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  • Considering surgery

    Hi all. I've been lurking around here off and on for a couple years. I was always someone who said I'd NEVER get surgery for my scoliosis (64 degrees thoracic, 64 degrees lumbar), but my chronic pain has become so overwhelming, I'm truly considering it for the first time. I am turning 40 in less than two weeks and I feel like I'm turning 80. I've tried just about every non-surgical treatment under the sun and am at the end of my rope.

    My fears -- I am an actress and yoga teacher and I worry I'd lose my ability to make a living (and these are my passion in life). Without freedom of movement, I don't know what I'd do. I'm terrified.

    I'm also very nervous about the fact that while surgery might help my curvature from getting worse (I've been holding steady for the past 3 years with the help of exercise), I might end up with all sorts of complications and new pain and new medications.

    I trust my spinal surgeon -- Dr. Christopher DeWald in Chicago -- and I've been seeing him for about 5 or 6 years. He said I'd really have to think seriously about surgery when the pain became overwhelming or when I hit 70 degrees. I see him on January 10th for my annual check-in and I think I might have to tell him I need surgical intervention.

    I am getting so very depressed as I'm not living a full life with the amount of pain I have...but I'm scared that life after fusion will be even more limited. I'm between a rock and a hard place.

    Please help -- any support, suggestions, or person stories would be greatly appreciated.
    Thanks so much!

  • #2
    Welcome to the forum! It sounds like you're going through that really difficult phase when you're deciding there's no choice but to go for surgery. On the one hand, it's hard to imagine you need such major surgery, and if you never thought you would, it's even harder, but eventually, it gets easier as you become more accepting. I guess we're all different, but that time between being told by my surgeon I needed surgery within 12 months and becoming accepting of it, was very, very hard. It took over my every thought, I stopped sleeping and I became depressed. I cancelled my first surgery date and went on anti anxiety meds which helped a lot. Then came the next phase, acceptance that it had to happen, and getting as fit as I possibly could, in order to be in the best physical condition possible for the surgery. That phase was far easier and the fitter I became the more I knew I could do this, and by the time my date came around again, I wasn't nervous at all (after being absolutely terrified.) I just wanted to get it over with and get on with my life. I also enjoyed being fit so much, I decided I'd continue exercising forever, and I still do.

    As for flexibility, again, we're all different. Physically, it depends on how low your fusion extends, but there are some of us here with fusion to Sacrum and pelvic fixation who can do pretty much anything we want. Others not so much, so it's really impossible to tell, especially without more information, how much flexibility you'll lose. But as a yoga teacher, you're likely to have good flexibility and eventually you should regain much of it.

    I wish you well and recommend you ask as many questions as you can because part of the fear of this surgery is the unknown. Get your answers, and much of the fear dissolves.
    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


    • #3
      Thank you so much for you kind note. I appreciate it more than I can say. I am so relieved to hear I'm not the only one who had doubts when I was told I should have surgery. I almost wish I had no choice in the matter...if the decision was cut and dry, I think I wouldn't be in so much emotional pain about my choice. I started taking some meds and seeing a therapist to help me make a decision.

      I find your signature (NO PAIN! my goodness, that's a dream of mine!) to be inspiring. Your right hip was very similar to my own and it's where much of my discomfort takes place the days. I can barely sit for more than five minutes without intense discomfort. I see in your "after" photo that your hip is dropped dramatically and it sounds like you have had a great amount of relief in that location.

      The absolutely truth is while I'm terrified of being limited in movement, these days I'm already limited in the activity I can do because of my pain. So, while I'm so scared about the potential loss in my life, I'm already facing that loss without surgery.

      This has been a very long road, but it seems to be coming to an end.

      Comment


      • #4
        HI, I am Jackie. I see that you may be living near me. I live south of Chicago. Since you have your Dr appointment coming up---start writing down questions. Bring someone with you when you go.I have had surgeryalready,but I had to seek out many opinions first. You can private message me and I will say more on that.
        It is a huge thing for anyone, but in your line of business,you may have to create different ways to still get done what you need to.
        No one will ever tell you differently{that is the people already fused} You will be able to do somethings,but maybe not others. Or you will have to change the way you get to the same goal. I know that I have to to it that way.
        Ed has a major level fusion,but seems very capable,so he may be a good source of info.
        I know, I remain worried about aging with this fusion. My entire spine is fused.
        This may not help your debate,but it is necessary to be realistic about maybe needing to change some things after fusion surgery. Ask any one of us--we are here to help!
        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


        • #5
          Hiya Jackie! Thanks for your note. How long ago did you have your surgery? Any regrets? You mentioned it was your whole spine -- I'm assuming you mean T1--sacrum or so, is this right? I'd be close, although my doc has always said he can't guess how far down fusion will extend until the actual surgery.

