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WARNING: if considering full spinal fusion, it may disable and end your life as mine.

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  • #46
    I had to search and go to several different pain management doctors before I found the ones that I am currently working with. I am certainly not saying that I am pain free but I am working towards a liveable goal. In addition, I am seeing a pain psychiatrist,

    I , also, knew that one does not have scoliosis surgery to get rid of pain. One has it to stop the progression of your curves even further.
    Melissa

    Fused from C2 - sacrum 7/2011

    April 21, 2020- another broken rod surgery

    Comment


    • #47
      pain

      I have been in pain literally EVERY SINGLE DAY since my original Scoliosis surgery thirty years ago. You just can't fuse the whole human spine, which is meant to bend, without dire consequences. My muscles want to bend and stretch and of course they can't. Now I am experiencing terrible thoracic pain - it feels like an ax has been lodged into my spine - a deep ache between the shoulder blades that comes and goes. When it comes it is so severe that I literally cry in public. The pain extends across my scapular and into my shoulders and neck. It is now as bad as my lumbar pain from my crumbling facet joints (which are crumbling BECAUSE of my original surgery.) I've asked three deformity surgeons about it and NONE of them will even comment. I have friends on this forum that have the same thoracic pain and also do not get answers from their surgeons.
      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


      • #48
        You may try an upper extremity specialist. I did not find the answer to the shoulder blade issue until that doctor looked at the fusion and the shoulder. Since you are also having shoulder pain that specialist may be able to find the reason. Mine did and the solution is different . The scapula is getting caught on part of the ribs that are in the way from scoliosis deformity. My correction surgery is next Monday. I will let you know if it helps.
        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


        • #49
          Originally posted by mabeckoff View Post
          ,

          I , also, knew that one does not have scoliosis surgery to get rid of pain. One has it to stop the progression of your curves even further.
          You are probably talking about people that have curves that start early in life that are not associated with degenerative spinal problems.

          For those of us with degenerative scoliosis [adult onset degenerative scoliosis], the surgery is for pain as the curves are generally relatively small [mine= 20*T & 36*L] and the only reason that we have a curve is because the degenerating discs collapse asymmetrically. The surgery is to repair the discs and then straighten the curve prior to spinal fusion.

          Congratulations, Melissa on your efforts to get ahold of your pain and seeking the assistance of a Pain Psychiatrist. I have been away from the forum for a while, so have not kept up with your progress. You obviously have not given up, and I hope that you continually find help to decrease your discomfort. I look forward to reading about the help that the stimulator brings.

          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


          • #50
            Susan,


            Thanks for your kind words of encouragement. I am willing to keep on trying as I do not want to live with this amount of pain forever.

            I really do not know when my curve started . I do know that I never was told in school that I had a problem.

            I do remember in my 30's that my PCP told me that I had a curve but she never told me to do anything about it.

            In my late 40s is when I really started having problems.
            Melissa

            Fused from C2 - sacrum 7/2011

            April 21, 2020- another broken rod surgery

            Comment


            • #51
              Susan, mine was congenital also...

              Susan,

              I was about the same age as you, in school,around 13 or 14 when mine was diagnosed. At that time it was probably around 25-30 degrees, with a smaller additional, S curve. At that time I was told not significant enough to do surgery and was prescribed some exercises to do. Didn't help since I had stopped growing. Oh, was also prescribed a built up shoe...tell a freshman girl entering high school she will have to wear that and look like a freak. I cried and told my parents I would not wear it. 30 years later pain and progression to 80 and 60 degree curves, I felt I didn't have much choice, but finding this forum encouraged me to go ahead with surgery and never even occurred to me I would sentenced to the rest of my life with disabling chronic severe pain. Pain is in my hip and radiates down back of left leg, severe radiculopathy- sciatic pain for those of you who have asked. And yes I've every test known to man, CT fluoroscopy, MRI with contrast, etc. only to be told everything looks fine.

              Take care Susan and I hope you find a resolution.
              Pam
              Pam, age 49
              Thoracolumbar curves 80 and 40 corrected to 20 degrees
              April 20, 2012 surgery with Dr. Lenke
              T-3 to sacrum

              Comment


              • #52
                appreciation and prayers

                Hi Pam, I certainly appreciate hearing from you. it is so frightening to hear about your post-op condition, you did have a very long fusion too. I know of another member who must use narcotic patches to minimize the pain= not "control it' because when you live day in and day out with pain, you can only hope to numb it/ lessen it. ( she is at least 4yrs post op now). Just curious: does distraction help at all? (it helps me temporarily). I may face your future- with or without surgery; my discs are wearing out with age and use. this IS a reality we face, and I am grateful you have posted. and I pray you may find some relief, even temporary, so that you can keep your sanity. I cannot imagine how difficult life has become for you. but you belong here, with the forum- you are one of us, and we are here to support each other. sympathy and prayers xxxx Jamie in TX
                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


                • #53
                  I too am in constent pain.

                  I also applaud the people posting the truth. Most spine surgeries do fail and we are doomed to live in pain forever. I guess it was what God destined for us. What really bothers me is those non-scoliosis people out in the world that think we exaguerate our pain and limitations. I actually have to show a copy opf my hardware for people to believe me. Everyone thinks they have back pain but just do jot understand us.

                  Only we can understand.

                  Comment


                  • #54
                    Very Well Said

                    Very well said Dixiemom.

                    I know we are supposed to accept what God gives us in life and I do. But I am not going to down play it anymore. Sometimes it helps us to let our frustration out in words to our Scoliosis friends that actually DO UNDERSTAND.

                    Thank you to the person that started our 'Frustration with Pain' Thread.

