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  • #16
    Not that it matters, but I am sure that I remember Karen did not have hardware to begin with. I think I remember because she is like a friend of mine... they had their surgeries before hardware was put in. You were straightened and then put in a body cast for a really long time. My friend was 14 and was in a full body (torso) cast for a whole year. Just think of the implications for a young adolescent girl. Pretty terrible. She missed that year of school as well and couldn't go anywhere, of course. Flat on her back for a year, at someone else's mercy for all her personal hygiene needs, etc. Torture. And we complain! About 15-20 years ago or so it all went sour and her body lost out and she now has way over 120º curves. She has been to see topnotch specialists, but her bones are extremely fragile and everything is tangled, and there is nothing they can do. I remember having this discussion with Karen -- that there is an innate memory that, over time, your body wants to return to. I am not at all sure if that is true, but it would be interesting to see if someone can find some studies on that. I am sure that is why Dr. Lenke has advised you as he did. On the other hand, there are probably plenty of people who have maintained their "straightness" alright, but I sure wouldn't want to risk it. Best wishes.
    71 and plugging along... but having some problems
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

    Comment


    • #17
      "Innate memory"

      Good point Susie B- think about wearing braces for your teeth! if you stop wearing the retainer, your "straight" teeth will revert to the crooked position. it takes years for the new bone to grow to support the correct straight smile. so why would it be different for our spines? interesting ....
      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


      • #18
        Originally posted by gardenia View Post
        Who should do your Spinal Fusion? Was your surgeon a specialist in SCOLIOSIS???
        Is any surgeon specializing in the Spine and its branches good enough to handle a back with this particular deformity?

        Question is:
        After consulting with a well known head of the Orthopeadic Spine Surgery Dept at a well known California Medical School who recommended removal of implants because they are causing problems (iliac pedicle screws and surrounding back instrumentation after fusion) i.e. debilitating pains.

        I am in doubt because my original surgeon said: I am a specialist in Scoliosis and your other doctor is degenerative doctor, so does not deal with scoliosis patients

        Is this a valid statement? Please I need to know if that is an important consideration. I am assuming that everyone here has scoliosis so did everyone had surgery by an scoliosis surgeon?
        Gardenia: I cannot speak for any surgeons except the 2 that I contacted: Drs. Hart and Hu. Both said that they are specialists in "adult degenerative scoliosis". So, there are orthopedic surgeons that see adult people with degenerative changes in discs that cause scoliosis, like me.

        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


        • #19
          Hello Gardenia,

          My advice is scoliosis specialist is the direction to focus on. It is a very specialized speciality for adults. I did an exhaustive search, was willing to go anywhere and found my surgeon in your backyard. Dr. Gregory Mundis of Scripps Hospital. He is literally going to change my life and everything from his training to his bedside manner is impeccable. I had an ALIF fusion of L5-S1 this June with him and will have my scoliosis fusion next June T3-L4. He is leading incredible research on adult surgery and has focused his career on scoliosis.

          I had planned to consult with Dr. Garfin at UCSD as well and have heard great things about him but Dr. Mundis was the surgeon for me.

          Good luck.

          Jana
          Last edited by Jjohnsonphd; 07-29-2015, 05:44 PM.
          Diagnosed with idiopathic scoliosis at age 11
          Dr. Edgar Dawson of UCLA
          Braced and "stopped" below 50 degrees
          Age 25: 47 degrees, 48 degrees
          Age 38 (3 babies later): 60 degrees, 63 degrees and 2.5 inches shorter
          Age 41: 64 degrees, 70 degrees
          Dr. Gregory Mundis Jr. of Scripps Hospital, La Jolla CA
          June 2015-ALIF on L5-S1 for a slipped and degenerated disk
          June 14, 2016-T4-L4 spinal fusion with instrumentation
          Post-surgery: 16 degrees, 12 degrees and 2 inches taller

