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  • New Girl

    Hi everyone,

    I've been reading this forum since Nov 09 and this is my first post. I've loved reading all the wise advice and seeing such great caring support of one another. Since the first few weeks of logging on I've been telling friends and family...."I have found my people."

    I'm 55, 4 grown kids, married, and work in Colorado full-time. For the last 10 years, my orthopedic back MD has followed my slow progression, and in 2008 he urged me to consider surgery since my curves were advancing more rapidly. I have family in NYC, so I visited one of the NYC scoli doctors, and he gave me the pain/progression criteria, said come back in a year....I revisited in Sept 09, had new x-rays, showing curves of 64T, 65L, or 8 degrees more than my Colorado doc had measured. So now it will be determined if I am progressing with my next set of x-rays, as there is the possibility of pilot error, or difference in measuring Cobb angles. But the visual certainly told the story....Dr. B said I would need a lumbar anterior/posterior fusion, and if my bone density was not good, I would need thoracic fusion. Had bone density tested, showing osteopenia in spine, so it looks like the Full Frankie for me, if and when I decide to make the leap...

    I am not in horrifying pain. I don't take anything stronger than ibuprofen, but some days I take 6-8 of them. I'm never comfortable, always achey, stiff, have to keep moving and changing positions constantly, but not "cattle prod pain", so it's not a slam-dunk decision for me. From my neck to my waist, it feels like I went through a trash compactor- there is no room for everything and it's all jammed up and harder to breathe and I can't see over the steering wheel as well as I once could! If I have surgery, I would want to wait until long-term disability kicks in next October, and preferably into the spring of 2011, so I can get past another winter resort season, workwise. So a full year of contemplating, obsessing, wondering, and worrying. I will need coaching. Please?

    So I just wanted to get on the same page with everyone, come out of the shadows, and many thanks to all of you....
    Amy
    58 yrs old, diagnosed at 31, never braced
    Measured T-64, L-65 in 2009
    Measured T-57, L-56 in 2010, different doc
    2 lumbar levels spondylolisthesis
    Exercising to correct

  • #2
    Hi Amy, Welcome to the forum! As you have seen, there are a lot of fantastic people on here with a lot of knowlege, sympathy and empathy. Ask any question and you will receive many answers based on our own experiences. Best wishes.
    Vali
    44 years young! now 45
    Surgery - June 1st, 2009
    Dr David Hall - Adelaide Spine Clinic
    St. Andrews Hospital, Adelaide, South Australia
    Pre-op curve - 58 degree lumbar
    Post -op - 5 degrees
    T11 - S1 Posterior
    L4/5 - L5/S1 Anterior Fusion

    Comment


    • #3
      Hi Amy -- I pretty much sit in the shadows reading too. I find the folks and their posts here to be so helpful and positive. No surgery yet for me, but getting very close. Look forward to meeting you here.
      Last edited by gmw; 03-28-2010, 07:22 AM.
      Glenda
      Age 66 Georgia (63 at time of surgery)
      Bi-lateral laminectomy 2006
      Kyphoscoliosis, approx 38* lumbar scoliosis, stenosis, disk herniations, lower back and hip pain, w/radiating pain, stinging and numbness in legs.
      A/P fusion (T10-S2) 5/17/10 and 5/20/10
      Dr Yoon, Emory Orthopaedic and Spine Hospital, Atlanta, GA
      Pleased with outcome

      Comment


      • #4
        Hi! I feel much the same way as you. Not horrible pain, most of the time, but almost always uncomfortable. My curve keeps progressing as well, so I decided to go through with it. It is such a hard decision to have such extensive surgery. However; as you know, things just continue to get worse. Good luck!
        Janet
        36 year young cardiac RN
        old curve C 29, T 70, L 50
        new curve C 7, T 23, L 20
        Surgery June 11, UCH, Dr. Cronen T2-L5, posterior
        Revision December 20 L5-S1 with pelvic fixation
        and Osteotomy to L3 at Tampa General Hospital

