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Surgery with Dr. Lenke

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  • #16
    Wow! I've just caught up with your wonderful news. It's amazing - everything has changed for the better. How relieved you must be!

    As others have said, this forum really is invaluable to those of us with Scoliosis. Perhaps we should all advertise it on our facebook pages in case there are some out there who might benefit from it.
    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


    • #17
      Doreen, I am so happy for you that you are all set with a top surgeon. Waiting is hard, but it will go faster than you think and wouldn't it be great if you get a cancellation call? I hope you do.
      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


      • #18
        What great news Doreen!!! So happy that you are in such capable hands. It's so amazing how God can just lead us to a place we never would have gotten if things had gone smoothly. =)

        So excited for you!
        Rebecca
        Age: 28
        Dx w/ scoli @ age 12 S curves T-40* L-42*
        wore night bending brace as teenager
        Curves changed to 50's plus or minus
        herniated disc L2-3, Discectomy October 2007
        fusion L2-3 November 2008
        Revision L2-3 Fusion, Removal of hardware August 2009
        Curves measuring 52 T&L September 2010
        Fused T4-L4, all posterior December 27th 2010
        gained almost two inches in height

        Before and After Exterior
        Before and After X-rays
        My blog: http://herscoliosisjourney.blogspot.com/

        Comment


        • #19
          Originally posted by mabeckoff View Post
          Glad that you have a surgeon now as well as a surgical date.Hope you will stay on the forum until you have surgery

          Melissa
          I will absolutely stay on the forum as it is the main source of inspiration/advice/support for me. How are you doing today, Melissa? Any improvements?
          44 years old at time of surgery, Atlanta GA

          Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
          Post-Surgery curves ~10 degrees, regained 4 inches of height

          Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
          2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

          http://thebionicachronicles.blogspot.com/

          Comment


          • #20
            Originally posted by titaniumed View Post
            Doreen

            Great news! Nice that you have been spared the anterior.

            Be prepared for that call. I believe Rita ended up on the wait list and was called in much sooner....Cancellations do happen. She was one who was in MAJOR pain with huge curves, I believe they were in the 90’s, to no pain after surgery. Dr Lenke must have parameters based on curve type, and spine status.

            It was probably a good thing that you started posting here and finally took the steps to finding the right surgeon. As one who was almost out of time myself, and having met rejected scoli patients,(Osteoperosis) I’m very happy for you.

            There are many of us who waited who are in the same position, that need to address their spines with a scoliosis surgeon. Waiting or doing nothing about it, can lead to heartbreak and future pain.

            Ed
            Hi Ed,
            I've been speaking with Rita and she did mention her date was moved up a couple of different times. I am so incredibly thankful for this forum because without it, I wouldn't know what is possible to improve a scoli situation.

            Warmly,
            Doreen
            44 years old at time of surgery, Atlanta GA

            Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
            Post-Surgery curves ~10 degrees, regained 4 inches of height

            Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
            2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

            http://thebionicachronicles.blogspot.com/

            Comment


            • #21
              Originally posted by jrnyc View Post
              what kind of a "machine" is it...if i may ask...
              i am ignorant of what the medication comes in...
              i used to get IV antibiotics for Lyme, and they were in a round infusion container
              that was hooked up to my IV line....
              but it sounds like Forteo is very different....
              ?????

              jess
              Hi Jess,
              Forteo comes in a pen shaped (thick like a marker) dispenser (medication is preloaded into the pen) where I screw on a new needle every day for the injection. The travel case holds the "pen" and 7 needles. The travel case is packed into an insulated bag that holds two ice packs.
              44 years old at time of surgery, Atlanta GA

              Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
              Post-Surgery curves ~10 degrees, regained 4 inches of height

              Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
              2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

              http://thebionicachronicles.blogspot.com/

              Comment


              • #22
                Thank you so much for your comments, everyone! I must say, the hotel and the B&B beds were horrible for my back (way too soft). Thursday evening we went to bed early because we had to wake up at 3:45am to catch an early flight home. At 1am I woke up in pain and couldn't really fall back asleep. By the time we got back home at 10a, I was completely exhausted. I pushed through doing exercises and yoga, skipped a walk since I did a ton of walking in St. Louis, and ran some errands. I took a pain pill at 7:30p and slept so peacefully last night. What a difference solid sleep makes! Speaking of exercise, I need to do that now.

                Warmly,
                Doreen
                44 years old at time of surgery, Atlanta GA

                Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
                Post-Surgery curves ~10 degrees, regained 4 inches of height

                Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
                2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

                http://thebionicachronicles.blogspot.com/

                Comment


                • #23
                  Before Xrays

                  Here are my before xrays

                  Thoracic 70 Lumbar 68 July 2011.jpg

                  Warmly,
                  Doreen
                  44 years old at time of surgery, Atlanta GA

                  Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
                  Post-Surgery curves ~10 degrees, regained 4 inches of height

                  Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
                  2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

                  http://thebionicachronicles.blogspot.com/

                  Comment


                  • #24
                    Originally posted by Doreen1 View Post
                    Here are my before xrays

                    [ATTACH]1073[/ATTACH]

                    Warmly,
                    Doreen
                    Can't wait to see the 'after' x-rays. I wanted to let you know that I am enjoying your blog... write some more!
                    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
                    Halo Traction & 1st. surgery on March 22nd. 2011
                    Spinal Fusion on April 19th. 2011

                    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



                    http://tinyurl.com/Elias-Before
                    http://tinyurl.com/Elias-After

                    Comment


                    • #25
                      Unable to Sleep

                      I noticed for the past several evenings I'm having issues falling asleep. Everyday I exercise, do yoga and walk, and only have one cup of coffee in the morning. By the time I go to bed, I'm tired and fall asleep reading. When I turn off the light, I end up laying there wide awake for 2 - 3 hours. A few of those times I'm in pain in which I take a pain med, but more of those evening, the pain is not worse than it normally is. I don't want to take a pain pill to fall asleep if I'm not having higher amounts of pain. I'm allowed to take melatonin with Forteo but that hasn't helped at all either.

