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Thread: what to do...what to do

  1. #1
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    Lightbulb what to do...what to do

    Hi there. I've posted before but under a different name (cmkito). So I have a surgery date for the end of June and I'm still debating whether or not I can go through with it!
    I've got an S Thoracic curve with a 40 degree and 47 degree curves. I'm not in too much pain to deal with, but I am definitely uncomfortable all the time. I'm 30, married w/ no kids, and in pretty good shape.

    I went to the spinal fusion class at New England Baptist in Boston and it was informative. They said my curve could progress after menopause. I would be having the surgery with Dr. Rand and he is great. He would fuse T1-T11 anterior with the hook method. I'm just scared out of my mind that I might make things worse than they are now. But on the other hand...I really hate how it looks and are bothered by the pain....and feel like if I'm going to do it, I should do it while I'm younger.

    My parents are totally against my surgery but my husband is supportive of me.

    I know it's a decision I have to make, but I keep waiting for my 'aha' moment that will give me my anwer.

    Any advice is much appreciated.

    -Christina

  2. #2
    Join Date
    Jan 2011
    Posts
    197
    No advice here other than you'll have to get all the information you can and decide if it's right for you. It must be pretty twisted up if they're saying anterior?

    For me, I found out I needed surgery Dec 30 and had it done Feb 23. Mine was posterior only. I am fused T3-L4 and did it now because 1) I don't believe the surgery will change that much in the next 5 or so years, 2) I want to adopt kids and wanted to get it out of the way 3) assuming I don't get hit by a trash truck, it was imperative that I do it or die younger by suffocation when my lung crashes into my heart, and 4) I wanted it done before I started staring down the barrel of menopause (I have no idea when that is supposed to start but whatever).

    Best of luck on your decision. It's one that I couldn't make and then sit with for long. The waiting was hard but honestly, IMO it was every bit as hard as the surgery and recovery has been so far. There's no easy answer, I'm afraid.
    Female, age 38
    4 years of bracing, concluded at 42*upper/38*lower
    currently 64*upper/40*lower
    Fused T3-L4 on Feb 23 2011
    now 32*upper/18* lower

  3. #3
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    oops I meant to write posterior!

    Dr. Rand said surgery is up to me.

    tha

  4. #4
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    May 2010
    Location
    Indianapolis area
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    It seems like the key question is whether your curves are progressing. If they are not, and are stable in the 40s, you may never need surgery. You need xrays over a number of years that show an increase usually greater than 10 degrees, to rule out the margin or error of progression. Good luck with your decision!

    Evelyn
    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.

  5. #5
    Join Date
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    Quote Originally Posted by chmesh View Post
    I'm not in too much pain to deal with, but I am definitely uncomfortable all the time. I'm 30, married w/ no kids, and in pretty good shape.
    All of this could describe me too! (except my curve is different.) I've also had surgeons tell me its my choice, and I've had others tell me don't rush. I guess for me, if someone could tell me that having surgery now would definitively reduce my pain/need for revision after menopause that would make it a no-brainer. I'm sorry I don't have any advice, just a question... did Dr. Rand tell you anything about you can expect after surgery in the long term?
    1993, Age 13, 53* Right T Curve w/ Left L compensatory
    2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

    http://livingtwisted.wordpress.com/

  6. #6
    Join Date
    Jan 2006
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    near Philadelphia
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    I agree that documented progression and pain are the indicators for surgery. On the one hand, surgery can be a bit easier when you're young and have a less-severe curve; on the other hand, increasing pain and progression can be a powerful motivator for facing the surgery with less fear and more resolve.

    It can be a tough call.
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  7. #7
    Join Date
    Jan 2011
    Posts
    197
    According to the orthos I saw (other than Boachie) and the 8 that I know socially, surgeons do not consider surgery a cure for back pain associated with scoliosis. The goal of surgery is to stabilize the spine. There is about a 50% chance of reduced pain based on the journal articles my husband (he's a doctor) researched.

    To that end, my lower back pain increased from my mid-20s to my mid/late 30s such that by the time I went to the dr on Dec 30, it was because my pain was no longer managed with weekly PT, daily yoga, and full daily dosages of tramadol and celebrex (with a xanax kicker for spasms).

    Post-op, I do not have the lower back pain I had pre-op. Walking far is no longer a painful task. Granted I'm 7 weeks out but I am hopeful that eventually I will not have any back pain to deal with, once the recovery is over. When that is, I have no clue.

    I just wanted to clarify that pain may be an indicator that you need surgery, but mostly it's progression and the (in)stability of your spine that will be the deciding factor, along with whether you have respiratory distress now or they can project out based on progressive x-rays (measured by the same surgeon preferably) showing worsened curvature. There is no guarantee of pain reduction and anyone who says there is does not follow evidence-based medicine or is selling you snake oil.
    Female, age 38
    4 years of bracing, concluded at 42*upper/38*lower
    currently 64*upper/40*lower
    Fused T3-L4 on Feb 23 2011
    now 32*upper/18* lower

  8. #8
    Join Date
    May 2009
    Posts
    3,745
    EVERY SINGLE scoli surgeon i consulted with said i would be in LESS pain after surgery...much less! that includes Boachie, Anand, Lonner, Neuwirth, and a few others who shall be nameless. including one who works with Errico

    every pain management doctor i have consulted with...3 to date...said it would not change my pain....

    jess

  9. #9
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Quote Originally Posted by chmesh View Post
    Hi there. I've posted before but under a different name (cmkito). So I have a surgery date for the end of June and I'm still debating whether or not I can go through with it!
    I've got an S Thoracic curve with a 40 degree and 47 degree curves. I'm not in too much pain to deal with, but I am definitely uncomfortable all the time. I'm 30, married w/ no kids, and in pretty good shape.

