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Surgery with Dr. Lenke

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  • Surgery with Dr. Lenke

    Hi Everyone,

    We are staying in a cute bed and breakfast in St. Charles; however, the internet here is horrible. Unable to send emails today, but here are my updates.

    Mission accomplished! Met with Dr. Lenke yesterday and he said he can help me and the earliest surgery date available was Aug 1. I'm on the cancellation list and feel good that the surgery date will be bumped up. I was able to meet with Heidi and Nancy from this forum who just so happened to have morning appointments with Dr. Lenke for their 1 year follow ups. Heidi & Nancy, thank you so much for spending time with me, it really helped pass the time and it was very comforting talking with you. Total time in Lenke's office 5 hours! I was told to expect 3 hour wait time when I scheduled my appointment last month.

    Dr. Lenke said that I am very lucky my curves were right at his cut-off (70 degrees for new patients) otherwise, he would have referred me to someone else. It is interesting to see his recommendations compared to the Atlanta surgeon who canceled my surgery because of poor bone density (lumbar T score -2.4, thigh scores normal). Dr. Lenke was very pleased that I am on Forteo and said that even though I just started Forteo 3 weeks ago, that will not impact my wait time for surgery. He said if my date moves up, his will still operate regardless of how long I'm on Forteo. The Atlanta surgeon said to call her in 6 months after starting Forteo and she'll see where I am (obviously there is no need to make this phone call). Atlanta surgeon measured me at T72* and L58*, Lenke measured me at T70* and L68*.

    Lenke gave me a choice of surgeries: Option #1 T4 - L4 and have to come back for additional surgery to replace L5 within 2, 5 or 10 years. Option #2 T4 - sacrum and no need for future surgery. My response, "To the sacrum will be great... I don't want to have to come back, no offense." Dr. Lenke and his team all chuckled at that. Lenke explained most patients opt for the sacrum.

    He will do T4 - sacrum fusion, TLIF (Transforaminal Lumbar Interbody Fusion - an anterior surgery from a posterior approach so no need for a second anterior surgery as the Atlanta surgeon recommended), about 5 to 8 Smith-Peterson osteotomies, and 2 cages at L5 with BMP (bone morphogentic protein to build a stronger fusion). He estimates the surgery to last 6 - 8 hours (the Atlanta surgeon suggested 8 - 10 hours for her posterior surgery and a 4 - 5 anterior surgery 3 months later). On Lenke's scale of challenging surgeries 1 - 10, he ranked me at 1.5 (1 being the least challenging, 10 being the most challenging). The Atlanta surgeon told me she ranked me as a 6 on her scale. The Atlanta surgeon turned out to be a bit more conservative for my needs and there is nothing wrong with that because it has ultimately led me to Lenke's care.

    I am VERY relieved that I have a plan in place with Lenke.

    Warmly,
    Doreen
    Last edited by Doreen1; 09-22-2011, 04:14 PM.
    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/

  • #2
    that's great, Doreen
    so happy for you that it will work out with Dr Lenke!

    you mean August 1, 2012?
    will you stay on the Forteo til then?

    jess

    Comment


    • #3
      Hi Jess,

      Yes, 8-1-2012, Lenke is a popular guy! I am on a 2-year cycle of Forteo.

      I forgot to mention my Forteo experience at the Atlanta airport security check. I explained to a TSA agent I needed Forteo hand-checked (it cannot go through x-ray machines). While I'm waiting for the "hand check" agent to appear, another agent keeps telling me, "... just put your stuff in the cart and slide it through..." I explained to him why I couldn't and really didn't want everyone around me to have to hear what I needed to do with my special case. This guy insists I run it through the machine. At this point, my hubby and daughter are already through to the other side and are waiting for me. The special "hand-check" agent finally shows up, I explained what was in the case, please don't put it through the machine and he decides to be a funny guy and raise his voice making a bit of a scene. I was freaked out at this point and just wanted to be on my way. By the time he hands me the case back, he continues with a comment about, "... don't you trust your government employees to go a good job, blah blah." I get the Forteo case and turn to repack it into my purse and I am so upset I start crying. Poor hubby and daughter didn't know what was going on. I'm praying tomorrow morning experience at the airport goes more smoothly.

      I also forgot to say that Dr. Lenke expects to get a 70% - 75% correction! I simply cannot fathom that. I will be over the moon when it happens.

      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


      • #4
        Congratulations!

        Glad you finally met up with Dr. Lenke and the surgery is looking like a go!

        Glad you decided to go with the one surgery...although Mercy Hospital was great, I'd like to keep surgery experiences to a minimum.

        Congratulations again!