        Comment


        • #5
          Hi Amy - i got on the forum in January and am having surgery on April 15. It is a tough decision as I feel good and have a good quality of life. I realize I have pain most of the time, but adjust to it. So it's very scary to know I am going in good and coming out different. However, I know I will have to do the surgery at some point as I have spondylolithesis happening. So I figure do it now while I am healthy, fit, good support, and good doctor. Good luck in your decisison process and this forum is great for learning and connecting.
          Shari
          Shari - 55 years old
          Pre-Surgery 62 degree thorasic curve with shifting.
          Post op 13 degree curve.
          Successful surgery 4/15/10, T3-L2 fused.
          2nd surgery to reopen incision 10" to diagnose infection, 5/18/10
          Beaumont Hospital, Royal Oak, MI - the late Dr. Harry Herkowitz
          www.scoliosisthejourney.com

          Comment


          • #6
            Welcome Amy - You will know when the time is right to make the leap into surgery. We all struggled with "should we or should we not" - "now or later". Take it from mek - once you were in as much pain as I was in it was not much of a decision. Trouble with the heart and lungs makes it a little easier to make the leap. And, then, you can join the rest of us on the "other side". Welcome again to the forum.
            Rita Thompson
            Age 46
            Milwaukee Brace wearer for 3 years in childhood
            Surgery Mar 1st - 95 degree thoracic curve
            Surgery by Dr. Lenke, St. Louis, MO
            Post-surgery curve 25-30 degree

            Comment


            • #7
              Hi Amy. When I was 55, I was just starting to experience moderate pain and it was beginning to impact my life. I saw my Surgeon in June 08 and he said I should have the surgery within 12 months. I had it 9 months later, just short of my 58th birthday. My curve was progressing at that point (2 degrees in 9 months.) I was lucky, my bones were good and my surgeon believes (without a ct scan to prove) that I am fully fused.

              I am glad I had the surgery when I did. I had time to get fit, and my moderate pain allowed me to get fit. But prior to getting fit, the pain was increasing and if I'd left it too long, I doubt I could have achieved the fitness I did. I believe it helped in my recovery. Apart from withdrawals from oxycontin, and weeks of dizziness which my surgeon attributes to the antibiotics given in surgery (not sure I believe this!) I had an easy recovery. It's great to be straight, taller and pain free.
              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


              • #8
                Hi Amy,

                Welcome to the forum. This is the best bunch of people you will find anywhere. I know it's a scary decision when/where/if to have the surgery. Good luck in your decision, and ask any questions you might have.

                The people on this forum saved my sanity. Without them I would have been in the looney bin.
                __________________________________________
                Debbe - 50 yrs old

                Milwalkee Brace 1976 - 79
                Told by Dr. my curve would never progress

                Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
                Pre-Surgury Thorasic: 66 degrees
                Pre-Surgery Lumbar: 66 degrees

                Post-Surgery Thorasic: 34 degrees
                Post-Surgery Lumbar: 22 degrees

                Comment


                • #9
                  Hi Amy,

                  This is the best place.These are the best people. They will answer all your questions and make you feel at home

                  Welcome

                  Melissa

                  Comment


                  • #10
                    Hi Amy and welcome! I think a lot of us lurk around just reading here until we finally send our first post. I don't exaggerate when I say this forum changed my life. It helped me make the decision for surgery, helped me find the right Dr. and was a wonderful resource esp. in those stressful weeks leading up to surgery. Scoliosis is not all that common a condition and to be able to vent and share with others in this journey is wonderful. You will find lots of supportive friends and good, solid information here.


                    Anne in PA
                    Age 58
                    Diagnosed at age 14, untreated, no problem until age 50
                    T4 to sacrum fusion
                    63 thoracic now 35, 92 lumbar now 53
                    Dr. Baron Lonner, 2/2/10
                    Am pain-free, balanced, happy & an inch taller !

