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  • So thankful this site exists!

    I am a 28 year old and I've had scoliosis since I was 13. I was braced...I had about a 15 or so degree curve and it has progressed to a 45 degree curve I think in my lumber...I don't know as much about it as some of you guys!

    Anyways, I'm contemplating surgery. I met w/ Dr. Kirk Wood (Mass General) and he said he would operate on me.

    My family/friends don't want me to do it. I'm uncomfortable in my own skin. I ache all the time and I also feel so deformed...I hate wearing a bathing suit on the beach and try not to wear anything tight on top.

    I know surgery is a personal decision and it's helpful to read about some of your journeys....any feedback is much appreciated.

    I recently was got access to post so sorry this is so long...I'm excited!

    Thanks, Christina
    Christina
    Age 31

    Wore a brace as a teen but my double thoracic curves progressed.
    Had surgery on 6/29/11 with Dr. Rand at NEBH
    Curves improved from 45 and 50 degrees to mid 20s.

  • #2
    Originally posted by chmesh View Post
    I am a 28 year old and I've had scoliosis since I was 13. I was braced...I had about a 15 or so degree curve and it has progressed to a 45 degree curve I think in my lumber...I don't know as much about it as some of you guys!

    Anyways, I'm contemplating surgery. I met w/ Dr. Kirk Wood (Mass General) and he said he would operate on me.

    My family/friends don't want me to do it. I'm uncomfortable in my own skin. I ache all the time and I also feel so deformed...I hate wearing a bathing suit on the beach and try not to wear anything tight on top.

    I know surgery is a personal decision and it's helpful to read about some of your journeys....any feedback is much appreciated.

    I recently was got access to post so sorry this is so long...I'm excited!

    Thanks, Christina
    I want to wish you all the luck in the world. I am getting ready for my first and hopefully only spinal surgery. This is a wonderful forum. Everyone is very helpful.
    Good Luck,
    Reggie

    Comment


    • #3
      It's so challenging when your family doesn't understand why surgery needs to be considered! If you have a 45 degree curve and pain, you really SHOULD consider it!

      I was taking massive amounts of pain killers before my surgery. Four weeks after surgery, I was completely OFF pain meds. I know that's different for everyone, but the majority of us can tell you that we are VERY glad we took the plunge.

      At your age, you could get a really great correction BEFORE your scoliosis takes over your life. I just wish I'd done it earlier!

      (If you want to see my recovery, it's on my blog.)

      WELCOME TO THE FORUM!
      Ginger Woolley

      Oct 2018, L3 - S1, Anterior & Posterior, Dr Sigurd Berven, UCSF, San Francisco
      ******
      May 2008, T4 - L3, Dr. Ohenaba Boachie, Hospital for Special Surgery, NYC
      ******
      Sept 1967, T4 - T 11, without instrumentation, Dr Thomas Brown, Stanford

      Comment


      • #4
        I am in the same boat as you and thinking I am going to get the surgery. Be damned If i am gonna live with this for another 50 years (if I live that long). Just hope my surgeon can empathise with my sitaution.
        45L/40T
        Surgery 25/1/2010
        Australia

        Knowthyself

        Scoliosis Corrected 25/1/2010 by Dr Angus Gray, Prince of Wales Private Hospital, Sydney. Fused T3-L4.

        Comment


        • #5
          I had the surgery as a teenager. When my daughter developed scoliosis as a teenager, she had the surgery. My mother asked me shortly befroe she died if I regretted or resented having the surgery. I told her that I was glad I had it. I was told at the rate my curve was progressing, I would have been dead by age 30 without the surgery.
          T12- L5 fusion 1975 - Rochester, NY
          2002 removal of bottom of rod and extra fusion
          3/1/11 C5-C6 disc replacement
          Daughter - T7 - L3 fusion 2004

          Comment


          • #6
            Originally posted by rainbow2010 View Post
            I had the surgery as a teenager. When my daughter developed scoliosis as a teenager, she had the surgery. My mother asked me shortly befroe she died if I regretted or resented having the surgery. I told her that I was glad I had it. I was told at the rate my curve was progressing, I would have been dead by age 30 without the surgery.
            I was in the same situation as you, although I would have been dead in my early 20's, they couldn't even wait till I was out of puberty, they feared the massive growth spurt would make things that much worse, and I was already bad enough.

