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  • Hi, I am new here...I'm am considering surgery and terrified

    Hello, All!

    I am new here and I am considering surgery and well, I am just plain terrified.
    I am 23 years old with a 55 dergree curve. I am seeing a surgeon next week and I am wondering if anyone would mind sharing their advice with me. I know he is going to tell me I need surgery. Shots alone give me the creeps, so the thought of surgery has left me with a lot of anxiety. Thank you in advance to all who respond.
    Upper curve 36*
    Lower curve 55*

  • #2
    Hey, Rach! Welcome to the forum! There's quite a few younger gals around your age that have just gone through surgeries, so I'm sure they'll have some wisdom to share with you. Yes, the surgery is scary to think about, but please try to get some strength from the fact that so many of us have gone through it and are living testimonials. If we can do it, you can too. It really helps to be able to share how you feel about it with people who truly understand what you're going through. Take care.
    71 and plugging along... but having some problems
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

    Comment


    • #3
      We've all been where you are. I posted a message very similar to yours well over two years ago, and now I'm 9 months post-op and so glad to have it all behind me. It took me two years to gather up the courage to have the surgery.

      Wait and see what the surgeon says, and be sure to get more than one opinion.
      Chris
      A/P fusion on June 19, 2007 at age 52; T10-L5
      Pre-op thoracolumbar curve: 70 degrees
      Post-op curve: 12 degrees
      Dr. Boachie-adjei, HSS, New York

      Comment


      • #4
        loves to skate

        Welcome Rach,
        I too was terrified before my surgery,(who isn't) and I didn't find out about this forum until 2 weeks ago at 3 1/2 months post-op. I am 68 years old now and doing just great, not perfect yet but much better than I expected for my age. Since I didn't have the benefit of this forum before surgery or knew anyone who had this type of surgery, all I could do was pray for peace. I also bought Peggy Huddleston's CD's for relaxation and they helped a lot. The support on this forum is really wonderful. I wish you well.
        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


        • #5
          good books...

          Rach-- I was just thinking about you some more... one thing that helps with the fear aspect is to know more about your condition, possible treatments, surgery, etc. There are two books that I read and re-read several times before my surgery-- and many of the folks on the forum have also. One is written by a guy who had scoliosis (he's a member of this forum) and went through the surgery... it is so informative and easy to read, and it's written from the patient's perspective. It is called Scoliosis Surgery: The Definitive Patient's Reference and the author is David Wolpert. You can order it through Amazon or the National Scoliosis Foundation. If you order it through NSF, a portion goes to them. That one I toted everywhere, even taking it with me to the hospital (as if I'd actually read it then!) The other book is written by a scoli surgeon--Michael Neuwirth, and is entitled The Scoliosis Sourcebook. This one goes into other options for treating scoli, but also deals with surgery.

          You'll find that everyone is different, so scoliosis, its treatments, and surgeries are not a "one size fits all" thing as far as information goes, but you'll definitely get a really good picture from these books. If you choose just one, and think that surgery is indeed what you're facing, I would recommend the Wolpert one.

          Best wishes as you discover more and more about your own journey. Again, keep us posted on your progress.
          71 and plugging along... but having some problems
          2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
          5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
          Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

          Corrected to 15°
          CMT (type 2) DX in 2014, progressing
          10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

          Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

          Comment


          • #6
            I'm 23 and almost 4 months post op (I can't believe how fast the time has gone). You don't need to worry about fear of needles - you won't know any of the graphic stuff is happening because you'll already be knocked out. If you want a detailed description, I wrote a day-by-day post in December about my hospital stay (you can search for it, or go to Threads Started by Vndy if you click on my name). I was pretty stressed out for the months between making the decision to have surgery (August) and the surgery itself (December). Being on the "other side" is almost easier than the worry preceding surgery. Please feel free to PM me if you have any specific questions - I'll do my best to help!
            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


            • #7
              Hey Rach,

              My 13 year old would scream when having a splinter removed from her finger so obvioulsy going into surgery we were all petrified as to how she would cope with the pain. She breezed through and it shocked us all as to how well she did.

              The stress and anxiety BEFORE the surgery is sometimes a LOT worse than the actual thing. You will be amazed at yourself and what you can endure once it's all behind you!!!!!

              Good luck and welcome to the forum!

              Cheers
              Del
              Elysia 16 in Feb 2010
              Sydney - Australia
              Feb 2008 Fused T5-L1 and 5 ribs removed.
              Dec 2009 - Crankshafting
              Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
              L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

              Comment


              • #8
                Hi Rach,

                I'm 21 - almost 9 yrs (!!) post-op from my approx. T3-L3 fusion & almost 7 yrs post-op from my L3-pelvic extension. It's looking like I'm heading for a revision of the latter, probably about June. Please don't be freaked out by that - mostly the revisions have been needed due to other medical problems affecting the fusion.

                The wise people here are right that the waiting is a shocker - make sure you take care of yourself and try not to stress too much (I know, easier said than done!). If you do need the surgery, make sure you trust your surgeon, and ask him every & any question/query/fear/etc. that you can think of during upcoming appointments - for me at least, knowledge is one of the best remedies for pre-op nerves!