                    Comment


                    • #55
                      Daily pain have you checked out Melissa posts. She is having a different kind of help with pain. Don't stop looking for the help you need. It is out there somewhere.
                      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


                      • #56
                        Reply

                        Originally posted by jackieg412 View Post
                        Daily pain have you checked out Melissa posts. She is having a different kind of help with pain. Don't stop looking for the help you need. It is out there somewhere.


                        Not sure which one is Melissa. But thanks for the info. My problem is more than pain. I have walking & sitting limitations also. Which I'm sure are familiar with other scoliosis friends fused to sacrum.

                        Plus, I am having a lot of 'pulmonary issues'. I get short of breath too often. My pulmonary dr says its my heart but my cardiologist says its my lungs.

                        Scoliosis takes a toll on many other parts of our body besides our bones.

                        I eat very healthly now ( since 2012 ) hopefully to keep my 'innereds' from causing me serious problems.

                        Comment


                        • #57
                          Originally posted by dailypain View Post
                          Not sure which one is Melissa. But thanks for the info. My problem is more than pain. I have walking & sitting limitations also. Which I'm sure are familiar with other scoliosis friends fused to sacrum.

                          Plus, I am having a lot of 'pulmonary issues'. I get short of breath too often. My pulmonary dr says its my heart but my cardiologist says its my lungs.

                          Scoliosis takes a toll on many other parts of our body besides our bones.

                          I eat very healthly now ( since 2012 ) hopefully to keep my 'innereds' from causing me serious problems.

                          I am Melissa mabeckoff

                          I am fused C2- sacrum

                          Please read my threads and ask questions

                          Melissa
                          Melissa

                          Fused from C2 - sacrum 7/2011

                          April 21, 2020- another broken rod surgery

                          Comment


                          • #58
                            Sorry to hear about your stories, but please share!

                            Originally posted by TwinmomTN View Post
                            Not all surgeries turn out rosey like most here post.
                            As I recover from one of those "rosey" surgeries my heart aches with compassion and the tears flow freely. At 4 months post-op, I feel thankful and fortunate that finally the worse is over and now back to work (with limitations) and little by little getting my old life although with a "new normal" and minimal pain meds. I used the good and not so good experiences shared from this forum and hoped for a good outcome. Thanks to those who shared I went in with eyes wide open.
                            Scoliosis in its many forms and shapes is painful and heavily debilitating. Only the person who has it understands and the repeating of the same thing gets old to the people around us when we complaint about back pain. It's not a simple back pain... is a life of misery and questioning why me and searching for what to do to make it better.

                            I, like others have already said, am interested in listening to the other not so rosey stories and hear what others are going through. This is a support forum and I believe all stories and experiences are welcomed. I fervently pray that you all find a relief to your pains, complications and to whatever is ailing you.
                            Loretta
                            39 years old, 2 children, suffering from scoliosis since the age of 12.
                            Lumbar curve 55 degrees, 4 herniated disks and 2 small fractures - after surgery only 20 degree curve - Fusion T10-L4
                            Surgery on 4/21/15 with Dr. Gjolaj @ (UM) Jackson Memorial Hospital, Miami, FL

                            Comment


                            • #59
                              Bad time to check in (killer thread and about to have a mastectomy)...

                              No time to write much as breast cancer (routine screening turned it up) has preempted everything for the time being. (I won't know the stage until surgery which is to be finally scheduled on Tuesday).

                              However, this:
                              Dailypain wrote, "I also applaud the people posting the truth. Most spine surgeries do fail and we are doomed to live in pain ".

                              How many of you think this is true? Linda Racine?
                              From my last (March) consult, Thomas Errico wrote in his dictated notes, my chances of complications were 100% and of serious complications, 20%.

                              Wondering what the odds truly are of such horrendous outcomes (so very, very sorry TwinmomTN, susancook, dailypain, Tableone, Melissa and all too many others!)

                              Rethinking my eventual spinal surgery (that is, if I still qualify). Don't know what my predictable future is without surgery as I've had all herniated disks for at least ten years, and can scarcely walk now without a walker (at most 100 yards). Not counting constant pain (except reclining in THE perfect position). This means I depend on ADVIL (maximum dose) and Norco (which I try to keep at a minimum having experienced a hellish withdrawal once on my own).

                              But then again, "things can always get worse", I guess. I would hate to be in still more spinal pain so I couldn't even concentrate on writing or art (former professions to which I hope to return).

                              Hoping to hear from someone knowledgeable in the stats just how often patients DO suffer intractable pain post-surgery, in particular at such a severe level.
                              Last edited by Back-out; 09-01-2015, 11:23 PM.
                              Not all diagnosed (still having tests and consults) but so far:
                              Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
                              main curve L Cobb 60, compensating T curve ~ 30
                              Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

                              Comment


                              • #60
                                Ps

                                So sorry, friends, to have disappeared abruptly after my long overdue return. Right after posting, I experienced weeks of massive computer and Comcast problems which kept me offline, and I lost momentum as other health and family problems intervened. Leading in due course to - this. Got biopsy results days before knee joint replacement! Cosmic joke, sort of.

                                (Hopefully, it was caught early)

                                Doubt I'll be able to write again for foreseeable as I continue to juggle all the logistics of testing and surgical recovery (alone), followed by any treatment that's ordered - if it is. As with spinal surgery, quality cancer facilities are distant from my home town so much time is spent trying to minimize costs of travel and lodging out of town (Yes, I know about all the supports the American Society sponsors but demand far exceeds supply!)

                                My thoughts are with you all.
                                Not all diagnosed (still having tests and consults) but so far:
                                Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
                                main curve L Cobb 60, compensating T curve ~ 30
                                Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

                                Comment

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