        Dollie
        Discovered scoliosis when 15 years old.
        Wore Milwaulkee Brace for 1.5 years.
        Top curve 85 degrees, bottom curve 60 degrees

        Surgery completed August 23, 2011 (during an earthquake, can you believe that?)
        Dr. Charles Edwards, II
        The Spine Center at Mercy Hospital in Baltimore, MD
        Before and after xrays:
        http://www.valley-designs.com/myspine

        Comment


        • #5
          Doreen this is such great news!! I am so glad everything has worked out for you. We need to meet for lunch soon here in Atlanta.
          Your airport experience sounds horrendous! What a bunch of jerks. Hope your return goes better.
          Take care and have a great trip back.
          50 years old!!!!!
          Wore Milwaulkee Brace 1976-77
          Original curve 36 degrees ( measured in the 70s)
          Advanced to 61 degrees 01/2011
          Surgery 07/11/2011
          Fused T1-L2 (curve now in the 20s!)

          Comment


          • #6
            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
            Melissa

            Fused from C2 - sacrum 7/2011

            April 21, 2020- another broken rod surgery

            Comment


            • #7
              Doreen, this is exactly why you need to go to a top guy, even if it's out of town. Your experience with the different answers from Lenke and your local surgeon are almost line for line like what I experienced in my consult with Dr. O'Brien after getting my initial information from my local spine surgeon. You are now in a whole different world of expertise, and exactly where you need to be. Great news!
              Stephanie, age 56
              Diagnosed age 8
              Milwaukee brace 9 years, no further treatment, symptom free and clueless until my 40s that curves could progress.
              Thoracolumbar curve 39 degrees at age 17
              Now somewhere around 58 degrees thoracic, 70 degrees thoracolumbar
              Surgeon Dr. Michael S. O'Brien, Baylor's Southwest Scoliosis Center, Dallas TX
              Bilateral laminectomies at L3 to L4, L4 to L5 and L5 to S1 on April 4, 2012
              Foramenotomies L3 through S1 in August 2014

              Comment


              • #8
                congrats, Doreen!!! We are SOOO happy for you! Hopefully the wait time will go quickly, and not too painfully. Hopefully, they will call you w/ a cancellation and you can go sooner. Tricky when you have to travel, but you are super motivated!
                It was fun to meet your husband and daughter. We'll be in touch, and we are here for you when you have questions.
                Hugs,
                Nancy
                Age 58
                Surgery w/ Dr Lenke August 23, 2010
                original curves 91 thoracic, 86 lumbar
                fused T1 to sacrum, new curves 50 and 45

                Comment


                • #9
                  Doreen--
                  I am so relieved and happy for you. You are now in the best hands possible. I hope your time goes fast and that you can get a cancellation earlier. This is great. 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


                  • #10
                    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
                    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


                    • #11
                      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

                      Comment


                      • #12
                        Doreen i'm so happy you got a surgery date with Dr Lenke. those are some major curves.
                        Kara
                        25
                        Brace 4-15-05-5-25-06
                        Posterior Spinal Fusion 3-10-10
                        T4-L2
                        Before 50T
                        After 20T

                        Comment


                        • #13
                          Wonderful news Doreen!!

                          My son never did get that appointment with our 'local' pediatric surgeon so while we were waiting I got online here and it was suggested that I contact Shriners so I did, and we ended up travelling out of the country and down two states and at first I was so overwhelmed with the whole idea but it all worked out so well that I am SO GLAD now that we did it and everything worked out way better than I thought and I will continue to travel to see this surgeon in Portland and I cringe at the thought of what would have been if we actually got that appointment here in BC b/c the care my son needed was way beyond their scope I truly believe. Life is so funny sometimes.
                          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


                          • #14
                            Doreen,
                            I am so happy for you. I used my wait time for "training" (not that I didn't worry, too). I always liked to exercise, but having a surgery date gave me more incentive. If pain limits you, maybe you can find a water aerobics class. Your surgery sounds exactly like what I had-T4-sacrum, 2 cages, & the reach around approach to get to the anterior side of the spine. I believe that Dr. Lenke is teaching that method to other surgeons.
                            Karen

                            Surgery-Jan. 5, 2011-Dr. Lenke
                            Fusion T-4-sacrum-2 cages/5 osteotomies
                            70 degree thoracolumbar corrected to 25
                            Rib Hump-GONE!
                            Age-60 at the time of surgery
                            Now 66
                            Avid Golfer & Tap Dancer
                            Retired Kdgn. Teacher

                            See photobucket link for:
                            Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
                            Before and After Picture of back 1/7/11
                            tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
                            http://s1119.photobucket.com/albums/k630/pottoff2/

                            Comment


                            • #15
                              What a relief! You've been through a lot and were overdue for some good news. I am so glad you are finally on the right track and in the care of one of the great ones. We are talking about the rest of your life, here! And I would sure feel better with a doc who feels that the surgery is only a 1.5 for him, rather than with a surgeon who considers it difficult. Congrats!
                              Jenee'-52
                              Bend, Oregon

                              Braced 3 years in high school
                              Lumbar 70'+ Thoracic 70'+
                              I had 3" shrinkage in 6 months...

                              Surgery Jan 10, 2011
                              9 hours
                              T3 to S1 with pelvic fixation
                              Both curves now 35'

                              Possible revison for Flatback Syndrome
                              Non-fusion
                              Loose/broken hardware-awaiting CT results

                              Here is the link to my before and after pics..
                              http://www.scoliosis.org/forum/showt......&highlight=

                              Comment

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