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Thread: decisions, decisions and different opinions

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  1. #1
    Join Date
    May 2010
    Indianapolis area

    Question Facing Surgery Decision - need advice, please!

    Hello all,

    I am new to the Forum and would love to have feedback from those of you who have more experience with this. I apologize in advance for the lengthy question/explanation.

    My regular doctor advised surgery several months ago due to significant progression of my curve(s) in adulthood. I am 38 years old with a 67* thoracolumbar structural curve with significant rotation and a 49* thoracic compensatory curve. This has progressed from 55* at age 33 and 33 degrees at age 22. I am not in much pain, just your basic fatigue at the end of the day or after standing too long.

    I finally said "uncle" and decided I would have the surgery to prevent future complications, which were explained to me as progressive deformity, potential organ failure (kidneys and gastrointestinal since mine is a lower curve) and increasing lower back pain and disc instability.

    As part of the process I got a second opinion from a doc who says actually he would wait and allow my curve to progress further. Since I am not in signif. pain and I don't face cardiopulmonary issues, there is no harm in delaying, according to second opinion. Also both docs said because of the need to fuse to L4 or L5 I am at significant risk for lower back pain after surgery as well as long term disc issues.

    This is a good time for me to have surgery if I'm going to have it because I still have help (my mom, age 67 and in good health) and my kids are 4 and 7, so not too much carrying. I worry that if I put it off I won't have someone to help me and may even be taking care of others (in-laws are elderly). Plus right now I'm a stay-at-home mom and in a few years I might go back to work.

    On the other hand doc #2 says there is a small chance I will never need surgery. So obvioulsy I don't want to go through this if I don't have to.

    How do you make these decisions? And what's up with doctors disagreeing so much? What is the real risk for someone with a lower curve? I am getting conflicting information on the organ squeeze issue. And finally, is the compensatory curve likely to become structural and result in cardiopulmonary issues? I can take deformity but would rather address it now if it is eventually going to become life threatening! Would love any input.

    Thanks in advance!
    Last edited by Confusedmom; 05-17-2010 at 05:03 PM.
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  2. #2
    Join Date
    Feb 2010
    Hi there, I completely undersand what a difficult decision this is. I'm about 2 months post-op and wouldn't change a thing. I, like you, had very little pain or real issues with my curve, however my curve was clearly progressing with no signs of it letting up. My doc, and the doctor I got a second opinion from, said there was no huge rush, but they both agreed that surgery in the next 1-2 years was needed. For me, I made up my mind when the doc said it was time I wouldn't hesititate to get it done. My doc followed my progress for several years before saying it was time for surgery so I was confident he wasn't rushing to cut me open. Honestly, the surgery is no walk in the park but its not nearly as bad as I expected it might be.

    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

  3. #3
    Join Date
    May 2009
    hmmmm...dont understand the disc you have disc problems now? if so, i would think they would address that during surgery...?
    i need fusion T11-pelvis, and they will, if i have the surgery (minimally invasive approach) "clean out the discs and put spacers in"...
    if you dont have disc problems now, why are they predicting that you will?
    perhaps another consult with another surgeon is in order..?


  4. #4
    Join Date
    May 2009
    Adelaide, Australia
    Hi and welcome to the forum. Are these two doctors, Scoliosis surgeons? I ask because I have to wonder how two opinions could differ so much. I had three opinions - 2 spinal and 1 neuro. No.1 spinal said he didn't know where to start and No. 2 spinal and neuro agreed on the levels and that it should be done in the next 12 months. (Surgery was June 1st, 2009) The reasoning for this was because i had gone from 50 degrees in June 2008 to 58 in March 2009. Progression was roughly 1 degree per month. I had really bad pain consistently. I also had a tear at i think L4/5??? The other thing they mentioned was the possibility of me going into menopause and developing osteoporosis if i waited so much longer. It is almost 12 months since surgery and i am ever so grateful to my Doctors for giving me my life back. I suggest seeking maybe one more opinion. Help is definitely needed in the early stages and if you are looking to return to work, at least you would have had at least 12 months or more to rcover properly without the pressure of recovering quickly just so you can return to work. I wish you well in your decision making and if you have any further questions, please ask. The members on this forum are awesome and i'm sure that with a little bit of evveryones personal experience, it may help ease your mind. Have a nice day
    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

  5. #5
    Join Date
    Feb 2010
    I'm also interested to know if you saw scoliosis specialists? I think if it were me, with such differing opinions, I would seek another opinion, and definitely from a scoliosis expert!
    Lynette - 44 years old.

    Pre-surgery thoracic 55 degrees
    Pre-surgery lumbar 85 degrees

    Post-surgery thoracic 19 degrees
    Post-surgery lumbar 27 degrees

    Surgery April 1st 2010.

    Posterior spinal fusion from T9 to sacrum.
    Dr. Cronen at University Community Hospital - Tampa, FL.

  6. #6
    Join Date
    Feb 2010
    Reading, PA
    I agree with others on getting another opinion, and with a scoliosis surgeon. My first two surgeons had conflicting opinions and the second surgeon actually requested for me to seek a third opinion. He literally said it would be a "tie breaker". However, my third opinion didn't necessarily match either of the first two. I chose to go with my lucky "third times the charm" opinion. I'm scheduled for surgery on Aug. 5th.

    It's not easy making a decision and no one can make it for you. The reasons I decided to do the surgery now are very close to some things you mentioned. My daughter, now 3, is potty trained and doesn't need to be carried anymore. Right now I can't have another baby until my daughter goes to school so it's a good time for me. Plus, I have support from family. Rationally these were very good points in my mind, but what tipped the scale for me was this knowing feeling inside that this is what I was supposed to do.

    Just as a side note, my second opinion said he would have to fuse me from T4 to L5. My surgeon (third opinion) will be fusing me from T1 to L1.
    Tiffany K
    I'm not short, I'm fun size!

    29 years old
    4'11", never braced
    Pre-surgery, 52 T6 to T12, 35 T12 to L4
    T1-L2, Posterior 8/5/2010, gained 1"

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