          Most importantly -- has your quality of life improved?

          Comment


          • #6
            thatrobyno, you are not alone. There are several regulars here whose greatest fear was/is the loss of flexibility. Although we vary, the vast majority of us manage to get on with life as normal, doing some things slightly differently from before. But I think most of us too, do notice the loss of flexibility initially. I think it's a matter of weighing up all the pros and cons, when we make the decision for surgery.

            I have no pain whatsoever, but when I look at that photo of my hip, I wince. That photo is the only photo I have of what my back looked like. Mostly I just ignored it, was in denial, but seeing that photo certainly brings it home to me that I made the right decision. My greatest difficulty pre-op was standing. I'd dread a queue at the Post Office, the supermarket, the bank. Standing at the kitchen bench was a trial. But now I can stand all day if I want to.

            Bending isn't a drama. I crouch or spread my legs and go down like a giraffe. Twisting round to see over my shoulder is less easy, so I need to turn my whole body. There isn't anything I can't do. I compare that to increasing daily pain, my severe pain when standing for anything longer than 30 seconds, to the increasing deformity, and the sure knowledge it was all going to get worse. For all these reasons and more, the decision was made for me. It didn't make it any easier, and many here struggle with that decision. I say this because I don't want you to think you're alone in this. I hope you hear from others who feel the same way.
            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


            • #7
              I have not had surgery, but I think that my time has come....I have had 2 denervations, 2 different steroid inj twice [2 different locations]. I was at the airport yesterday waiting in line. I told the customer agent that I couldn't stand for long. Fifteen minutes later, I had lying on the floor in agony. I think that my time may also have come to consider surgery.

              I have gone through all that you said, denial, tears, anger, depression....Anyone who is not frightened about this surgery is nuts! It is scary, and really being a optimist....I am surprised how pessimistic I am ! I'm sure that I will have a dural tear....on and on. Then I think, I can't lie on the floor for the rest of my life when there is a line. I read something that Ed wrote [I can try to cut and paste and send to you on your reg email as it is too long]. About 2 sentances in, I started to cry. He really spoke to my fears and the fact that I needed to either go for it or just lie on the floor. After a good cry, I decided to reconsider the surgery. I have an appointment next Tuesday with my surgeon and then I will have a second opinion and then I will go with one of the surgeons....I think. For me, I have decided to "let go" and put my complete trust in whatever surgeon I choose, and relax [not going to be easy] and TRUST.

              Can you do yoga and be an actress? I don't know. Can you continue to live like you are [and join me lying on the floor]? I don't know for you, only you know.

              I wish you the best in your decision making. Meet up with women who have had your projected surgery in Chicago and check it out....your doctor will give you some names. 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


              • #8
                Originally posted by JenniferG View Post
                I have no pain whatsoever
                I aspire to your current condition

                It's the twisting I'm mainly concerned about from a career-perspective. Having the ability to twist toward camera is integral to my work. I've been trying to find out how long Isabella Rosellini's fusion is! I wish I knew.

                You're very kind to be so generous with your answers and support. Thank you.

                Comment


                • #9
                  Originally posted by susancook View Post
                  Then I think, I can't lie on the floor for the rest of my life when there is a line. I read something that Ed wrote [I can try to cut and paste and send to you on your reg email as it is too long]. About 2 sentances in, I started to cry. He really spoke to my fears and the fact that I needed to either go for it or just lie on the floor. After a good cry, I decided to reconsider the surgery. I have an appointment next Tuesday with my surgeon and then I will have a second opinion and then I will go with one of the surgeons....I think. For me, I have decided to "let go" and put my complete trust in whatever surgeon I choose, and relax [not going to be easy] and TRUST.

                  Can you do yoga and be an actress? I don't know. Can you continue to live like you are [and join me lying on the floor]? I don't know for you, only you know.
                  Susan -- you are singing my song. I spend most of the time I am not working on the floor. Ugh. I'm so sick of my floor

                  I am definitely going to ask my surgeon for some names of people who have had surgery. I want to leave no stone unturned.