          Comment


          • #20
            We can go back and forth about whether curves will progress after hardware removal, but as none of us are doctors and few studies have been done on this, none of us can really say. It's probably a very individual thing.
            I can only state FOR MYSELF ONLY that:
            1: I remain EXTREMELY HAPPY that I had the hardware removal surgery twenty years ago. I could feel the metal in my back all the time. Whenever I used any of my muscles, I could feel the metal contract against the muscle. Horrible feeling!
            2: My curve has not progressed more than a few degrees if any since then.
            3: A non-scoliosis - that is, ordinary spine surgeon, removed it. But, that was twenty years ago and the spinal surgeon roles were not as defined then as they are now.
            4: Yes, the bone had grown over all the hardware and yes, it took 8 1/2 hours to get out; it had been in for ten years. I was in ICU for two days with a spinal catheter delivering pain meds directly to my spine, which worked great. After that I spent two months recovering before I went back to work. I did pool therapy and worked hard to get back in shape so I could go back to work.
            5: I asked Dr. Serena Hu about hardware removal after fusion to sacrum, and she stated yes, I could get it out after two years. She didn't give me any warnings about it although maybe she should have. I also asked two other Scoliosis surgeons and they both stated that they only did it if there was pain involved. No one said anything about the possibility of my lumbar curve progressing, or the thoracic surve above progressing. Maybe this is because we are talking about a T2- Sacrum fusion only, and maybe this is different than a hardware removal for long fusions. I would actually like to know whether there is any specific data on hardware removal for those of us who were previously fused and THEN were fused to the sacrum.
            Thank you.
            1st surgery: Fused T1-L3 in 1987 with contoured Harrington Rods. Rods broke at top.
            2nd surgery: Re-done two weeks later; fused C7-L3. Left in chronic pain.
            3rd surgery: Hardware removal 1997, but still pain for 30 years.
            4th Surgery: Fused to the sacrum in 2016. Came out of surgery with left foot paralysis. (Drop Foot) Can't walk on my own.
            I'm blessed to have found my peace and reason to live not from a husband or kids (I have none) but from God and within myself.

            Comment


            • #21
              I agree with above poster. I need emotional support from those who had Scoli surgery cause it's so different from other surgeries and yes some information but except for studies the info is someone's personal opinion not fact which not right on a patient forum? Also who is Linda and Ed? They work at medical schools, right? I think I have seen this said. What they do there? Do they see patients or what? If I wasn't in so much pain, I would become a nurse on a Scoliosis ward. I think it's too bad there is no one working with patients who has Scoliosis although I read somewhere there is a girl with Scoli surgery who is an operating room nurse for a Scoli doctor. Maybe if i get better I could become a medical assistant and work for a Scoli doctor and check Scoli patients in. At least then I could say I've had this surgery so I get your pain. Or I hope you feel better soon. No one in any office I've been to recently seems to say this anymore to patients.
              Last edited by moonglow; 07-31-2015, 12:41 AM.

              Comment


              • #22
                I am sorry that you feel that way about doctors staff. The office staff at UCI is amazing. They are always saying that they hope you feel better or that this surgery works. When I call with a question, they always ask how I am feeling.

                Even in NC, with the surgeon that messed my back up , his office staff was the same way.
                Melissa

                Fused from C2 - sacrum 7/2011

                April 21, 2020- another broken rod surgery

                Comment


                • #23
                  Jena and Dr Mundis

                  Originally posted by Jjohnsonphd View Post
                  Hello Gardenia,

                  My advice is scoliosis specialist is the direction to focus on. It is a very specialized speciality for adults. I did an exhaustive search, was willing to go anywhere and found my surgeon in your backyard. Dr. Gregory Mundis of Scripps Hospital. He is literally going to change my life and everything from his training to his bedside manner is impeccable. I had an ALIF fusion of L5-S1 this June with him and will have my scoliosis fusion next June T3-L4. He is leading incredible research on adult surgery and has focused his career on scoliosis.

