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  • Hey,I need help

    HEY, am new in this forum and posting thread for the first time, I need help.Actually I had thoracic idiopathic scoliosis with 112 degree and 38 degree.I have had my surgery in feb 2012.it was successful.my correction was very good.I am and was really so satisfied from my correction.But as the 1 month passed i start feeling that my structure is changing again and it happened .My x-rays are same but the structure is not.My doctor said the you are fine.But actually I am not.I have severe pain in my lower back.I am unable to sit more than one hour.5 months have been passed of my surgery but am not recover fully.I am so upset and need guideline.please give me some guideline...
    Last edited by fatimah; 08-17-2012, 08:39 AM.
    I am more stronger than scoliosis. And I will not allow it to control my life.

  • #2
    So many questions Fatima. How old are you? Do you know if BMP was used in your surgery (this is a product used to encourage fusion.) Can you explain how your structure is different?

    People heal differently. Five months is still early. It's hard to say what the problem is, if any, without more detail.

    I hope this is just normal healing for you, of course, time will tell.
    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
      I am 15 years old.and I don't know whether BMP WAS done or not.I will confirm it from Doctor and then I will tell u.
      just 5 months have passed, me And even my doctor dont what has happened to me.am in great trouble
      Structure is different because when the surgeon has operated my back was straight there was no outer deformity.I was cosmetically perfect.There was just a little scapula hump.But as the months are passing my posture is becoming same as it was before surgery(so worst)
      And one more problem is that i still bear pain although 5 months have passed.I have pain in my lower back.
      I am not able to sit more than for 2 hours
      Dr Max and Dr Asad had done my surgery.
      Last edited by fatimah; 08-17-2012, 08:45 AM.
      I am more stronger than scoliosis. And I will not allow it to control my life.

      Comment


      • #4
        No advice. Just sending a hug your way and wanted to say that I'm thinking of you and hoping that you improve.

        Where did you have your surgery?

        Keep a journal of where it hurts and how much it hurts and keep telling them.

        Hugs, 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


        • #5
          No advice. Just sending a hug your way and wanted to say that I'm thinking of you and hoping that you improve.

          Where did you have your surgery?

          Keep a journal of where it hurts and how much it hurts and keep telling them.

          Hugs, 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


          • #6
            Who do you see at follow up appointments, Fatimah? Just wondering if you're getting competent after-care, by someone who can either reassure you or be aware if something does go wrong.

            Hoping for the best for you, and hoping your worries turn out to be nothing. Give it a little more time and see if you have improvement.
            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
              Yeah, my surgeon has also advised me to wait for sometime and see that any more deformity occurs or not.
              But am so scared that by waiting i could be late
              I am more stronger than scoliosis. And I will not allow it to control my life.

              Comment


              • #8
                Response to Structure Change

                Originally posted by fatimah View Post
                HEY, am new in this forum and posting thread for the first time,actually I need help.Actually I had thoracic ideopathic scoliosis with 112 degree and 38 degree.I have had my surgery in feb 2012.it was successful.my correction was very good.But as the 1 month passed i start feeling that y structure is changing again and it happened .My x-rays are same but the structure is not.My doctor said the you are fine.But actually i am not.I have severe pain in my lower back.I am unable to sit more than one hour.5 months have been passed my am not recover fully.I am so upset and need guideline.please give me some guideline...
                My curves were 72 thoracic and 46 lumbar and I just had 2-stage surgery this past May. I am about 11 weeks post-op and was told by my surgeon not to sit for extended periods of time without getting up and moving around. Sitting for 1 hour is a long time without getting up and changing positions. Are you doing any walking during the day to help exercise your muscles? Five months post-op is still early in your recovery. I was told to be extra careful the first 6 months and to be protective of myself for 9 months. To not take my surgery for granted and to allow myself time to rest each day in order to heal. You need to listen to your body. If your back starts to bother you, then you need to stop doing what you are doing and either change positions or lay down and rest. I did not listen to my body the other day and I paid the price by my back hurting me well into the evening and that was the first time I actually had pain. Be sure to balance your activity with rest and watch your body mechanics to make sure that you aren't doing something that you are not suppose to be doing.

                Lastly, someone on the forum mentioned possibly seeing another surgeon for a second opinion. That might not be a bad idea if you are questioning your surgeon's decisions. Good before and after scoli x-rays should show whether or not your structure has changed and how much. Your doctor should be able to determine that.

                I'll keep you in my prayers and hope you find an answer soon.

                Marjorie
                Marjorie

                Surgery in 2 phases, May 17 & May 22, 2012
                Prior to surgery: Thoracic 75, Lumbar 45
                After surgery: Thoracic 27, Lumbar 28
                Surgeon: Dr. Nathan Lebwohl, Miami, FL

                Comment


                • #9
                  Thanks for your reply

                  I was totally fine and was recovering so good after the surgery the time when I use too lay for the whole day.this was the period of 1 and half month.But when i started to do some walk and use to sit the change start occur.I believe that this has happened when i have start doing walk and sit..
                  Am so scared of this and that is why i don't use to sit for too long.I am disturbed much because in the week of my surgery 5 more surgeries were done and all else are fine and are properly moved toward their normal life.They use to sit for many hours and are returned to their schools and colleges and they are pain free.
                  Yesterday I was looking in mirror and I feel that my right side scapula is also become more prominent..
                  I am more stronger than scoliosis. And I will not allow it to control my life.

