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Thread: Set the date!

  1. #1
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    974

    Set the date!

    Hi All,
    Just wanted to let everyone know I set the date for surgery with Dr. Lenke. He has openings now starting in January, but I am waiting until March next year because it's better for my husband's work schedule. Plus I am hoping to walk outside some during recovery.

    Anyway, I just wanted to thank you all for the support I've gotten from you over the past year--especially those of you I've been able to meet and PM. It really has made all the difference in making this decision and being at peace with it.

    So, big day for me: I also got to meet the lovely Golfnut (Karen)! We coincidentally had back-to-back (no pun intended) appointments in St. Louis. So great to put a face with a name and see another person doing so well after surgery!!

    On the negative side, my curve has gotten crazy out of control--measured 84 degrees today, up from 68 last summer!! However, Dr. Lenke put me as a 3-4 on a scale of 1 to 10 for the surgeries he does. So that's good.

    Well, now it's on to working out, eating right and trying to get organized. Thanks again to everyone for helping me make ***THE*** decision. (Now, just help me stick to it!)

    Thanks,
    Evelyn
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  2. #2
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    I think that's great that you have a whole year to get prepared for your surgery and yourself healthy and in the best shape possible.
    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

  3. #3
    Join Date
    Mar 2009
    Location
    Carmel/Indianapolis
    Posts
    246
    Hi Evelyn - sounds like everything went well! Glad you set the date. We should get together again!

    Lisa
    Age 56
    Wore a Milwaukee Brace for 3 years in hs
    Fused L4-S1 for high grade spondylolisthesis Jan '09 in Indy
    Thoracic 68
    Surgery Aug 31, 2010 T3 to L1
    Dr Bridwell St Louis
    http://www.scoliosis.org/forum/attac...1&d=1289881696

  4. #4
    Join Date
    Aug 2009
    Posts
    1,164
    Glad to hear you're on the schedule (and that you're a comparatively easy case). Did he have any ideas on why he thought you had the big progression?

  5. #5
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Evelyn--
    Glad you were able to get a date for surgery that works for you and husband. That big decision is a first step and it must feel good to have that part done. Good luck in your preparations! 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.

  6. #6
    Join Date
    May 2009
    Posts
    3,745
    good luck, Ev!

    how large will your fusion be...?
    sounds like your curve has increased at an amazing rate!

    i think you are smart to have the surgery when the weather will be getting better!

    jess

  7. #7
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707

    So nice to meet you!

    Evelyn,
    I was so happy to meet you today. I wish we could have talked a little longer. I know you will be happy with your decision for surgery and your choice of surgeons. Dr. Lenke is amazing. Please email me or call if you want to talk any time! I'm going to try to post my before and after pictures.
    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/

  8. #8
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    Congratulations Evelyn, on taking this next step. It must have been good to hear your surgery will not be one of Dr. Lenke's more difficult ones despite your large curve. You'll do great!
    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

  9. #9
    Join Date
    Mar 2010
    Posts
    2,764
    Hello, Evelyn. Wow, you must be nervous and excited to get this over with. Did Dr. Lenke give you any idea why your curve started progressing so rapidly. This makes me nervous, as my curve started progressing rapidly at about your age as well, although mine is a much smaller curve. I'm due to go back for a recheck and am nervous. Are they going to monitor you between now and surgery date because of the rapid progression and will they move your date up if it does? Sorry for so many questions. I'm really hoping the best for you. Congratulations on your decision.

  10. #10
    Join Date
    Feb 2010
    Location
    Ohio
    Posts
    200
    Congratulations, Evelyn! Maybe our paths will cross someday in St. Louis, or in Indianapolis as I'm not that far away. I had a lot of time to prepare also and, for me, it was good. I used the time to educate myself and to get into shape (sound like you are planning to do the same). With such a rapid progression and a large curve, I think you are making a wise choice.
    Kathy
    46 yrs at surgery, now 50
    71 degree thoracolumbar curve corrected to 34 degrees
    8/2/2010 surgery with Dr. Lenke

    posterior T9 to sacrum with pelvic fixation

    4 osteotomies and 1 cage
    http://s1066.photobucket.com/albums/...athK_08022010/

  11. #11
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416
    Evelyn,
    I know this is a major decision for you and it must feel like a weight off for you to finally have a date set. I am sorry to hear that your curve has progressed so rapidly. Do you have more pain associated with that progression? I would love to get together again with you and Lisa...I will be thinking of you as you go through this next year ;-)
    May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

    March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

    January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

  12. #12
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    974
    Hi all,

    Thanks for the well-wishes! To answer a couple questions, I really am not totally believing the progression as it's described. I was measured in Indianapolis at 68 degrees last June. Then I went to St. Louis 10 days later (also last June), and they measured me at 75, standing a different way (arms crossed at shoulders vs. at my sides). Then this March, they measured me yet a third way in St. Louis, with elbows parallel to shoulders and forearms straight up. Dr. Lenke's resident read the film at 78 degrees, and then Lenke came in and crossed that out and wrote 84. So, I think the 68 degrees in Indy was low (it had been at that level a couple of years) and the 84 is high. Even so, there is obvious progression, but maybe not at the alarming rate the base numbers would suggest. Dr. Lenke did remark that the rate of progression was somewhat "alarming" for someone my age, but he was looking at the total span of time from 2005 (my first available xray at 55 degrees) to now. He did not seem to think he needed to monitor me in the next year, but suggested that I not wait 5 or 10 years for surgery. I think that even if it progresses another 10-12 degrees in the next year, that is not a big difference for him in the type of surgery he has to do. It was already going to be T4 or 5 to sacrum, so it's not going to make a huge difference in what they fuse, either, though it could go a little higher, I guess. So, long story short, I don't think the progression really matters at this point, since surgery is imminent. As for a reason for the fast progression--I have a very rare metabolic disorder that affects my elastic tissues, and he thinks that is causing the fast progression. It's not Marfans, but think something like that. Good news is that it hasn't affected me in any other way except a weird patch of skin on my neck that led to the diagnosis. Okay, hope that answers some questions. I'm sure I'll be back with my own soon!

    ,
    Evelyn
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  13. #13
    Join Date
    May 2009
    Posts
    3,745
    hi Ev
    i have never been measured for scoli any other way than with my arms down at my sides...by any surgeon!
    i think surgeons...and all doctors...should agree on a method of measurement!
    because...i bet standing differently can really throw the numbers off!
    makes sense that you take them with a grain of salt!
    still, it sounds like the progression is happening...

    it is great that you have decided...and you are relatively young, so that will be a benefit for healing!

    i think you should consider changing your nickname, though...you don't sound one bit confused anymore!

    jess

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