                  I had planned to consult with Dr. Garfin at UCSD as well and have heard great things about him but Dr. Mundis was the surgeon for me.

                  Good luck.

                  Jana
                  Hi Jena:
                  I have consultations by both. Dr Mundis for my Pre Fusion but because of this first years in practice 3 years ago, I did not want to go with him and went with Dr Bridwell after. I have to agree that his bedside manners were the greatest and I just loved him. Dr. Bridwell had the experience but not the loving caring but I needed a plumber not a nanny so he did my fusion. But after 2 years and pain started in other manners, I went to see Dr Garfin who recommended removal. I went back to Dr Bridwell who was agaist it until at least the 3 years mark. I totally forgot about Dr. Mundis

                  Dr Garfin is also another great giant but similar to Dr Bridwell. Both were sure of their knowledge and are tops in their fields which means more 'my way is better'. I might go back to Dr Mundis for an arbitration.

                  Thank you so very much and good luck with your sugery.
                  This is where the young blood brings need clean opinions and little self centerness ready to consider other techniques. He was also trained under another dinosaur famous in the field Dr, A...(something)
                  Gardenia
                  Baja California, Mexico & El Centro, Ca
                  pre-surgery 75° and 89° - post ?
                  Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
                  T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

                  Comment


                  • #24
                    Dear Ed, I always listened to you and Linda

                    Originally posted by titaniumed View Post
                    Gardinia

                    The decision to remove hardware is not an easy decision......going back in there and dealing with bone overgrowth like Linda mentioned and scar tissue is not something to take lightly. Scar tissue can really cause problems....Remove your rods and you will re-curve in time. It almost defeats the main purpose of having scoliosis surgery to begin with. Karen Ocker posted about this years ago as it happened to her....I miss her posts

                    So glad they have the meds balanced out for you.....this being a challenge especially if undiagnosed comorbidities are present. I’ve seen this happen.....”Oh guess what, you have this now, and your on the wrong meds”. (Both of these cases were undiagnosed diabetics) and who knows what else.....

                    and it does make you wonder. And it’s a blessing when things are working.

                    Thanks for letting us know...

                    Ed
                    All you said is right however having my meds balance is great but am I going to become an addict? Now I am OK but will I be needing more in the future? Yes, the patch is great supplemented with Norco is very comfortable living. I am gaining weight which is nothing too great, I am seeing a cardiologist because of my lack of chest cavity is crushing my left lungs and lately my left foot was swollen and an XRAY showed a large dark area supposedly the heart but too large to be one. My left lunch has always pushing on my left lung and respiration has been difficult.

                    What a mess! Lots of times, when stretching/resting my back my vertebrea not fused would crack with rotation noise. Likely comes with the upper curve not included in the fusion.

                    Thanks, my friend.
                    Gardenia
                    Baja California, Mexico & El Centro, Ca
                    pre-surgery 75° and 89° - post ?
                    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
                    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

                    Comment


                    • #25
                      I am a researcher in a very busy complex spine center, and I do talk to patients every day. I am also fused from T4-S1. So, although I'm certain I'm not the only one in the world, I have a rather unique understanding of the subject of scoliosis surgery.

                      I'm sorry you're offended, but I don't understand it. I am not trying to scare people away from any type of treatment. Do you not think patients should have all the information they need to make informed decisions?

                      For the record, if I thought my implants were causing my pain, and my surgeon agreed, I'd have my implants out in a heartbeat. I posted the information about implant removal because I was asked about it.

                      Ed is not a medical professional, and I've never seen him infer that he was. He is simply a patient who has been involved in this forum for a very long time, and who helps people out with information whenever he can.

                      --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


                      • #26
                        Originally posted by mabeckoff View Post
                        I am sorry that you feel that way about doctors staff. The office staff at UCI is amazing. They are always saying that they hope you feel better or that this surgery works. When I call with a question, they always ask how I am feeling.

