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  • Feeling grateful for all of you

    Here I am, 24 days left and counting. This morning, after a good night's sleep, and my cold getting better, I am feeling more calm. What hit me as I read the forum this morning is what would I have done if I hadn't stumbled upon all of you here? Where would I have ended up having this surgery? With some local-yocal like my infamous Dr. Dumbell? I thank God that I found this place, without even trying hard that day last May when I came home in tears from Dr. Dumbell's office. Back in the dark ages before the internet, I would have had to rely on word-of-mouth. And you just don't run into that many people in every day life with scoliosis this bad. I am so informed, and have so much been-there-done-that feedback and advice from you all. Anything I ask I get great advice for. I can't imagine going into this blind.

    So thank you all for being there and putting up with my nuttiness. I know I'm still on that rollercoaster, and I might get nutty again, but that's ok. I'll be JUST FINE. You must know by now that I'm a worrier at heart, but you know what? I think that I'm getting a little bit excited, as opposed to nervous. I'd say the current stats are 85% nervous, 15% excited.
    __________________________________________
    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

  • #2
    Hi Debbe,
    God does find ways for us to get the information we need. You were very fortunate to stumble onto this forum way before your surgery. I had to go with word of mouth advice, but I know that God was looking out for me also. My source was my God child who works for Depuy a division of Johnson and Johnson. I have some of their hardware installed in my spine now. I had lost track of my God child for several years and just when I needed her most, God brought her back into my life by a strange set of circumstances. I would say that without faith in God, it would be very difficult to get through this surgery. That isn't to say that it isn't possible, but faith really helps. I am so glad that your cold is getting better. I think that getting a cold will boost your immune system, so that is a good thing. By the way, I am getting excited for you also. Take care, 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


    • #3
      Debbe-- I'd like to echo what Sally said. And also that I didn't find the forum till 5 months post-op-- and all I had to go on was what my doctor told me and the two books he recommended (which were soooo helpful!)-- the Wolpert book and the Neuwirth book. Otherwise it was just me and my family, and we were really new to this whole scenario. God is so good and helped me through all this-- and then later on I found the forum, so I got some "people" help too. So I also feel so grateful for the people here-- they are such a great source of support and encouragement!

      I'm also excited for you! The waiting is hard, the surgery is difficult, but then you are over the main hurdle and ready to recover, with a new (reconstructed) spine that is such an improvement! That's what helps as you go through the recovery process-- knowing that you are so much better off, even though it takes awhile to get back into doing things... You'll do great. It really DOES get better and better!
      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


      • #4
        I just got off the phone with a friend who needs surgery for her scoliosis and kyphosis. She has been testing the waters by some "peeks" at the forum. I think that's the best way for her to learn about others' experiences.

        As for me, I am celebrating my fourth month post-op birthday today and I am UNQUESTIONABLY better than I was before surgery. It's such a joy to have this "improved" skeletal system which can support me through the next few decades of life.
        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


        • #5
          Well I am 25 years post op and I am so glad I found this site! It is a blessing for sure! Its great to be able to talk with people who have gone through the same things I have, and can give advice for things I go through now.

          This site is fillled with great people.

          Brad
          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


          • #6
            Sally, Susie, Ginger & Brad,

            Thanks for your responses. This site is full of great people. I do believe in God, although I'm not overly religious. When I was about 12, my parents threw themselves into (what I think) was an over-the-top, almost fanatic religion, and it just turned me off completely.

            It's a new day today, and I'm still feeling good. My 85/15% stats probably still apply. I know that before D-Day I'll probably go over the edge again and believe me I'll be here for support.

            Thanks again,
            __________________________________________
            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


            • #7
              Hi Debbe,
              I understand about religious fanaticism. My Mother in law was a religious fanatic and it really is a turn off. I decided that it is best to trust God rather than people. Whenever I have to deal with a difficult and stressful situation, I just think to myself, "Just trust in the Lord". He does care for us.
              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


              • #8
                And my mom was the exact opposite-- a dyed-in-the-wool secular humanist/atheist to her dying day. Sometimes we do a u-turn from what our parents believe.
                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


                • #9
                  Good Luck

                  My Prayers are with you and may God bless you during your surgery and after thru your healing process. I will be praying for you.

                  Comment


                  • #10
                    Good news about your daughter

                    Hi Debbe,

                    That's great news about your daughter! (I guess that post was on another thread, I'm a little late to reply here...) At least now you can 'just' focus on your upcoming surgery and not have to worry about her back, too.

                    I had to smile, too, at your post about your daughter before she had the dr's appt--a few months ago I totally convinced myself that my 3 y/o son's back didn't look right. I was convinced he had a curve, so I took him to see the pediatrician, who indulged my worry with an x-ray. It showed two very slight, 5-degree curves, which definitely put my mind at ease!