            Although I am having troubles now, I do not regret the surgery, plus the techniques and pushing for PT afterwards make things a lot better. If I were to do my life over, I'd still go through with it. When I first came to this site I was simply amazed at the xrays and how well people were doing. I still get shocked at how much things have changed. hehe
            Surgeries July 26th & August 3rd 1983 (12 years old)
            Still have 57 degree curve
            2 Harrington rods
            Luque method used
            Dr David Bradford
            Twin Cities Scoliosis Center
            Preop xray (with brace on)
            Postop xray

            Comment


            • #7
              I'll be 28 near the end of this month and just recently had the surgery this past May. I was in the same boat as you, diagnosed at 13 and wore a brace till I wa almost 15. I was a 'bracing success' since my curve went under 20* and then after having children it progressed back up to 42 by July of 2007 and then by March of this year it was at 51 degrees, yes thats 9 degrees in under 9 months! You are welcome to check out my blog and read through it, if you have any other questions just ask away I don't mind!
              My One Crooked Momma blog
              Fused T1-L1 May 21st 2008
              From 51* to STRAIGHT! Thanks Dr. Shelokov @ Baylor

              Comment


              • #8
                thanks guys for all of your feedback.
                i think i might wait until the end of this year and go back to the surgeon and have an xray.

                i'm a teacher so i have my summers off. do you think that (if the surgeon is around during the summer) it would be a good time to have it? it's hard to tell how much time i'll need to recover, but i hate to take so much time off work...what did you guys do about that?
                Christina
                Age 31

                Wore a brace as a teen but my double thoracic curves progressed.
                Had surgery on 6/29/11 with Dr. Rand at NEBH
                Curves improved from 45 and 50 degrees to mid 20s.

                Comment


                • #9
                  2nd opinions are VITAL

                  Welcome Christina. There is a wealth of information and experience here that is unmatched so I hope you take the time to investigate all your options, surgery included.

                  In my never to be humble opinion about the topic of 2nd opinions, and as an experienced scoli surgery conqueror, I'm going to take the opportunity to get on my soapbox about shopping for surgeons.

                  It is extremely important to talk to more than one doctor. I had FIVE "2nd opinions". It blew my mind the variety of surgery proposals I had with those five doctors. One wanted to do three levels. The next wouldn't touch me with a 10 foot pole. The third wanted to rush me straight to surgery in two weeks. The fourth proposed a fusion from T10 to L5, and included an anterior procedure. The fifth wanted to fuse me to the sacrum and wanted to do the anterior as well, but blew off the anterior portion as if it was similar to getting a tooth filled.

                  I chose the fourth doctor, for a variety of reasons because there are SO MANY things to consider before this life-changing surgery. I picked him because he had a thorough understanding of ALL my problems and he didn't sugar-coat anything, but did address everything...every detail.

                  If I hadn't had ALL those opinions, I wouldn't know, or understand, all of the issues involved...the bad discs, the anterior v. posterior approach's and the reasons for them, the hospitals and the hospitals REPUTATION, and convenience for me for follow up, etc. There are so many things to consider.

                  I can't encourage you enough to get as many opinions as your insurance or budget will allow. That in and of itself will make YOU an expert on something that you will have to live with the rest of your life! Nobody can take care of you better than...you!

                  Good luck and God bless.
                  Susan
                  XLIF/Posterior Surgery 6/16/08. Fused T10-L5 in CA by Dr. Michael Kropf (don't go there unless it's simple, I hear he's at Cedar's now). Very deformed, had revision w/5 PSO's, rods from T-3 to sacrum including iliac screws, all posterior, 5/23/16 with Dr. Purnendu Gupta of Chicago.


