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I need some confidence....anyone have any to give me? Making the BIG decision!

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  • #31
    Hi Susan,

    I think trust is definitely the key. You have to decide which surgeon you trust and can work with to get through this. Once you decide to trust, you need to let the surgeon do the worrying for you, since that is what they have gone to years and years of schooling for. I know it is hard for us medical types to shut it down and let someone else be in control of decisions for our body, but I think it is the only way to make peace with your need for surgery.

    Please do yourself a favor and stop obsessing about the bad outcomes. Stop searching for posts about bad outcomes, and please stop reading the posts about people who regret being fused. You are really torturing yourself. It will not change the fact that you need surgery. Just say no!

    I offer this advice in the most gentle, supportive way imaginable. I see you struggling with this decision, and I want to help you get to the point of peace with your decision. It occurred to me that you are still so conflicted because you have not met the right surgeon for you yet. Maybe you will click better with Dr Hu. Not every surgeon is going to be the right fit for every patient. I truly know how busy it is at OHSU, and if you don't trust, it could be easy to leave there thinking it is not the right fit for you. Only you can decide.

    Please also be prepared that you could end up disappointed in your second opinion if it is not everything you are hoping for. I got two other opinions (one in Eugene, one in Portland) and found both of them to be disappointing, and the Portland one especially, as I have mentioned, to be confusing. I wrote a thread about it at the time if you are interested.

    Best wishes, and please try to stop tormenting yourself by reading so many medical articles. I know, because I did it too, and it really did me no good at all. This time you are going to have to be the patient, something we nurses hate to do!

    Take good care, know we are here for you.
    Last edited by leahdragonfly; 12-24-2012, 10:35 AM. Reason: info added
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

    Comment


    • #32
      Originally posted by leahdragonfly View Post
      Hi Susan,

      I think trust is definitely the key. You have to decide which surgeon you trust and can work with to get through this. Once you decide to trust, you need to let the surgeon do the worrying for you, since that is what they have gone to years and years of schooling for. I know it is hard for us medical types to shut it down and let someone else be in control of decisions for our body, but I think it is the only way to make peace with your need for surgery.

      Please do yourself a favor and stop obsessing about the bad outcomes. Stop searching for posts about bad outcomes, and please stop reading the posts about people who regret being fused. You are really torturing yourself. It will not change the fact that you need surgery. Just say no!

      I offer this advice in the most gentle, supportive way imaginable. I see you struggling with this decision, and I want to help you get to the point of peace with your decision. It occurred to me that you are still so conflicted because you have not met the right surgeon for you yet. Maybe you will click better with Dr Hu. Not every surgeon is going to be the right fit for every patient. I truly know how busy it is at OHSU, and if you don't trust, it could be easy to leave there thinking it is not the right fit for you. Only you can decide.

      Please also be prepared that you could end up disappointed in your second opinion if it is not everything you are hoping for. I got two other opinions (one in Eugene, one in Portland) and found both of them to be disappointing, and the Portland one especially, as I have mentioned, to be confusing. I wrote a thread about it at the time if you are interested.

      Best wishes, and please try to stop tormenting yourself by reading so many medical articles. I know, because I did it too, and it really did me no good at all. This time you are going to have to be the patient, something we nurses hate to do!

      Take good care, know we are here for you.
      Thanks Gayle, I will stop reading bad outcome threads and doing research. Research is what I have done for a living. I just keep reading until I find the answer or have completely understood the topic. I have so much emotionally invested in this second opinion. I am confused and frustrated. I wish in some ways that someone could just make the decision for me....but that is not going to happen, obviously it needs to be my decision. I guess that Dr. H sort of made the decision for me when he said something like, "I don't know why anyone in your situation wouldn't want to have surgery". Sometimes I just want to put my head in a hole and pretend that all of this doesn't really exist....sort of like running away. I can't believe that I am paralized in making this decision as I am so assertive and confident in so many other areas. I keep thinking that maybe it really isn't too bad and I can just hang on like I am and make it work. Especially since my curve didn't get worse....but like someone said before, it's not so much about the curve as it is about the degeneration of the vertebrae that support the curve. I actually feel better now as the steroids are still working. In some ways, it is a bad time to make a decision as I can get out now and do things that I could not do last week before the injection. But that is my last L4 inj for another 8 months and I remember what I felt like and the disability that I had before the injection.