                    Comment


                    • #11
                      Ladies,

                      Thank you so much for making me feel so welcome. This is wonderful. I've been quite hooked on reading this forum, and I've learned so much. This is kind of like being attached to one of the medical TV shows, like Grey's Anatomy or something, except that EVERYONE has what I have!!

                      Jennifer...Yes, I have re-entered the world of better fitness, in anticipation of whatever. Several years back, before I was considering surgery I was pretty devoted- thinking it would ward off a surgical outcome. Then at some point, I got nervous every time I would tweak a muscle or feel unusual soreness, partly as a result of my doctor being worried about the spondyl.... (too major a word to write out every time!) slipping further. So I backed off. Interesting to find that the NYC doc said not to worry. The many differences in medical opinions. It's been liberating to think that I will eventually- sooner probably than later, have the surgery. So I've been going for it and loving it. Kind of like being in control in some small way.

                      Again, thank you all for welcoming me, and I am so glad I found my people.

                      Amy
                      Amy
                      58 yrs old, diagnosed at 31, never braced
                      Measured T-64, L-65 in 2009
                      Measured T-57, L-56 in 2010, different doc
                      2 lumbar levels spondylolisthesis
                      Exercising to correct

                      Comment


                      • #12
                        Amy--I want to squeeze in one more welcome here. I'm sure you've already learned so much as I did. Your analogy of the trash compactor from neck to waist is perfect. That's what I always felt like too. So glad that part is stretched! 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


                        • #13
                          Hi Foofer

                          I think of it as Grey's Anatomy with a touch of "Laugh In". You really need a good sense of humor to have scoliosis.

                          Do you work for a ski area? Just wondering since Ive skied all over Colorado.

                          I had an A/P 26 months ago. There are a few of us here that have done that. Ask any questions you like.

                          Welcome
                          Ed
                          49 yr old male, now 63, the new 64...
                          Pre surgery curves T70,L70
                          ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                          Dr Brett Menmuir St Marys Hospital Reno,Nevada

                          Bending and twisting pics after full fusion
                          http://www.scoliosis.org/forum/showt...on.&highlight=

                          My x-rays
                          http://www.scoliosis.org/forum/attac...2&d=1228779214

                          http://www.scoliosis.org/forum/attac...3&d=1228779258

                          Comment


                          • #14
                            Hi foofer, I was in a similar situation to yours and had A/P surgery 12 days ago from T10-Pelvis and it was the best decision I have made. While the first few days after surgery were miserable, I'm so happy I did it at this point as I know I won't have to worry about this the rest of my life (assuming my fusions take that is). It's a tough decision for sure but I suspect the vast majority of people of this forum are far happier after surgery.

                            Rich
                            Pre-Surgery Lumbar 65 degrees
                            A/P Fusion T10-Pelvis by Dr. Christopher Good
                            Virginia Spine Institute, Reston, VA 3/17/10, 3/18/10
                            Post-Surgery Lumbar 19 degrees, and 2" in height

                            Comment


                            • #15
                              Rich,
                              I am so glad you are pleased with your decision and the outcome. I love love hearing the good news...Thanks!

                              And Ed,

                              So happy to finally meet you....I love reading your posts. I have LOL'ed many a time, especially after the Fabio/Benny Hill pics.

                              I know I will have millions of questions and will just have to pace myself.

                              I work for a ski retail store as their seamstress/tailor. I live in Aspen, but don't usually admit to it, because of the glitzy reputation and such. I've lived here since 1976, raised 4 kids here There is a strong community of people here who work and play, make a normal income (or subnormal), love the mountains....

                              This may come as a terrible shock to you, but I think we may be twins. We're born on the same day. Maybe not though, as I guess I have a few years on you and I don't look a thing like Fabio.

                              Thanks for welcoming me!
                              Amy
                              Amy
                              58 yrs old, diagnosed at 31, never braced
                              Measured T-64, L-65 in 2009
                              Measured T-57, L-56 in 2010, different doc
                              2 lumbar levels spondylolisthesis
                              Exercising to correct

                              Comment

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