    I went to the spinal fusion class at New England Baptist in Boston and it was informative. They said my curve could progress after menopause. I would be having the surgery with Dr. Rand and he is great. He would fuse T1-T11 anterior with the hook method. I'm just scared out of my mind that I might make things worse than they are now. But on the other hand...I really hate how it looks and are bothered by the pain....and feel like if I'm going to do it, I should do it while I'm younger.

    My parents are totally against my surgery but my husband is supportive of me.

    I know it's a decision I have to make, but I keep waiting for my 'aha' moment that will give me my anwer.

    Any advice is much appreciated.

    -Christina
    Hi Christina...

    You've received some excellent comments and advice from others, so I won't comment on the issue of whether or not you should have surgery.

    I did, however, want to bring up a concern about using hooks for your surgery. The next time you see Dr. Rand, I would ask him why he wants to use hooks instead of screws.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  10. #10
    Join Date
    Sep 2003
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    Quote Originally Posted by jrnyc View Post
    EVERY SINGLE scoli surgeon i consulted with said i would be in LESS pain after surgery...much less! that includes Boachie, Anand, Lonner, Neuwirth, and a few others who shall be nameless. including one who works with Errico

    every pain management doctor i have consulted with...3 to date...said it would not change my pain....

    jess
    Hi Jess...

    Did they say absolutely you'd be in less pain? My experience, with lots of different surgeons, is that they say that most patients experience some pain relief, but that there are no promises.

    As we've seen from some folks who post here, a relatively small percentage of patients have no pain relief, or even experience an increase in pain.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  11. #11
    Join Date
    Jan 2011
    Posts
    197
    Part of what turned me off with Boachie is that he quoted us an 80% chance of total pain relief. I can't quantify anything higher than 50% based on published research so I think that number was a bit of dangling carrot. I felt my surgeon was a lot more realistic in his approach. YMMV of course.
    Female, age 38
    4 years of bracing, concluded at 42*upper/38*lower
    currently 64*upper/40*lower
    Fused T3-L4 on Feb 23 2011
    now 32*upper/18* lower

  12. #12
    Join Date
    Sep 2003
    Location
    Northern California
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    Quote Originally Posted by Lilysaidwhat View Post
    Part of what turned me off with Boachie is that he quoted us an 80% chance of total pain relief. I can't quantify anything higher than 50% based on published research so I think that number was a bit of dangling carrot. I felt my surgeon was a lot more realistic in his approach. YMMV of course.
    Hi...

    It wouldn't surprise me at all if 80% of Dr. Boachie's patients got total pain relief. The 50% number that is being quoted is essentially from a meta analysis of multiple studies, so would include gifted surgeons as well as not-so-gifted surgeons.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  13. #13
    Join Date
    Oct 2010
    Location
    Bend, Oregon
    Posts
    265
    I would imagine that there are different types of "pain" that we are talking about. Some are specific, measurable pains that can be dealt with. Other pains are sometimes muscular, or just a nebulous, generalized pain. Those are hard to pinpoint, let alone "cure".
    Just in my own personal case, the majority of my pain was due to nerve impingement, spinal cord compression, and the "crushed" feeling in my torso. And some general muscle pains. When those nerves were released in surgery, there was a huge relief from pain. It is still there at times when I'm tired or have overdone it, but it is much less severe. It is not that unrelenting, 24/7 type of pain anymore. And that crushed feeling is GONE. I expect my occasional muscular backaches will continue for the rest of my life. But that is common for even a NON scoli person. No surgery is ever a guarantee. We just research the odds and hope we are on the right side of the numbers!!
    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=

  14. #14
    Join Date
    Jan 2006
    Location
    near Philadelphia
    Posts
    1,260
    The issue of pain is so interesting because it's so subjective. I don't know how anyone who had the hugely invasive anterior-release procedure (in which you're basically sliced all the way open from the side) can be totally pain-free. I have a lot of residual tightness, pulling, and soreness around my rib cage and upper abdomen which I assume is scar tissue. It's discomfort but not an "ouch" kind of pain. When I'm diligent about doing my core-building exercises the discomfort is less. And I feel a million times better in warm weather.

    On the other hand, the pain I used to have while trying to shop, cook dinner, sit on bleachers, or amble through a museum is totally gone. I can stand up, shop, or walk for hours -- something that still amazes me at times.

    So, I see it as a trade-off, and the discomfort I still have is the price I paid for a stabilized spine and a terrific cosmetic result.
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  15. #15
    Join Date
    Sep 2008
    Location
    MA
    Posts
    36
    Thanks for the wise words. I haven't had too much progression recently. I was braced in elementary school when I had a 20ish degree curve. So since then, I've progressed.

    Lisa, I'm not sure why he wants to use the hook method. I didn't think to question him. Have you heard negative things about that method?

    -Christina

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