                        Even in NC, with the surgeon that messed my back up , his office staff was the same way.
                        Maybeck:
                        I'm happy that you feel you have nice doctor's office staff. However I was talking about my own doctors, not yours. In my old health system, they were trained to say that they were sorry you were going through this. It was nice even the phone bank people said it. But now it's been a log time since anyone said that to me except the MRI girl was nice and one medical assistant of my pain doc is very nice. I would still like to be a medical assistant as I think you move around a lot and don't sit at a desk that much. This might be good work for those with Scoliosis surgery. If there are any medical assistants on this forum please let me know. Linda if you are spinal researcher do you write papers and stuff on Pubmed we can read it?

                        Comment


                        • #27
                          Originally posted by dixiesmommie
                          I'm actually starting to feel very offended by the post's I have read over the last few weeks regarding hardware removal. None have been posted by a medical doctor but most have been geared to scare those who have gone through Hardware removal. I want to stress my hardware removal was due to a very serious infection that spreaded through my spinal cord. Having self proclaimed experts stating ignorant comments about my future is very offensive. @Ed, hardware removal does not mean you will curve again. Yes Linda has posted studies involving some people. Those people have not had their hardware in even half as long as either me or the other girl Tableone who I have followed very closely. I joined this forum for support and I have received nothing but disputes on everything my doctor has told me. I'm starting to feel this is a very bad place for someone who is truly looking for support.
                          Dixie, Its not so much scaring as it is “informing” that the decision is critical. Critical decisions need plenty of thought, and multiple opinions help, and one doctor can be wrong and so can a group of doctors. I am only swinging the axe to prove a point. We are only human.

                          I was wrong in saying that it “will” happen, sort of like saying that throwing a cigarette out the car window will set the woods on fire. I guess it doesn’t always happen.

                          My post had to do with Gardinia’s “elective” decision on her implant removal in which she has or had that choice. I didn’t know that you had an infection, (Or Lori) and I’m so sorry that this had to happen.....I feel for you guys, you didn’t have a choice. Its one of the things that I or we worry about in having such a monumental procedure.....I am not a medical professional and I know that you don’t want to see posted studies, but I have seen the words “Inevitable” used in studies. Sort of like the prostate cancer stats in males over 55. Maybe that isn’t inevitable, but the stats on this are bleak. I try not to worry about all of this but I’m not offended, just informed. We need to know, but not anticipate.

                          Many of us don’t have a choice.....and I also didn’t, so I do know and feel what that is like. If I read and don’t post, I feel the vibes and think about you guys...

                          I think that Gardinia made a good choice in reviewing her situation with Dr B. There are specific reasons why he felt the way he did.

                          We re-model all our lives.....this is basic knowledge. When and why might not be known, and scolis can maintain shape for long periods of time.....but one thing that matters is age.

                          Karen Ocker like Suzie Bee mentioned, was a cast scoliosis patient (without implants) that was done by Dr Cobb around 1958. Its one case, but she did re-curve at some point, we don’t know when, the most logical conclusion would be that it happened in her elder years. She is a medical professional and has posted extremely valuable information here....her posts on ALIF complications had me thinking and understanding.....after I was having gall complications after my scoliosis surgeries. It was truly support in the fact that it might have been a warning, but it was an education process. If something happens to me, at least I have an idea....

                          Who am I? I sit at the table and try to contribute something of value if at all possible. I try to offer some sort of support and or emotional support which is hard being a male in a female dominated forum, and internet communication lacks in the communication process. Maybe some day we can all meet up at an arranged meeting and meet one another.....

                          I have changed my views and learned a lot about scoliosis by reading thousands of threads and posts here......I think that this forum is important for us and that all the posters here contribute.....Even the alternative posters like Flerc who constantly look for non-surgical answers (smiley face) Its hard for us who have suffered and gave up to pain, did surgical procedures, to look back at what we did for decades, battling this damned disease.....

