/Do_No_Harm_(book)

          Ed
          I can forgive mistakes because I can imagine how hard their job is. They should correct their mistakes if they can or refer the patient to someone else if they can't. Not try to minimize or obfuscate the problem.

          It's a terrible blow to a patient who is suffering from something that went wrong (and it may not be the doctor's fault) and who needs their doctor more than ever, to realize that the doctor only sees that patient as a symbol of his lack of success when he looks at her now and would like her to just disappear.
          Last edited by Tina_R; 12-30-2020, 10:59 AM.

          Comment


          • #20
            Originally posted by jackieg412 View Post
            Yes the orthopaedic knew about the arachnoiditis diagnosis but he did not believe in it. When he expressed that, I just felt that everyone is entitled to an opinion. But there wasn't another explanation for what was happening.. There isn't a cure or a well defined treatment but the pain pump and a lot of moving. So ,I really just continued seeing my orthopaedic. This is what we decided together.
            When the accident occurred, I really had to make a decision quickly and focused on the words you need a neurosurgeon. I never at that time, considered the orthopaedic. But when I recovered some I informed him.
            So months later, when I came to his office with current xrays he knew before I was there that I had broken my neck.
            One of his comments was" the new surgery hooked into my ( meaning his) rods.). I really thought the rods were mine because they were in me.
            His attitude and comments took me down when I was truly suffering from trama. I never told him, but I couldn't at that time. I just had to survive.
            So when I had further problems, I just stayed with the doctors at Rush neurosurgery even though they are farther away.
            The broken neck was true trama. Since it was bilateral right above the fusion it is a miracle that I have some problems but I can walk and move..
            Yeah, regarding arachnoiditis, there can be disagreement between doctors when things get hard to figure out. I asked about arachnoiditis and one of the doctors didn't think I had that. I'm being bounced from surgeon to neurologist and back right now. One can't see what the problem is from his perspective, so it must be that the problem lies in the other's domain. One of them insisted that few problems are unsolvable, yet nobody has solved my problem so far. Tests show a problem, but not a cause.

            That's a riot, that your doctor considered the rods his. I've come across possessiveness like that, too. Yes, it is terrible to encounter that kind of childishness and coldness just when you are suffering from trauma. You still feel gratitude for the good they have done for you and the turnabout in their attitude, that they now seem against you, is bewildering and painful.
            Last edited by Tina_R; 12-30-2020, 11:02 AM.

            Comment


            • #21
              I do think some problems are complex. It can be a multiple of things that present a certain way. While it is hard to focus on a day by day health issue, maybe a daily diary can help. Also, I have found it better not to try to tell anyone who has not dealt with scoliosis. They really don't understand.
              Just keep trying and maybe keep a diary of symptoms.
              Last edited by jackieg412; 12-30-2020, 05:05 PM.
              T10-pelvis fusion 12/08
              C5,6,7 fusion 9/10
              T2--T10 fusion 2/11
              C 4-5 fusion 11/14
              Right scapulectomy 6/15
              Right pectoralis major muscle transfer to scapula
              To replace the action of Serratus Anterior muscle 3/16
              Broken neck 9/28/2018
              Emergency surgery posterior fusion C4- T3
              Repeated 11/2018 because rods pulled apart added T2 fusion
              Removal of partial right thoracic hardware 1/2020
              Removal and replacement of C4-T10 hardware with C7 and T 1
              Osteotomy

              Comment


              • #22
                Originally posted by jackieg412 View Post
                No it was as different surgeon than the Dr that did the 2011 fusion. It was checked multiple times by xrays and CT scans. The doctors from 2011 are orthopaedic and the recent doctor is a neurosurgeon. According to the neurosurgeon, there isn't anyway to know if a fusion occurs for sure until you look during surgery. Most people find out when something happens. Once the rod was taken out last January, my spine moved and caused so much pain.
                Now I have 4 rods from the thoracic attaching to the lumber.
                "According to the neurosurgeon, there isn't anyway to know if a fusion occurs for sure until you look during surgery. Most people find out when something happens."

                I wonder what has to happen. Something drastic that can't be ignored? If it's just pain, they don't bother to check it out, they just prescribe pain relievers, I bet.

                Linda Racine just said that an x-ray may show an unfused spine, but it's probably not easy to read and not definitive.
                Last edited by Tina_R; 12-31-2020, 05:53 PM.

                Comment


                • #23
                  Originally posted by Tina_R View Post
                  I can forgive mistakes because I can imagine how hard their job is. They should correct their mistakes if they can or refer the patient to someone else if they can't. Not try to minimize or obfuscate the problem.

                  It's a terrible blow to a patient who is suffering from something that went wrong (and it may not be the doctor's fault) and who needs their doctor more than ever, to realize that the doctor only sees that patient as a symbol of his lack of success when he looks at her now and would like her to just disappear.
                  It is....and that's why I posted the Marsh video. Mr Marsh explains in the video about "Compassion vs Professional detachment" at 29:30, about his son having a brain tumor who almost died when very young, (How ironic) and having to be detached from patients since it's just way too much to absorb.... He mentions that we shouldn't lose our compassion, and that it's very difficult. It's the main reason why they become doctors and surgeons....it's not about the money especially after all the debt accrued after 18 or so years in school as a specialist. Add another 10 years paying off the debt and they really don't make any money until they are in their mid 40's.

