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  • #16
    Sorry if I misread your post. So if you're not angry and depressed then obviously a therapist isn't appropriate. I had read lots of posts and obviously confused you with the post that was in front of this one.

    I hope that you don't stop posting as you represent a person that has a valuable message to share. You represent my biggest nightmares and are what I fear might happen.

    I hope that you are having a good day today. I will miss your perspective if you do not come back. 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


    • #17
      Originally posted by susancook View Post
      Sorry if I misread your post. So if you're not angry and depressed then obviously a therapist isn't appropriate. I had read lots of posts and obviously confused you with the post that was in front of this one.

      I hope that you don't stop posting as you represent a person that has a valuable message to share. You represent my biggest nightmares and are what I fear might happen.

      I hope that you are having a good day today. I will miss your perspective if you do not come back. Susan
      Susan,

      If he leaves, you can continue to enjoy his perspective on SSo... here are his posts...

      http://www.scoliosis-support.org/sea...archid=1093246

      I hope he stays here though because every testimonial is valuable. I wish we had far more posted.
      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


      • #18
        Cornerthree,

        I’m a little late here.....the story of my life.

        I am so sorry this happened and your posts are appreciated here.

        You have to realize that many things have changed in the scoliosis world in the past decades. I had twin 50’s in 1974 and elected to wait due to skiing. I was also fortunate that I didn’t progress at a fast rate and it bought me time. I knew I would have surgery at some point back in 1974. I also dodged the Harrington rod era which was a good thing....it was what they had at the time.....things are truly better now, technology is advancing.

        I think the best way to know what a full fusion is like is to wear a full brace. I had a full brace made by Copes for skiing. This was my main reasoning for this brace, and it served its purpose at that time. Maybe it should be mandatory to wear a full brace so patients will know exactly what it feels like. Wear it for a month or two so there are no surprises....It doesn’t have to correct any curves, it would serve as a prep tool, understanding what fusion is about. I knew what I was getting into, of course I didn’t have any choice in the matter. My pain was beyond belief right before my surgeries.

        Internet communication is so difficult....but having this forum is a good thing. It was something I could have used through the years. (pre-internet) The best way for a prospective surgical candidate to make decisions is to read here and attend local scoliosis meetings!!!!! For those readers that are in this position, please DO THIS. There is nothing like meeting people and talking these things over. It’s a surgeon, patient, information exchange that shouldn’t leave any doubt. If there is any doubt, keep going to meetings until all questions are answered. My surgeon wanted me online and attending meetings before surgery.

        I didn’t read all the posts here, but I also have been reading Linda’s posts for many years, even before registering here, know her, and totally respect her work. When it comes to our problems, there are no stones that should be left unturned, all aspects of the disease including our depression status should be addressed, God knows how many times I have screamed at the sky. I do try to talk about feelings, any missed subjects, its not an easy thing to do....and this is a public forum. I think its something that needs to be addressed, all the internal problems I or we have tackled living with scoliosis through the years.

        So, back to your statement about surgery being a last resort. I have to agree and disagree. Yes, scoliosis surgery is invasive, yes, there are complications, and yes pain control is not a guarantee. It kills me reading about those that are hurting and makes me feel so bad since I came out so well. Complications need to be addressed and understood. There are a whole host of things that can go wrong, But,but,but, there are many who do come out well. I being one of them. Now, on the flip side, my surgeon wanted to know why I waited so long? My spine was rotting away from degeneration, and my surgeries became extremely serious. I cant say I lost lower levels but the magnitude of waiting, involves things involving degeneration issues, lung issues, nerves becoming encapsulated by bone and bone spurs.....etc etc. So, now you can see why I can disagree but understand why you feel the way you do.

        I truly hope that you can come to a resolution, possibly trust a good revision surgeon and possibly get yourself fixed. What choice to we have? I knew from the start and was guaranteed 100% that something would go wrong with my surgeries. It’s the risk we have to take, and we have to be extremely brave souls to do this.....If my trust lacked with my surgeon, I wouldn’t be making these posts today.