                  Owner of Chachi the Chihuahua, So Cal born and bred, now a resident of 'Chicagoland' Illinois. Uh, dislike it here....thank God there was ONE excellent spine surgeon in this area.

                  Comment


                  • #10
                    I agree with Susan, I would certainly get a second opinion. You still have a pretty nice size curve so in the end, surgey could be your best option, especially if it is progressing. I am about the same age as you, I will be 28 in November. I was diagnosed when I was 12 however, I was not braced. I was told by my first doctor that I was finished growing and I would never progress. My largest curve at that time was 32 degrees and at the time of my surgery in March, it had progressed to 63 degrees, so surgery was a good option for me to stop the progression and get as good of a correction as I could. I was also able to recover very quickly, maybe due to my young age. I still have aches and pains, I am going through physical therapy to strengthen my back, but I was back at work after only 6 weeks. It is a very hard surgery to go through. I thought I knew how hard it would be but I had no idea. I am still glad I went through it now rather than later. Let us know what you decide. You should make your decision for you and no one else.
                    Jamie Age 29
                    Mother to a 6 year old daughter & an 11 month old baby boy.

                    2000 Curves - 28/40/32
                    2008 Curves - 39/63/44
                    Surgery Date - 3/25/08
                    T4 - L1

                    63 degrees corrected to 15 degrees !

                    Comment


                    • #11
                      Jamie, I am totally amazed by the fact that you will be having a BABY within a year of surgery. Of course, you young 'uns bounce back FAST!

                      Christina, during the last year before I had my surgery, my curve was progressing one degree a month. If you start getting into constant pain or your curve gets worse, you may want to start lining up consultations since surgeons are often scheduled several months out.

                      My three consultations (Dr. Lenke, Dr. Shelakov, Dr. Boachie) resulted in almost the exact same approach to surgery. Whether you have Chihuahua Mama's experience or mine, you will make a more knowledgeable choice with information. AND, if you choose to move ahead with surgery, you will be better armed to deal with your family's resistance.

                      Today, I blogged about how my brother HARASSED me until I got into see some scoliosis specialists. Three doctors telling me the same thing helped ME to get out of denial and face the fact I needed surgery.
                      Ginger Woolley

                      Oct 2018, L3 - S1, Anterior & Posterior, Dr Sigurd Berven, UCSF, San Francisco
                      ******
                      May 2008, T4 - L3, Dr. Ohenaba Boachie, Hospital for Special Surgery, NYC
                      ******
                      Sept 1967, T4 - T 11, without instrumentation, Dr Thomas Brown, Stanford

                      Comment


                      • #12
                        Hi Christina,
                        I totally understand how you feel - I have decided to have surgery after a long existence with this horrible disease. My curves are about 52 and 38.

                        I have done a lot of research and have experience of Chiropractors (no comment!) I now feel this is the right thing to do - I have heard too many people say that surgery is the only thing that can help - I truely beleive that.

                        My op is on the 13th November in Exeter, England.

                        All the best
                        Aged 32
                        Surgery in Exeter, UK on 11th November 2008

                        Comment


                        • #13
                          Dr. Wood

                          Christina,

                          I had surgery with Dr. Wood in December and would be happy to talk to you about it. I sent you a PM.
                          2000 34*L/39*T
                          2007 44*L/53*T

                          12.3.07 Posterior Spinal Fusion T4-T12
                          (initially planned T4-L1)
                          12.18.07 11*L/10*T

                          23 years old

                          Comment


                          • #14
                            My daughter had her surgery the week after school was out. She went back to school on time. She was a tired when she got home, but she went to a large scholl and had to walk from one end to the other all day. I was a teacher and I went back 8 weeks after my revision surgery.
                            T12- L5 fusion 1975 - Rochester, NY
                            2002 removal of bottom of rod and extra fusion
                            3/1/11 C5-C6 disc replacement
                            Daughter - T7 - L3 fusion 2004

                            Comment

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