                Anyways, sorry to ramble! But seeing as I've "been there, done that" & am back to do it again, I just wanted to add my name to the list of "PM me if you want to talk or ask questions"-people :-)

                Best wishes to you - take care :-)

                Comment


                • #9
                  Hi there, I am 28 and am meeting a surgeon on Friday. I have had surgery before (bowel resection in 2004). I was petrified before I had surgery..Honestly, you are asleep when everything is happening...and when you are awake you are heavily medicated and relaxed...so you have no idea what is really going on. I had some moments of panic before surgery but lookinbg back..it was the best thing I have ever done for myself. I am sure you will be fine!!
                  28 years old. Dx at age 14.

                  1994 20T/20L
                  1998 22T/20L
                  2002 30T/28L
                  2006 34T/28L
                  2008 43T/34L

                  considering surgery in the near future as the curvature is getting progressively worse and for pain management.

                  XRAYS and pics at 28 years old. http://www.freewebs.com/skiergirl24/apps/photos/

                  Comment


                  • #10
                    Thank you, everyone for answering!

                    I didn't think anyone would respond. It already comforts me to know people care and also are going through the same thoughts and emotions as me. Tomorrow is my first consultation with the surgeon, I'm a little nervous....I know what he is going to say. One more question, by chance, does anyone know of a good specialist in Florida?

                    Thank you.
                    Rachel
                    [COLOR=Navy]
                    Upper curve 36*
                    Lower curve 55*

                    Comment


                    • #11
                      Check out this thread: http://www.scoliosis.org/forum/forumdisplay.php?f=115
                      28 years old. Dx at age 14.

                      1994 20T/20L
                      1998 22T/20L
                      2002 30T/28L
                      2006 34T/28L
                      2008 43T/34L

                      considering surgery in the near future as the curvature is getting progressively worse and for pain management.

                      XRAYS and pics at 28 years old. http://www.freewebs.com/skiergirl24/apps/photos/

                      Comment


                      • #12
                        loves to skate

                        Hi Rach,
                        I would recommend you go to www.srs.org. I copied this off of their website for you.
                        The Scoliosis Research Society (SRS) is an international society that was founded in 1966 with 35 members. It has gained recognition as one of the world's premier spine societies. The SRS has maintained a commitment to research and education in the field of spinal deformities. Strict membership criteria ensure that the individual Fellows support that commitment. Current membership includes over 1,000 of the world's leading spine surgeons, researchers, physician assistants and orthotists who are involved in research and treatment of spinal deformities.

                        Hope this helps.
                        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


                        • #13
                          Rach,

                          I would love to stay in touch with you....sounds like we have alot in common.... 55 degrees and considering surgery....and scared to death....
                          Funny bc our tag in our original posts were very similar!!

                          Where do you live? Sounds like you mentioned Florida? I am in NC

                          I would love to hear what your doc says...I am getting a few other opinions and going to another doc here in Chapel Hill on Friday....I think getting as much info and feeling GOOD about the doctor is important!!

                          Obviously I don't want to have it now....but I know it is definitly a possibility that I will need to knock it out! Are you gathering info and getting different opinions? Let me know how your consulation goes today! Where is your curve located?? Mine is 55 Thoracic...

                          you can PM me if you would like as well! Good luck at your appt!
                          Summer from NC
                          Diagnosed 11yo
                          wore brace for 4 years
                          48 degrees in 1997 post bracing
                          55 degrees Feb 2008
                          considering surgery in future...

                          Comment


                          • #14
                            To Summer and Rachel --

                            Before you consent to surgery, you might investigate the Schroth physiotherapeutic method. In essence a trained physiotherapist would analyze the configuration of your scoliosis and teach you exercises that can halt progression, reduce or eliminate pain, and in many cases reduce the degree of abnormalities. In other threads on this forum, particularly in the Adults/Non-Surgical, you can read the impressions of people who've tried it. Just search on Schroth. If you ask an orthopedist about physical exercises he will probably tell you they don't work. But there are nearly 90 years of history behind this treatment, it is not unproven. The main Schroth clinic in Germany is still going strong with 200 patients at a time:

                            www.skoliose.com

                            There are several Schroth clinics in the US now. The closest to North Carolina or Florida would be Scoliosis Solutions in Rockville, Maryland. They work with Luke Stikeleather, a very experienced orthotist who's trained to make braces for Schroth patients.

                            http://www.scoliosissolutions.org/index.html

                            Best of luck to both of you whatever you do!

                            Comment


                            • #15
                              loves to skate

                              Dear Writer,
                              Is there scientific evidence to support this? I went to a Chiropractor for non surgical spinal decompression at a cost to me of over $5,000.00. After the treatments I did several exercises every day for over a year. Did it work?
                              I had minimal relief from my pain for a few months but it didn't last. So be very careful about alternative treatments even when there are glowing testimonies.
                              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

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