        Scoliosis surgery can be a tough route. I tackled my recovery without looking back, and having a positive attitude, a mental acceptance of change that overrode all thoughts.

        Please keep us informed as we do care.

        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


        • #19
          It seems the surgery cornerthree is speaking of is no longer performed. If I was facing a life of pain and disability due to scoliosis, I would concentrate on reading patients' stories who've experienced spinal surgery with modern instrumentation. I don't think the two can be reasonably compared.
          Surgery March 3, 2009 at almost 58, now 63.
          Dr. Askin, Brisbane, Australia
          T4-Pelvis, Posterior only
          Osteotomies and Laminectomies
          Was 68 degrees, now 22 and pain free

          Comment


          • #20
            Originally posted by Pooka1 View Post
            Susan,

            If he leaves, you can continue to enjoy his perspective on SSo... here are his posts...

            http://www.scoliosis-support.org/sea...archid=1093246

            I hope he stays here though because every testimonial is valuable. I wish we had far more posted.
            Thanks for Scoliosis support forum. I did not know it existed.
            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


            • #21
              Originally posted by JenniferG View Post
              It seems the surgery cornerthree is speaking of is no longer performed. If I was facing a life of pain and disability due to scoliosis, I would concentrate on reading patients' stories who've experienced spinal surgery with modern instrumentation. I don't think the two can be reasonably compared.
              I totally agree.

              As Pam would say a few years ago, if anyone even suggested using a Harrington Rod, they should run....and run fast. So true..

              No individual vertebral anchoring which means no rotational correction unless used with wires (and that was limited through the lamina which is centered) No individual coronal correction, relying on extending over 2 hooks over many levels with no control of levels between the hooks.

              No decompression or sagittal angular adjustment. No lordotic or kyphotic curve rebuild. Flat back issues.
              Large painful hardware. Hooks, no pedicle screws. Not a low profile system.
              Compression rods pulling down on discs.??? Sounds hard to believe.
              Generally a posterior only surgery, no ALIF or TLIF or XLIF for balanced fusion.

              What else am I missing? material science....removal process of impurities has improved in the last 20 years. Impurities could affect corrosion rates....

              It was a 50’s invention to help extreme scoli's from curving into knots......

              A thing of the past....there is no comparison to the way its done today. Its like comparing a model T ford with a McLaren F1.
              http://en.wikipedia.org/wiki/Model_T
              http://en.wikipedia.org/wiki/McLaren_F1

              Technology has advanced.

              Jen, If you could, ask for the drawbacks of the Harrington rod compared to modern scoliosis surgery hardware systems on the Australia forum, there is a surgeon that posts there. Would love to read the comments.

              Ed
              Last edited by titaniumed; 12-15-2012, 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


              • #22
                Jen, If you could, ask for the drawbacks of the Harrington rod compared to modern scoliosis surgery hardware systems on the Australia forum, there is a surgeon that posts there. Would love to read the comments.

                I've asked the question Ed. I also asked him if he has any personal experience with Harrington rods. Sometimes it's weeks before an answer shows up, but I'll keep an eye on it and let you know.
                Surgery March 3, 2009 at almost 58, now 63.
                Dr. Askin, Brisbane, Australia
                T4-Pelvis, Posterior only
                Osteotomies and Laminectomies
                Was 68 degrees, now 22 and pain free

                Comment


                • #23
                  Yes, Cornerthree is talking about Harrngton rod surgery. But his/her? comments about the results of fusion are still relevant. The spine fuses with today's instrumentation, too. It seems like Corner's chief complaints: loss of flexibility, inability to use back muscles appropriately, stress on hips, etc. all are pertinent to today's techniques, as well. I'm just pointing this out because I think it's exactly right that you can't really know what it's like to have a fused spine until it's done. I don't want people to dismiss Corner's comments because it is an outdated surgery. Someday pedicle screws will be outdated, too. Just sayin.
                  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