                  When my goddaughter was in Med school years ago, I told her that she was going to see things in pediatrics that will be just CRUSHING...she mentioned that they talk about this....and the need for professional detachment or controlling one's self emotions when things don't turn out. They have to, because these sorts of things can kill you. This is probably what happened to Dr Weiss and that is probably why he is a bracing proponent now, and not operating anymore.

                  The one thing we need is hope. The hope that at some point somebody is going to have an answer. Finding that somebody can be especially difficult being in pain, but it's worth it. Sometimes you have to switch doctors with new ideas. Sometimes this search can seem endless for some, but wouldn't it be a shame if it didn't happen if there was an answer? Some of us have incredible stories of our struggles with scoliosis and deformity, the changes and the sacrifices can be huge....It dictated my life for many years but I do consider myself lucky.

                  And I do like a good story.....a good spine story. It's what gave me the bravery to proceed with my own surgeries. Dr Boachie, the Juma Genda story in 2006.

                  Here is another incredible story of hope, probably one of the worst deformity cases I have seen. 28 years of waiting on AS (Ankylosing Spondylitis) I can't imagine the pain....this guy is tough. They mention that he is also osteoporotic so recovery is a slow and delicate process....

                  Folded man
                  https://www.youtube.com/watch?v=1ycL...inaMorningPost

                  It's been a hard year.... 2021 will be much better.

                  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


                  • #24
                    Originally posted by Tina_R View Post
                    I wonder what has to happen. Something drastic that can't be ignored? If it's just pain, they don't bother to check it out, they just prescribe pain relievers, I bet.

                    Linda Racine just said that an x-ray may show an unfused spine, but it's probably not easy to read and not definitive.
                    I think it's the rare non-fusion that can be seen on plain x-ray. And, they're often not seen on any imaging. I think non-fusion problems can be difficult to diagnose, especially if it's more than a single level.

                    Since spine surgery has so many complications, I think it's probably a very good thing that most surgeons aren't willing to operate without the knowledge that there's a specific problem to fix.
                    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


                    • #25
                      Originally posted by LindaRacine View Post
                      I think it's the rare non-fusion that can be seen on plain x-ray. And, they're often not seen on any imaging. I think non-fusion problems can be difficult to diagnose, especially if it's more than a single level.

                      Since spine surgery has so many complications, I think it's probably a very good thing that most surgeons aren't willing to operate without the knowledge that there's a specific problem to fix.
                      But I have a hard time believing that there isn't a test that's less invasive than surgery and more invasive than imaging, say, a biopsy of the spine of some kind that could diagnose non-fusion.

                      I don't see treating pain with painkillers. Pain can be indicative of something seriously wrong. I don't see why you should have to endure pain until rods break. That sounds horrible, too, broken metal in one's body. Isn't that dangerous? Jackieg's x-ray of the broken rods after her accident, screws sticking out all over the place, gives me the shivers.
                      Last edited by Tina_R; 12-31-2020, 08:41 PM.

                      Comment


                      • #26
                        Originally posted by titaniumed View Post
                        It is....and that's why I posted the Marsh video. Mr Marsh explains in the video about "Compassion vs Professional detachment" at 29:30, about his son having a brain tumor who almost died when very young, (How ironic) and having to be detached from patients since it's just way too much to absorb.... He mentions that we shouldn't lose our compassion, and that it's very difficult. It's the main reason why they become doctors and surgeons....it's not about the money especially after all the debt accrued after 18 or so years in school as a specialist. Add another 10 years paying off the debt and they really don't make any money until they are in their mid 40's.

                        When my goddaughter was in Med school years ago, I told her that she was going to see things in pediatrics that will be just CRUSHING...she mentioned that they talk about this....and the need for professional detachment or controlling one's self emotions when things don't turn out. They have to, because these sorts of things can kill you. This is probably what happened to Dr Weiss and that is probably why he is a bracing proponent now, and not operating anymore.

                        The one thing we need is hope. The hope that at some point somebody is going to have an answer. Finding that somebody can be especially difficult being in pain, but it's worth it. Sometimes you have to switch doctors with new ideas. Sometimes this search can seem endless for some, but wouldn't it be a shame if it didn't happen if there was an answer? Some of us have incredible stories of our struggles with scoliosis and deformity, the changes and the sacrifices can be huge....It dictated my life for many years but I do consider myself lucky.

                        And I do like a good story.....a good spine story. It's what gave me the bravery to proceed with my own surgeries. Dr Boachie, the Juma Genda story in 2006.

                        Here is another incredible story of hope, probably one of the worst deformity cases I have seen. 28 years of waiting on AS (Ankylosing Spondylitis) I can't imagine the pain....this guy is tough. They mention that he is also osteoporotic so recovery is a slow and delicate process....