      Thanks to eveyone who is supportive and trying to help 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


      • #33
        Leading parallel lives?

        Susan, my "big" appointment with my surgeon is on January 10th, just 3 days after yours! We will have to compare notes. I'm sending you good vibes. And, you probably already do this, but one of the best pieces of advice I got before seeing my surgeon is to write down every single question you have. When they're in a rush, and you're anxious and nervous, it's easy to forget questions. My surgeon always looks a little nervous when I take out the yellow legal pad but I always get the answers I'm seeking.

        Happy holidays to you. I hope you can have a peaceful New Years and be gentle to yourself. That's my intention this holiday season...to allow my head to stop spinning and to breathe and enjoy every moment I can.

        xoRobyn

        Comment


        • #34
          Thanks Robyn, I hope that you have a great Christmas and the best for the new year! I am going to try to take a few days off from worrying...ha! ha! ha! or should I say, ho! ho! ho!
          Take care, we will compare notes. I will send you a Private Message. 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


          • #35
            Fusion of a 23* curve because of damage, not curvature

            55 yo w painful collapsing degenerative scoliosis and stenosis fixed this am

            http://drlloydhey.blogspot.com/2011/...enerative.html

            23 degree Preop curve w Spondylolisthesis and stenosis.
            L1-iliac instrumentation and fusion w multilevel laminectomies.

            Surgery time: 3 hrs 10 min.
            Ebl: 800 cc.
            Complications: none.
            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


            • #36
              Originally posted by Pooka1 View Post
              55 yo w painful collapsing degenerative scoliosis and stenosis fixed this am

              http://drlloydhey.blogspot.com/2011/...enerative.html

              23 degree Preop curve w Spondylolisthesis and stenosis.
              L1-iliac instrumentation and fusion w multilevel laminectomies.

              Surgery time: 3 hrs 10 min.
              Ebl: 800 cc.
              Complications: none.
              I wish that he had written more information. My main problem seems to be degenerating discs and arthritis....like all of them and "severe"....whateveer that means. And the this new change in coronal balance which I don't understand. I have stenosis of L4 and 5....and lots of other vertebrae, I think.
              Thanks for the info.

              Could any older women [like 60s and above] who have late onset degenereration scoliosis who never had earlier back surgery send me a note to tell me hiw they are doing? How was the surgery and recovery? Maybe I will start a new thread if I do not get responses. I have difficulty trying to understand how the younger people's surgeries and recovery fit with mine. With so many degnerating discs and arthritis, I imagine that the surgery and recovery are different....think that I wil start a thread...so please respond there if you area member of our unique group!

              Susan
              Last edited by susancook; 12-26-2012, 03:20 AM.
              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


              • #37
                Originally posted by susancook View Post
                I wish that he had written more information. My main problem seems to be degenerating discs....like all of them and "severe"....whateveer that menas. I have stenosis of L4 and 5.
                Thanks for the info.

                Could any older women [like 60s and above] who have late onset degenereration scoliosis who never had earlier back surgery send me a note to tell me hiw they are doing? How was the surgery and recovery? Maybe I will start a new thread if I do not get responses. I have difficulty trying to understand how the younger people's surgeries and recovery fit with mine. With so many degnerating discs, I imagine that the surgery and recovery are different....think that I wil start a thread...sp please respond there if you area member of our unique group!

                Susan
                Susan,
                I think you misunderstand when you think that Adult Onset Degenerative Scoliosis patients are part of a unique group...those of us that have have scoliosis for most of our lives also have degenerating discs and all kinds of funky things going on in the our vertebrae and vertebral spaces that cause pain. I did not have surgery until I was 48, and had DDD with stenosis causing sciatica much like yours. I have also had problems with a 14 cm forward sagittal imbalance.