                      I have an appointment with my GP this afternoon to see what my options are. I've been experiencing muscle tightness/spasms during the day between my shoulder blades. I plan to ask if hydrocodone is a muscle relaxer; if not, do I need one to help with the spams?

                      Anyone experience sleeping issues? My endo said it is not related to Forteo, but the knee and ankle aches are a side effect of Forteo.

                      Warmly,
                      Doreen
                      44 years old at time of surgery, Atlanta GA

                      Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
                      Post-Surgery curves ~10 degrees, regained 4 inches of height

                      Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
                      2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

                      http://thebionicachronicles.blogspot.com/

                      Comment


                      • #26
                        A few months before my son had surgery he had a lot of muscle ache in his upper back and the pharmacist suggested an over-the-counter medication that contained both a pain killer and a muscle relaxer and they seemed to work well and helped him get a good sleep. I can't remember the name of it but they are on the larger side, oval, white on one side and green on the other. I'll see if we still have the package around.

                        I used to take melatonin to help me sleep but last time I think I took too much and had nightmares all night along with the worst sleep ever so now I'm reluctant to take any. I do have an ongoing prescription for Ativan that on some nights I break a pill in half and it works wonders. Not all doctors will prescribe this type of drug though b/c it can be highly addictive. Mine are strictly for sleep or for the rare crazy anxious moments that I get sometimes but since I'm not dealing with BC Children's Hospital anymore, my anxiety is gone.
                        Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
                        Halo Traction & 1st. surgery on March 22nd. 2011
                        Spinal Fusion on April 19th. 2011

                        Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



                        http://tinyurl.com/Elias-Before
                        http://tinyurl.com/Elias-After

                        Comment


                        • #27
                          Sleep Issues

                          Just returned from the doc and he said I have "sleep initiation issues" caused by the stress of everything I'm going through with the surgery journey. He prescribed Ambien which I've never taken before. Has anyone here taken Ambien? I'm really, really looking forward to sleeping early and soundly tonight. He also explained that while the hydrocodone I take for pain will help with muscle spasm pain, but will not stop the actual spasm. Doc won't prescribe x3 meds (pain, sleep and relaxant) for obvious issues and I certainly don't want to take this type of "cocktail." He did refer me to a different physical therapist because I told him my hubby and I didn't have a good feeling of confidence from the first PT he referred me to. He said deep tissue massage should provide some relief to the spasms but be sure to ask the new PT if there is scoli-specific techniques she can use.

                          It's nice to have the occasional fast in/out visit to the doc like I had today. Wish they could all be this quick.

                          Warmly,
                          Doreen
                          44 years old at time of surgery, Atlanta GA

                          Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
                          Post-Surgery curves ~10 degrees, regained 4 inches of height

                          Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
                          2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

                          http://thebionicachronicles.blogspot.com/

                          Comment


                          • #28
                            Ambian CR

                            Doreen,

                            I was off all surgical pain meds since March but had to wean off Methadone that I was on for many years (am off now for two months!) When I was on the meds I slept great but now that I'm not on anything, I have terrible insomnia. I finally went to the doctor and she prescribed Ambien CR - there is also Ambien. I was taking it for almost three weeks but it didn't give me a restful sleep as I would wake up many times but fall back to sleep. After two weeks, my heart was pounding, had severe anxiety and not feeling myself, kind of down. It was side effects from the Ambien CR and I had to stop taking it. After about five days, I felt better but now I can't sleep again. You may do very well with the Ambien, but I thought I'd tell you in case you do experience some of the side effects I did. I hope not, and I wish you a good nights sleep! Lynn
                            1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
                            2000 Partial Rod Removal
                            2001 Right Scapular Resection
                            12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
                            06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

                            Comment


                            • #29
                              Doreen--
                              I have had sleep issues since I was a little kid! The only time I didn't was when I was on the meds and hydrocodone for about a year--slowly, slowly cutting down. It was the best sleep I ever got. Everytime I cut back I'd have bad nights. When I was totally done it was quite a problem. Over the years I've tried it all and it's weird because some things literally make me more wide awake. The mildest but apparently very good one to use is Benadryl--not for me though just tried it again a couple months ago. My husband can take a half and is out like a light. Others I know find it helpful. I can relate to Ambien, melatonin doing nothing. On tough nights I usually end up with 2 or 3 tylenol PM which supposedly has about the same stuff in it. It finally works but takes a long time & makes you feel not so great the next day. I hope you find an answer. Sleepless nights are horrible. 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


                              • #30
                                Hope the Ambien works for you. My son tried it a few times while in the hospital b/c he was having trouble sleeping with that halo/weights on his head so they gave him Ambien and it seemed to have the opposite effect on him and actually kept him awake! Maybe it has that effect on teens? Let us know how it works for you.
                                Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
                                Halo Traction & 1st. surgery on March 22nd. 2011
                                Spinal Fusion on April 19th. 2011

                                Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



                                http://tinyurl.com/Elias-Before
                                http://tinyurl.com/Elias-After

                                Comment

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