                          We do have an older group here......and some have really have had a long road at the scoliosis table. This testimony makes people think about our hardships, and it does act as a catalyst for knowledge, and understanding the disease or affliction.

                          There was no forum available many years ago, and we all had to suffer silently........that was hard, remember?

                          I hope you can control your pain somehow......I do understand how frustrating it can be.....

                          I also really appreciate Linda’s moderation here.....

                          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
                            Originally posted by gardenia View Post
                            am I going to become an addict?
                            Thanks for the appreciation Gardinia...

                            Becoming an addict will be up to you. Your doctor “should” provide support in the direction YOU wish to take.....

                            If you are comfortable and can stay comfortable, that’s a good thing. If you are not, tell your doctor then change should be attempted.

                            My neighbor was taking 38 meds per day for years......She moved down to California, did a doctor switch and is now on 4 meds and doing fantastic. This is why I say “support”. Her doctor did not support her when she was my neighbor, and collected the percs from the drug companies. Are we an overmedicated America? In her case, by 34.

                            If they know what 1 drug does, that’s great. If they know what 2 drugs taken together does, that’s incredible. How about 38? What do you call that? Complicated?

                            (I’m not a medical professional, I just wonder a lot)

                            I cant continue for a few days because I’m going camping in the high Sierras in the morning and chances are I will not have internet connectivity.

                            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
                              Remove or not remove the hardware screws in the sacrum

                              Dr Bridwell, said NO.
                              Dr Garfin said YES (you can look at his speech in one of his conferences and he explains why)

                              I decided to wait a little longer as my pain is being controlled by the patches. I happen to know my body and work with my meds closely. One can even call me a hypochondriac but actually I am aware of every change in my body instead of ignoring the pain, changes, aches, reactions...

                              Dr. Bridwell scared me enough about my lower back collapsing if I removed the hardware and said that 'if' he thought that I could be a good candidate, he would re-work T11 that did no fuse and now fractured T10 plus T9 & T8.

                              The IF is from getting terribly ill with the inflamation of esonophils in my digestive tract that required Prednisone (slows or destroys fusion?) and now I am continually taking 4 vials daily of Cromolin with water that seems to keep everything under control.

                              Now, there has been a couple of episodes that the patch Fentamyl that did not seem to work and my walking hips were in angry pain that I swear I would consider removing the bottom anchor screws.

                              About the debates that seem to be floating around ready to explode, I too, when I was 12-14 that the doctor recommended fixing of the curve with resting 6 monts in a cast in bed, operating to put in springs, then 6 months on a cast again then a revision in a couple or years to re stretch the curve. But, then he said unless you aspire to go into a beauty contest, then skip it. You will be fine. I was fine until 35 years old after giving birth to a 8 8oz baby girl then 4 years later with another. After both, I was limited with carrying weight and pain was quite constant but I was also travelling international to South America almost 2-3 times every 6 weeks. Lugging the luggage was hard and later paid the price.

                              I come to this forum to express my experience 1) to unload 2) share and find that others also have the same 3) find to find sound advise or alternatives. Everyone has an opinion, Nobody should take advise from this forum literally, must consider your own situation. I appreciate all points of view and this is a great forum.

                              OH, BTW I was never in a beauty contest... but my life was a great success. Have a super great husband with 2 marvelous daughters both about to complete their PhD and am retired happily thanks for my life of hard work, good planning, and great opportunities granted by those above us directing our destinies.
                              Gardenia
                              Baja California, Mexico & El Centro, Ca
                              pre-surgery 75° and 89° - post ?
                              Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
                              T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

                              Comment


                              • #30
                                Originally posted by dixiesmommie
                                Apparently your studies just don't apply to all. It is my understanding you are the moderator ,therefore you are just here to make sure the rules of the forum are upheld.
                                Unless it's a case study, studies NEVER apply to all.

                                And, are you joking that I'm just here as a moderator?
                                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

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