                  Comment


                  • #10
                    Originally posted by fatimah View Post
                    Am so scared of this and that is why i don't use to sit for too long.I am disturbed much because in the week of my surgery 5 more surgeries were done and all else are fine and are properly moved toward their normal life.They use to sit for many hours and are returned to their schools and colleges and they are pain free.
                    Yesterday I was looking in mirror and I feel that my right side scapula is also become more prominent..
                    Fatimah,

                    Did those other people have a 112/38? I am guessing not. Your curve was very large and you may have had more procedures or a longer fusion than those other people. How long is your fusion and where does it start and stop? Fusion length seems to correlate roughly with recovery time. The adults who only have thoracic fusions tend to recovery more quickly than those with fusions into the lumbar and to the pelvis.

                    Don't beat yourself up over having a different curve than the others. Everyone is different.

                    Good luck.
                    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


                    • #11
                      Yeah, You are right.Others don't have this so much curve like me.
                      My fusion was in thoracic area,some lumbar part is also included...
                      Last edited by fatimah; 08-13-2012, 03:21 AM.
                      I am more stronger than scoliosis. And I will not allow it to control my life.

                      Comment


                      • #12
                        Don't Worry

                        Originally posted by fatimah View Post
                        Yeah, You are right.Others don't have this so much curve like me.
                        My fusion was in thoracic area,some lumbar part is also included...

                        Fatima -

                        Hope all is well. I just wanted to respond to this since there are not too many of us on the forum with very severe curves in the 90-120 range. I felt thesame way too after my surgery and felt like my structure had changed which I guess it did. My doctor says that the spine settles into its own shape over the course of the year while you are fusing. He says if it is in the 5 degree range you should not be too worried as that is normal.

                        Also because of your large thoracic curve which must have come with some amount of rotation as well, it is impossible for the back to be cosmetically perfect except a thoracoplasty was also performed. I know exactly how you feel though cos right after surgery and even for my 1 month visit, my back was sooo straight but I guess as the swelling went down I realized that I did still have a residual rib hump. Not as bad as before surgery but there nonetheless.

                        I just want to allay your fears that something might be wrong or that you did something wrong to mess up your structure as this may not be the case and your spine might just be settling and the swelling going down so you are noticing more. That being said, please continue to follow your restrictions carefully and also keep a close eye on your body. You know your body best so if you feel it is changing rapidly then maybe go in for a visit so they can measure and make sure everything is in place. That will help put your mind at rest .

                        Also with regards to your pace of recovery. Please do not beat yourself up or compare yourself with others. I have done that for the past one year and felt so bad that I was not recovering as quickly as I thought for my age but I never sat back to consider the fact that i had two major curves both almost 90 degrees. You need to give your OWN body enough time to do what it needs to do ! The recovery is hard enough on its own but you have to remember that we are all so unique. You had a curve above 100 degrees so I am sure some major work was done ! You will get there. Just give it time.

                        Take care and wish u the best with your recovery. I can understand that it is a very emotional time.
                        Last edited by GOE; 08-13-2012, 01:03 PM.
                        Diagnosed as a teenager
                        Surgery 06/21/2011 Dr Boachie HSS
                        Age 34 at time of surgery
                        Pre Op : Thoracic 87; Lumbar 85
                        Post Op: Thoracic 36; Lumbar 21
                        Gained almost 2 inches in height !

                        Comment


                        • #13
                          Thanks a lot GOE.

                          I am feeling so glad and comfort by reading your thread.I think you are right that my structure is adjusting because my bone is at its same position where my surgeons have adjusted.I pray and request you too for pray that nothing go wrong with me because i am so glad and satisfied with my surgery because my surgeon had done the correction more than my expectations.
                          Just scared from my pain and the increased hump because i use to think that this has happened due to some fault..
                          But still hoping for the best that with the prayers of u all and my relatives i will get rid of this too.
                          I am more stronger than scoliosis. And I will not allow it to control my life.

                          Comment


                          • #14
                            Fatima--

                            All that you describe I can relate to. I think it is true that the rib hump appears larger after the swelling goes down. I still am concerned about that but knowing what a huge curve and rotation I had, I guess that's just the way it is. Still better than if I hadn't had it done! I was also told that the spine was settling where I lost some correction at the highest levels. Prayers and positive thoughts for you as you go through your recovery. Best wishes. Janet
                            Janet

                            61 years old--57 for surgery

                            Diagnosed in 1965 at age of 13--no brace
                            Thoracic Curve: 96 degrees to 35 degrees
                            Lumbar Curve: 63 degrees to 5 degrees
                            Surgery with Dr. Lenke in St. Louis--March 30, 2009
                            T-2 to Pelvis, and hopefully all posterior procedure.

                            All was posterior along with 2 cages and 6 osteotomies.

                            Comment


                            • #15
                              Originally posted by Doodles View Post
                              Fatima--

                              All that you describe I can relate to. I think it is true that the rib hump appears larger after the swelling goes down. I still am concerned about that but knowing what a huge curve and rotation I had, I guess that's just the way it is. Still better than if I hadn't had it done! I was also told that the spine was settling where I lost some correction at the highest levels. Prayers and positive thoughts for you as you go through your recovery. Best wishes. Janet
                              Am agree with your opinion too.I also wants to know about yours experience of pain that up to how long you had bear pain??
                              because 6 months post-op still have pain in lower back.
                              I am more stronger than scoliosis. And I will not allow it to control my life.

                              Comment

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