                My point is that your recovery should you choose to have surgery, would be very similar to any other person with IS. Don't discount the stories of someone here just because they might not be exactly your situation.

                You will know when you are ready. The choice will be clear when you find your surgeon. You haven't found him ( or her ) yet. May you have peace in your search.
                May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

                March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

                January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

                Comment


                • #38
                  Originally posted by naptown78 View Post
                  My point is that your recovery should you choose to have surgery, would be very similar to any other person with IS. Don't discount the stories of someone here just because they might not be exactly your situation.
                  Two points here...

                  1. Based on her MRI report, they claim all that damage is SECONDARY to a 36* curve. I am not clear how they determine that rather than the smallish curve collapsing due to severe DDD but there you are. So I was wrong in suggesting Susan was somewhat different because I assumed she did NOT have idiopathic scoliosis but rather adult degenerative. And by the way, I think surgeons should be warning these folks with smallish curves to continue to monitor for damage and not just for progression. Bracing claims to halt progression but if there is still a world of damage possible with a smallish curve then brace wear can and should be further questioned.

                  2. The level of satisfaction with surgery tends to scale with pre-op pain levels per Linda. Since Susan has very high pain, she is more likely to be satisfied with any lesser post op pain. So her recovery might not be similar to someone who had little pain pre op.
                  Last edited by Pooka1; 12-25-2012, 08:25 PM.
                  Sharon, mother of identical twin girls with scoliosis

                  No island of sanity.

                  Question: What do you call alternative medicine that works?
                  Answer: Medicine


                  "We are all African."

                  Comment


                  • #39
                    Handy Seat Cane

                    In the meanwhile, you might want to buy yourself a "cane seat."

                    http://www.walmart.com/ip/21108211?a...l5=pla&veh=sem

                    I found it indispensable and used it for many years, especially at airports, touring, and shopping when a cart was not available. I found that leaning over, or sitting, took the pressure off the nerves and helped with the pain going down the leg or periformis.

                    Good luck!
                    Irene
                    1996 x-rays (none read recently) 50 degrees thoracic, 40 degrees lumbar
                    Never braced, found out I had scoliosis at age 28
                    At time of surgery, multi-level disc spondylotic degeneration,
                    advanced lumbar degeneration, stenosis
                    65 years young and very active but no lengthy walks or standing without pain
                    Now, 67. walking and standing as much as I want
                    Surgery Dec. 7, 2010
                    T10-S1 posterior
                    Dr. Rand
                    New England Baptist Hospital, Boston,
                    http://s1224.photobucket.com/albums/ee369/itr1/

                    Comment


                    • #40
                      Originally posted by Pooka1 View Post
                      Two points here...

                      1. Based on her MRI report, they claim all that damage is SECONDARY to a 36* curve. I am not clear how they determine that rather than the smallish curve collapsing due to severe DDD but there you are. So I was wrong in suggesting Susan was somewhat different because I assumed she did NOT have idiopathic scoliosis but rather adult degenerative. And by the way, I think surgeons should be warning these folks with smallish curves to continue to monitor for damage and not just for progression. Bracing claims to halt progression but if there is still a world of damage possible with a smallish curve then brace wear can and should be further questioned.

                      2. The level of satisfaction with surgery tends to scale with pre-op pain levels per Linda. Since Susan has very high pain, she is more likely to be satisfied with any lesser post op pain. So her recovery might not be similar to someone who had little pain pre op.
                      Sharon: This didn't make sense to me either. I thought that the scoliosis in degenerative adult onset scoliosis was secondary or caused by the integrity failiure of the vertebrae. I will ask my spine MD about that: The chicken or the egg thing. I had my back checked many times just as a part of a general physical while I was in the Navy for 30 years. While I do not think that I had any back xrays done during that time, I really don't think that I had anything major going on scoliosis wise.