                  Comment


                  • #10
                    Originally posted by thatrobyno View Post
                    Hi all. I've been lurking around here off and on for a couple years. I was always someone who said I'd NEVER get surgery for my scoliosis (64 degrees thoracic, 64 degrees lumbar), but my chronic pain has become so overwhelming, I'm truly considering it for the first time. I am turning 40 in less than two weeks and I feel like I'm turning 80. I've tried just about every non-surgical treatment under the sun and am at the end of my rope.

                    My fears -- I am an actress and yoga teacher and I worry I'd lose my ability to make a living (and these are my passion in life). Without freedom of movement, I don't know what I'd do. I'm terrified.

                    I'm also very nervous about the fact that while surgery might help my curvature from getting worse (I've been holding steady for the past 3 years with the help of exercise), I might end up with all sorts of complications and new pain and new medications.

                    I trust my spinal surgeon -- Dr. Christopher DeWald in Chicago -- and I've been seeing him for about 5 or 6 years. He said I'd really have to think seriously about surgery when the pain became overwhelming or when I hit 70 degrees. I see him on January 10th for my annual check-in and I think I might have to tell him I need surgical intervention.

                    I am getting so very depressed as I'm not living a full life with the amount of pain I have...but I'm scared that life after fusion will be even more limited. I'm between a rock and a hard place.

                    Please help -- any support, suggestions, or person stories would be greatly appreciated.
                    Thanks so much!
                    Hi...

                    Since flexibility is such an issue for you, I think it would be important to find out what levels are going to be fused. I think there are mostly 2 things that have the great effect on flexibility: a greater number of levels, and fusion to the sacrum. Unfortunately, with a large lumbar curve, it's likely you'll either need to be fused to the sacrum now, or you'll stand a fairly large chance of needing revision to the sacrum in the future. Dr. Dewald will almost certainly address these issues with you.

                    While there are relatively few of us who would actually choose to have scoliosis surgery if it were really a free choice, having the surgery is not the end of the world. There are hundreds here who have survived scoliosis surgery, and have gone on to lead productive and fulfilling lives. You probably will as well. Having surgery usually comes down to being the lesser of two evils (have the surgery to hopefully reduce your pain and increase your function, or don't have the surgery and live with the pain and loss of function). I hate the loss of flexibility, but love that I no longer have pain and can pretty much do what I want (as long as it doesn't involve things like putting a sock on my right foot or picking things up from the floor without something to hang on to).

                    If you're halfway intelligent, making the decision to have the surgery will be a process. Starting to talk about it is just the first step in a long journey.

                    Regards,
                    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


                    • #11
                      Originally posted by LindaRacine View Post
                      hate the loss of flexibility, but love that I no longer have pain and can pretty much do what I want (as long as it doesn't involve things like putting a sock on my right foot or picking things up from the floor without something to hang on to).
                      Hi Linda. Many thanks for your input. The idea of having a day without pain is enough to make me melt into tears.

                      Um...why can't you put a sock on your right foot!?

                      Comment


                      • #12
                        Hi Again,
                        My spine is fused t-2 to pelvis . I also have a three level fusion in my cervical. I will point out that I can no longer do the job that I am trained for. I am looking for a new one, I have not been sucessful in that and have been trying for more than a year. Yes your work can let you go when you can no longer do just a part of the job. Knowing what I know now---while very uncomfortable---I really needed to work a few more years. If you private message me I will answer more on this.
                        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


                        • #13
                          I recently had surgery, October 22 to be exact. I am 34 a wife and mother of four children. My curves were worse than what you have and the pain made me feel like a 90 year old woman. I opted to try Short Segment Bone on Bone fusion, but I went into surgery wanted to be rid of the pain and other issues being caused by the curves. I wore a brace from 12-15 and all it did was maintain the degrees during that time period. One of my concerns that made me try the SSBOB was the fact that I am a PA for a podiatrist and do everything from x-rays to procedures and wanted to retain my mobility and range of motion. We fused T12-L2 with removing the disks in between. Now in saying this my spine is not perfectly straight and I am not completely out of pain, but it is still early and it could take months to get there with any surgery. However, everyday is a little better and I have a positive feeling that the pressure of rotating and aligning with the pelvis is going to eventually take my pain away.