                  • #24
                    It has been noted that this link doesn't work for some reason. He posts as "Tableone" on SSo. Here is the same thread starter... let's see if it posts correctly...

                    http://www.scoliosis-support.org/sho...385#post249385


                    Originally posted by Pooka1 View Post
                    Susan,

                    If he leaves, you can continue to enjoy his perspective on SSo... here are his posts...

                    http://www.scoliosis-support.org/sea...archid=1093246

                    I hope he stays here though because every testimonial is valuable. I wish we had far more posted.
                    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
                      Originally posted by Pooka1 View Post
                      It has been noted that this link doesn't work for some reason. He posts as "Tableone" on SSo. Here is the same thread starter... let's see if it posts correctly...

                      http://www.scoliosis-support.org/sho...385#post249385
                      Okay that works for me.
                      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


                      • #26
                        Originally posted by Lorz View Post
                        I agree that the doctors fail to tell us the reality of what we will feel like, and that many of the people on this forum only discuss the positive outcomes, and not the negative. I have asked myself many times why I am in the minority? Why do I feel the hardware, and also feel like I am wearing an internal straight jacket, when everyone else says how wonderful they feel? I think there are more people like us who are less than thrilled with their surgery. They just are not posting.
                        First of all let me say that my heart goes out to you, and to the original poster and to anyone else who is suffering post-surgery.

                        Ironically, I always thought the opposite - that people who post on these sites were the ones in need of support and that those with good outcomes (whether from surgery or otherwise) were off living life and not thinking about scoliosis. Of couse, I could be wrong :-)

                        I also agree with what you and others have said that fusion surgery should, of course, be an absolute last resort.

                        Best of luck to you.
                        Last edited by mariaf; 12-15-2012, 11:43 PM.
                        mariaf305@yahoo.com
                        Mom to David, age 17, braced June 2000 to March 2004
                        Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                        https://www.facebook.com/groups/ScoliosisTethering/

                        http://pediatricspinefoundation.org/

                        Comment


                        • #27
                          HiCorner3

                          Hello, well I am a lurker, still planning to have surgery - and I truly appreciate reading your honest words, and I can relate to what you described! I feel what you describe NOW, with my twisted body. My Left back is always feeling like it needs a good stretch- which is impossible with my curve. I get what I describe as charley horse aches in that side- and I can't do a thing to relieve the pain. It' s not really "pain" in the traditional sense either- it's the tight muscles, and the right side of my back is always stretched and I try to twist and extend my spine and try to get relief all the time. Now, I've thought about being totally stiff post-op; I do get lazy and slouch in bed, and I think " i will never be able to do this post-op" and maybe slouching is bad for the spine. But - I am making an educated guess. Perhaps- if I do nothing- perhaps my spine will stabilize and I will live with pain and achey muscles. But what if I get degenerative changes? ( already have some) what if I get osteoporosis and lose vertebral height? then I will have to face surgery at a greater risk for post-op complications. I'm so sorry you have such pain, so sorry you feel so trapped by your spine. PLease continue to post, you bring a sense of balance to the forum, and it helps to hear and learn from everyone's experience. God bless you, Jamie in TX

                          PS- need to change my signature now older, and surgery postponed due to a new job with probation period
                          57 years old.
                          thoracic curve 68 degrees
                          lumbar-sacral curve +/- 41 degrees
                          Cspine C3- C7 fusion Nov. 2011 <done! success!!>, then scoli surgery T2- L4 or maybe to sacrum.
                          Discogram/ myelogram pending. Surgery to be scheduled, maybe fall 2015. <scared but I know this is not going to get better>
                          THANKS TO EVERYONE FOR SHARING EXPERIENCES AND KNOWLEDGE!

                          Comment


                          • #28
                            Amicable discussion on an important issue, thanks to the OP for sharing. I responded to his post on the UK forum and wow, the fat hit the pan! :-)

                            "Surgery as a last resort." In the USA and the UK, many kids with curves around 40°, some only 10 yrs, are put on surgical lists. Many are braced--a surgical adjunct--until their number is called. Almost invariably, a 40° 10 yr old sausaged into a brace worsens rapidly out of the brace. Surgery, in the UK and USA, is the ONLY RESORT of which people are made aware.