                      I agree with Linda's and your statement. It makes sense that if you have lots of pain preop, that you are not blown away or disappointed with the postop pain. Then, you are finally pleased when the pain subsides [says she who was a heating pad accross the back of her back since I have severe lower back apin and connot go to sleep until it lets up!]
                      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


                      • #41
                        Originally posted by backissues View Post
                        In the meanwhile, you might want to buy yourself a "cane seat."

                        http://www.walmart.com/ip/21108211?a...l5=pla&veh=sem

                        I found it indispensable and used it for many years, especially at airports, touring, and shopping when a cart was not available. I found that leaning over, or sitting, took the pressure off the nerves and helped with the pain going down the leg or periformis.

                        Good luck!
                        Irene
                        Thanks, Irene. I will check into it! Susan Beats lying on the ground.....
                        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


                        • #42
                          Susan, your mailbox is full.
                          Sally
                          Diagnosed with severe lumbar scoliosis at age 65.
                          Posterior Fusion L2-S1 on 12/4/2007. age 67
                          Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
                          Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
                          New England Baptist Hospital, Boston, MA
                          Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

                          "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

                          Comment


                          • #43
                            Originally posted by naptown78 View Post
                            Susan,
                            I think you misunderstand when you think that Adult Onset Degenerative Scoliosis patients are part of a unique group...those of us that have have scoliosis for most of our lives also have degenerating discs and all kinds of funky things going on in the our vertebrae and vertebral spaces that cause pain. I did not have surgery until I was 48, and had DDD with stenosis causing sciatica much like yours. I have also had problems with a 14 cm forward sagittal imbalance.

                            My point is that your recovery should you choose to have surgery, would be very similar to any other person with IS. Don't discount the stories of someone here just because they might not be exactly your situation.

                            You will know when you are ready. The choice will be clear when you find your surgeon. You haven't found him ( or her ) yet. May you have peace in your search.
                            Thanks for responding. The main difference that I see between many of the IS and us w/ adult onset degenerative scoliosis is the magnitude of the curve and the amount of time that we have been affected. You are very right, aging takes a toll on everyone w/ degeneration and stenosis and ah....how could I forget arthritis.

                            Right now I am in a bit of a frenzy as I am going to meet my second opinion [Dr. Hu] in 10 days and I am very nervous! What is she going to say? Will she say that I need to have more procedures or physical therapy [now x 1.5 years] and wait for surgery until things get worse? Will she say that I am OK as I am and just go home? Will she think that a surgical correction will help me? If she does say that....do I want surgery? Is she going to say to wait for surgery? I feel like I am auditioning! I have even started to plan my outfit!

                            I surely do need peace. Thanks for your advice. 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


                            • #44
                              Originally posted by loves to skate View Post
                              Susan, your mailbox is full.
                              Sally
                              Sorry...I dumped some...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


                              • #45
                                What if you don't know when it is "time" to have surgery?

                                Obviously, I am struggling. I seem to ask the same question over and over again and expect different results. I read and retread posts, and I hear the message, "you'll know when it is time to have surgery". Yesterday, I think that I went beyond that point. We had a busy day, and I went shopping and to a reception. I was beyond over the top. I was in severe pain when we got home. I took all my pain meds plus and nothing helped. This morning, I feel pretty good and yesterday is just a blur. Maybe, I don't know when to get go and say, "enough". I am afraid that when I do have surgery (did I just say WHEN and not if?) that I will wonder what I waited so long.

                                I know that each person is different, but I wish that there was some meter that said, "You have exceeded reasonable pain, surgery will be scheduled". Having just written that, I think that I want someone to make the decision for me and I know that only I can make that decision for myself. But I keep going in circles and coming back to the same place. There is a missing piece to my dilemma, and I cannot figure out what it is. Why can't I figure out that I need to have surgery? Meanwhile, I find myself in excruciating pain, in the evening....
                                Susan, usually not an indecisive person.....why now?
                                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

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