                        Folded man
                        https://www.youtube.com/watch?v=1ycL...inaMorningPost

                        It's been a hard year.... 2021 will be much better.

                        Ed
                        You don't realize my main frustration with my situation and my surgeon. I probably haven't made this clear. It isn't just that he's distant and detached, it's that he trying to put a distance between himself and me. He's failing to respond to my complaints, blowing me off, then acting like I'm somehow the problem. He wants me and my problems to go away.

                        When I innocently called his office about having trouble walking, the office went into what I consider medical malpractice defense mode. Obviously taking their cue from their employer. Shocking that that's the first thing on his mind.

                        I'll bet this is more common than you think.

                        I'm not going to go into details. I'm shopping around for somebody else. It takes time.

                        I hope his delay tactics haven't allowed my problems to become permanent.

                        Comment


                        • #27
                          Originally posted by jackieg412 View Post
                          I do think some problems are complex. It can be a multiple of things that present a certain way. While it is hard to focus on a day by day health issue, maybe a daily diary can help. Also, I have found it better not to try to tell anyone who has not dealt with scoliosis. They really don't understand.
                          Just keep trying and maybe keep a diary of symptoms.
                          Diaries are good for multiple reasons. I have been keeping one.

                          What do you mean, you have found it better not to try to tell anyone who has not dealt with scoliosis? You mean people in general, or doctors who are unfamiliar with scoliosis?

                          Comment


                          • #28
                            Originally posted by Tina_R View Post
                            You don't realize my main frustration with my situation and my surgeon. I probably haven't made this clear. It isn't just that he's distant and detached, it's that he trying to put a distance between himself and me. He's failing to respond to my complaints, blowing me off, then acting like I'm somehow the problem. He wants me and my problems to go away.

                            When I innocently called his office about having trouble walking, the office went into what I consider medical malpractice defense mode. Obviously taking their cue from their employer. Shocking that that's the first thing on his mind.

                            I'll bet this is more common than you think.

                            I'm not going to go into details. I'm shopping around for somebody else. It takes time.

                            I hope his delay tactics haven't allowed my problems to become permanent.
                            It seems they (Orthopedic and Neurologist) are not seeing anything that's screaming "operate here" and are in a gridlock. This has happened here before....

                            If you do have a pseudarthrosis, your most likely going to have to wait until a rod breaks.(if that is what it is) I don't know of anyone who has had any sort of exploratory surgery without good reason. They are not going to intervene surgically and possibly create more problems. They also have to appease the insurance company who writes the checks....They need that green light from the insurance company and right now, you have a yellow light. (proceed with caution) COVID also complicates matters since hospitals have high occupancy rates right now.

                            For pseudarthrosis on this study, CT seems to be the best diagnostic but it's not guaranteed....

                            Flexion Extension radiography (bending) is also another method...however....

                            FE radiography detected the pseudarthrosis by unveiling motion between the segments [37]. However, on the other hand, absence of motion does not necessarily correspond with solid fusion and the presence of motion is not directly related to pseudarthrosis
                            https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6702186/

                            The gold standard for the diagnosis of pseudarthrosis is surgical exploration [5, 7, 15, 16], an invasive, costly, and nowadays rarely used test which is not desirable or ethical in patients without symptoms.

                            You could have something else wrong that they have not discovered that is causing problems with your walking. I do hope that "someone" finds what is wrong as its terrible when things like this happen....Deep breaths.

                            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


                            • #29
                              Originally posted by titaniumed View Post
                              It seems they (Orthopedic and Neurologist) are not seeing anything that's screaming "operate here" and are in a gridlock. This has happened here before....

                              Ed
                              Can it be something as simple as a screw in the wrong place sticking out or even a tumor somewhere that could be causing back pain and/or nerve issues?

                              Would the MRIs that I have had all over my spine and neck show a tumor elsewhere in the body that could be pressuring a nerve outside my spine, or wouldn't they necessarily?

                              Comment


                              • #30
                                Tina, I think tumors will show. I've had scans that show growths(benign) in my thyroid. So I would think a good quality of scan would show a growth in the spine. I don't think a nerve impact is harder to diagnose.
                                An EMG could show that but not all of the time. My arachnoiditis was diagnosed by a myelogram and the non union in my thoracic was also diagnosed with a myelogram. It showed one level but the neurosurgeon decided to explore the full thoracic and it had never healed.
                                I still have to try to post the new xrays. It is going to be a long cold winter in Chicago so I should be able to figure it out.
                                T10-pelvis fusion 12/08
                                C5,6,7 fusion 9/10
                                T2--T10 fusion 2/11
                                C 4-5 fusion 11/14
                                Right scapulectomy 6/15
                                Right pectoralis major muscle transfer to scapula
                                To replace the action of Serratus Anterior muscle 3/16
                                Broken neck 9/28/2018
                                Emergency surgery posterior fusion C4- T3
                                Repeated 11/2018 because rods pulled apart added T2 fusion
                                Removal of partial right thoracic hardware 1/2020
                                Removal and replacement of C4-T10 hardware with C7 and T 1
                                Osteotomy

                                Comment

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