                            I read in this forum of many people who lead active lives until their 50s and 60s, then accept surgery. I haven't read a single account of anyone wishing they'd done it earlier.

                            As for other alternatives/resorts, these are poorly researched, delivered mainly by non-invasive sharks (maybe termites is a better description) and given bad press by 'the surgeon' who, almost by definition, hasn't a clue about their efficacy.

                            Nb: the OP doesn't give me the impression of someone looking for emotional support. I read his post as commendably inspired to support others grappling with life-changing decisions.

                            Another poster made a salient point about spine FUSION remaining notwithstanding new, EXPERIMENTAL instrumentation.

                            My own interest in this discussion is to ensure that I make eyes-open decisions about my daughter's life. If she was at 50 degrees, after having read what I've read about fusion, I would not sign her up for surgery.
                            07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
                            11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
                            05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
                            12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
                            05/13: (12yrs) <25, >22cms height, puberty a year ago

                            Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

                            Comment


                            • #29
                              I think if everyone posted before and after radiographs for ALL treatments... surgical, conservative and alternative, we would cut to the chase very quickly. Intent to treat is the only indicator and it would be VERY important to sort out the various forms of scoliosis and the age of the patient. There is no global statement that will cover every patient.

                              For example, it is known that Marfan's scoliosis is not amenable to brace treatment and that JIS is much more amenable to bracing than is AIS. Also, not all fusions are equal. Fusion of T curves has been shown to stabilize the spine including the L curve for at least two decades (the length of hte study) with minimal impact in remaining discs for all patients (small study though). Other fusions, those that are largely in the lumbar or that extend below about L3 are known to be problematic. The OP had an H-rod to L3 or L4. Those patients often need revision as I understand this... even pedicle screw constructs are not a stable, long-term solution necessarily when they extend that far in to the lumbar. It's all just biology and physics. Also, I think people are losing their lumbar due to waiting too long to fuse the thorax. I would not want that on my head if it were my child. These are tough decisions and we can only do the best we can. It is impossible to assess this without careful denotation of what is what because "scoliosis" is a word that denotes many different and varied cases.

                              Before and after radiographs, while abundant in the surgical sections, tend to be conspicuous by their absence in the bracing/PT threads. Martha Hawes has done this and did improve her curve but it seems like that resulted from the change in her chest cavity shape. She was not trying to decrease her curve but was only trying to avoid respiratory symptoms. I think she was blind-sided by the curve decrease. Anyway, that was JIS so all the AIS cases might be disappointed if they don't follow suit. Another case is the guy who did post his before/after PT radiographs, it was obvious he just decreased the compensatory lumber through exercise and/or postural change. The structural T curve was not affected and may have gotten a bit worse. The only way bracing and PT can gain a foothold is with evidence of efficacy which is hard to come by when even large curves stop progressing on their own as seen by a few cases on this group.

                              Normal is off the table. It's a game of cutting loses in my opinion. People who don't have rabid curves have time to try different things. Some kids don't have that luxury.
                              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
                                Originally posted by TAMZTOM View Post
                                I read in this forum of many people who lead active lives until their 50s and 60s, then accept surgery. I haven't read a single account of anyone wishing they'd done it earlier.
                                People who wait until their 50s and 60s are often adult generative offset scoliosis OR people who didn't have an option of having this surgery in their teen years (me being one of the second group). The surgery was never offered to me in the country of my birth because they just didn't do it there. Then, when I immigrated to the US, I never had time for it and it was not too bad. Things went downhill after I turned 40. I don't regret not having it done earlier, but if I were born here, I would definetely have this surgery done in my teen years.
                                I am stronger than scoliosis, and won't let it rule my life!
                                45 years old - diagnosed at age 7
                                A/P surgery on March 5/7, 2013 - UCSF

                                Comment

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