                    I'll be thinking about you as your surgery date draws near.
                    Last edited by leahdragonfly; 09-24-2008, 08:44 PM.
                    Gayle, age 50
                    Oct 2010 fusion T8-sacrum w/ pelvic fixation
                    Feb 2012 lumbar revision for broken rods @ L2-3-4
                    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


                    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
                    2010 VBS Dr Luhmann Shriners St Louis
                    2017 curves stable/skeletely mature

                    also mom of Torrey, 12 y/o son, 16* T, stable

                    Comment


                    • #11
                      I'm feeling pretty good tonight. I was going to give my boss notice this Friday, but she decided on a last minute vacation starting tomorrow. So I called her this afternoon and told her about it and she was nice as pie. I don't know why I was so nervous about that part, I'm just crazy.

                      It's kind of a relief, so now I can relax a little more at work and not have to worry about getting so much done, just wrapping up and transitioning work. I can concentrate on ME now.

                      I did tear up a little when we were out buying PAINT tonight when I realized that 3 weeks from tonight, I'll be all druged up. I quickly got over it. My husband goes into this 'nesting' phase whenever major health events are happening. The last time was prior to our 9year old daughter's birth, and now this. He's re-done rooms, new furniture, flatscreen tv, new windows, redid the deck, got me a hot tub.... Believe me when he gets on a roll ike this I don't stop him. LOL I'll have a great house to come home and recover in.

                      Thanks for listening to me ramble. Oh, and I've spoken to 3 of Dr. N's patients in the last few weeks. I even met one in person. They're all wonderful, although I dont think any of these ladies have made it here. They just can't say enough good about him. So I'm feeling good. Very good.
                      __________________________________________
                      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


                      • #12
                        Originally posted by leahdragonfly View Post
                        Hi Debbe,

                        That's great news about your daughter! (I guess that post was on another thread, I'm a little late to reply here...) At least now you can 'just' focus on your upcoming surgery and not have to worry about her back, too.

                        I had to smile, too, at your post about your daughter before she had the dr's appt--a few months ago I totally convinced myself that my 3 y/o son's back didn't look right. I was convinced he had a curve, so I took him to see the pediatrician, who indulged my worry with an x-ray. It showed two very slight, 5-degree curves, which definitely put my mind at ease!

                        I'll be thinking about you as your surgery date draws near.

                        Thanks Gayle,

                        You know, Jenna's doctor is very good, and he was so sweet as he explained nicely that sometimes, when parents see their child's back every day, they think that things are getting worse when they really are not. I was so happy to be wrong. I could have jumped up and kissed the man.

                        Thanks for your thoughts.
                        __________________________________________
                        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


                        • #13
                          hot tub

                          A new hot tub! wow. Make sure he gets one with the ozone bulb to kill off the bacteria. With the ozone system, you will not need chemicals in the water with normal use. No chemicals, no smell, no residue, no mixing and safer.

                          After surgery, I was in my tub 4 times per day. The heat really worked wonders for the pain. A bath tub works well also. I did this for 3 solid months,
                          tapering off, then the pain subsided.

                          Make sure you drink lots of water, you lose quite a bit in a hot tub sweating. In a hot tub, in 20 minutes you will lose 2 lbs. This is water loss, and it needs to be replaced with high quality water, no tap water!!!

                          You are on your way!

                          PS Im 8 months post and I have no back pain. I took it real easy!!!!

                          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
                            Ed,

                            We use bromine for the hottub. The first week, I got hot tub foliculitis and was furious at my husband for messing up. I recovered but now we're really careful with checking the levels before we go in.

                            How long after surgery did you start using the hot tub? Was it hard to get in & out?
                            __________________________________________
                            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


                            • #15
                              Originally posted by debbei View Post
                              Ed,

                              We use bromine for the hottub. The first week, I got hot tub foliculitis and was furious at my husband for messing up. I recovered but now we're really careful with checking the levels before we go in.

                              How long after surgery did you start using the hot tub? Was it hard to get in & out?
                              I'm so jealous of people that have a hot tub. I love them. They take so much weight off my back and I feel like I can stay there forever. I can't get one because of the mother n law... *sigh* The resorts my wife & I go to I am in their hot tub almost the entire time.

                              If you wear swimsuit in your hot tub be careful in how you wash them. The chemicals from your laundry detergent can mess the water up somehow. I donno all the details but both my neighbours who have hot tubs have both said the same thing. Both use their hot tubs nude anyway. heh

                              I'm glad you're doing better Debbe keep up with a positive attitude and it will definately help with your surgery and recovery.

                              Brad
                              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

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