                          If you have not tried a gravity inversion table I would encourage you to do so. I thought my doctor was crazy when he told me to use one prior to surgery, but it really did help. I am using it now in my recovery as well as jacuzzi therapy on a daily basis. Wish he had encouraged me to get a jacuzzi a long time ago and it might have helped with pain prior to surgery.

                          Making the decision to have surgery alone is tough and the recovery is tough, but living everyday in pain not wanting to do anything but escape ones body makes having the surgery worth it. No matter what you decide, you will find this forum and the people on it comforting, encouraging, and some will become close friends through the process.

                          I will pray for you as you travel this road that can be scary and exciting all at the same time.

                          Tamena
                          Diagnosed at age 12 with a double major curve

                          Braced till age 15

                          SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

                          Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

                          Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

                          Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

                          Comment


                          • #14
                            Originally posted by tae_tap View Post

                            If you have not tried a gravity inversion table I would encourage you to do so.

                            Making the decision to have surgery alone is tough and the recovery is tough, but living everyday in pain not wanting to do anything but escape ones body makes having the surgery worth it. No matter what you decide, you will find this forum and the people on it comforting, encouraging, and some will become close friends through the process.

                            I will pray for you as you travel this road that can be scary and exciting all at the same time.

                            Tamena
                            Hi Tamena! Thanks. We had an inversion table but it broke recently. It did help a lot. And I recently got a membership to a gym with a jacuzzi and a therapeutic warm pool. I intended to spend the next could months living in it

                            Wow...my surgeon didn't give my the option of starting the fusion so low. I wish I could do that! I'll ask the next time I'm there.

                            I hope you're feeling well. How has your recovery been so far?

                            Best to you!

                            Comment


                            • #15
                              From your username, could you be a Robyn?

                              Anyway, welcome to the forum. I could have used your 1st post a few years ago, even though I don’t teach Yoga. Now as far as acting, I could do a pretty good Tin man if provided with the silver makeup. I’m not gay, but could pull it off....(smiley face) The scarecrow (Ray Bolger) part would be impossible....I would have to pass on that one.

                              Actually, the Tin man thing might sound kind of scary but you know, its not that bad at all. I have adapted well and I’m extremely pleased with what happened in my surgeries....I think that having a positive attitude has served me well, that and simply keeping the oil can full.....the oil is for the mind, not the arms and legs. Its to keep the mind lubricated and open for acceptance should it be needed.

                              Reading and posting here is a good start. You can PM anyone here and talk to people on the phone if you wish, going to your local scoliosis meeting would be a good thing. I don’t know if you ever braced, but it’s the same feeling. I wore a brace and skied in a brace years ago so was used to the feeling of a full fusion.

                              The decision making process is one of the hardest parts. There are many threads here on this subject, some cases easier, some harder than others. I think the parents of the kids have it the hardest, they truly freak out. If I had a child with scoliosis I wouldn’t know what to do.....40 and 50 year old adult decisions with major pain events are a little easier because it can be a downhill battle especially when degeneration runs rampant. Pain is a good motivator, it tips the scales of decision.

                              Its obvious that posters here with many posts have put thought into the subject.....those regulars have had their lives impacted by scoliosis and generally strive to learn and communicate feelings about the matter. I personally have attended meetings and have bought surgical books to learn exactly what happened, what was truly involved, and to answer many of my general questions about the difficult subject of medical science. Why does this happen? and so forth. Of course, it never ends, and in the beginning you have all these medical terms that you learn. Spondylosis,spondylolisthesis, spondylitis, man-o-man its hard to remember this stuff! I wouldn’t worry about this, its just the kind of things you will see mentioned here compounded with layman theory since we are not doctors.

                              The main thing is that you have questions....Go ahead and ask away.

                              I have a thread with mobility pictures in my signature. You will see me bending, fingertips 4 inches from the floor, and so forth. With a full fusion, it’s a process getting to your feet. After I got home from surgery, I didn’t think I would ever be able to get to my feet. I do get to my feet, but it took a while. The stretching has to happen slowly while your soft tissues heal. It took me 8 months till I was installing socks without a sock installer. Now I have no issues at all with it. It was an exercise in technique that took a long time to master.

                              Don’t forget that oil can!

                              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

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