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to have it or not????

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  • to have it or not????

    Hey everyone, it's been a while since I've written anything on here, but I have to say I check in at least once a month to get some support from you all.

    I am posting today because I am coming up to my yearly evaluation with my Scoli dr. in a few weeks, and I've had the idea of surgery on my mind a lot. I've already had 3 spinal surgeries, all just for one herniated disc at the L2-3. So the prospect of facing another surgery makes me fill kinda ill, especially since I'm at the lowest level of pain I've had since the disc herniated 3 years ago.

    BUT....my curves seem to be slowly getting worse every year. I'm at a little over 50 degrees both C&L . When I was diagnosed at 13, I was at around 42 and wore a back brace religiously at night until I stopped growing. The curves stayed at 42 the whole time I wore the brace...stopped wearing it when I stopped growing and went on with my life for about 5 years w/o going to see a scoli dr. Aside from discomfort/mild pain I didn't notice it at all. I'm not sure how long it was before I was remeasured and found out I was at over 50...

    It's not a super fast progression, but I can REALLY see a change in my shoulders over the last few years, and I feel very uncomfortable when I'm trying to go to sleep at night. No matter what position I'm laying in, I feel like I'm "caving in"...I don't know if that makes any sense, but I don't know how to explain it. I've also developed quite a strong pain along/underneath my left shoulder blade, which I've never had before. All my pain has been concentrated in my lower back until recently. If I sleep even a little funny I will wake up with very bad pain that lasts all day, to the point where it hurts if I look down or turn my head too quickly.

    Anyway, I LOVE my dr, but last time I was there (I think in April) he said he was really glad we didn't do the whole surgery, since I was having such good results from a one level fusion. BUT then he said, "But if you need the surgery in 10 years, we'll do it then..." His basic feeling is that you shouldn't have the surgery until you NEED it. But that's easy for him to say! I don't know that in 10 years I'll feel like dropping everything in my life to recover from a difficult surgery.

    blech. I just feel like it's hanging over me. My husband and I really want kids, but I'm scared of getting pregnant and having my curves get a lot worse and then having to have the surgery PLUS take care of a small child.

    Right now I'm not able to work because of my pain, and since I don't have children yet, my feeling is I'd rather just go ahead and get it over with. He said usually once the curves progress to 50+ they get worse one degree or more a year...so at that rate I'll be having the surgery when I'm 38. And that's if it doesn't get worse faster...

    For those of you who have had it, what is your take? Did you wish you had it when you were younger, or did you feel you should've waited?

    I know its a super tough recovery and I've done TONS of research on it. I just feel like there is no WIN. You wait and have it when you're older, so recovery is more difficult, and you probably have a family to take care of. Or you have it when your younger, but all the hardware causes problems...

    Do any of you get discouraged like that? Mine aren't even that bad, but I feel like it just never ends. I had no idea my scoliosis would affect so much of my life. When I was a kid, they told me it was no big deal, and it would never get worse after I stopped growing.

    I'm curious to see if the curves have progressed since my last measurements a year ago.

    Anyway, sorry this is so long. I just know you guys can relate, and it's nice to share my problems with people who REALLY know what it's like!

    Please share your advice, stories, etc. I'm ALL ears! Thanks!
    Last edited by peachrush7; 09-15-2010, 07:59 PM.
    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/

  • #2
    I feel for you.
    It's a very hard decision and a bit to juggle any way you cut it.
    We need an EXACT answer but there is no EXACT answer.
    Some of us are lucky enough to have someone/s behind them for support and some of us have everyone interrogating them "why would you even consider?!"
    I don't have an answer but I'm still here and read and search and mull over everything on this forum, you can't know to much.
    Only you can make the final decision though.
    Weigh it out and good luck my friend.
    Surgery scheduled for January 2011
    by Charles (Ted) Shuff
    http://cabellhuntington.org/services...ce/physicians/
    http://s910.photobucket.com/albums/a...dayjunk/Davis/

    "Adversity is the state in which man most easily becomes acquainted with himself, being especially free of admirers then."
    -- Samuel Johnson
    "Beer is proof that God loves us and wants us to be happy." -
    -- Benjamin Franklin

    Comment


    • #3
      I agree with Davis that there is no exact answer and that only you can make the right decision for you. However, reading your post reminded me so much of how I was thinking a year ago. The difference is that I have a child and could not think of having another child at that point because of fear of added pain. In the end I knew what I wanted to do, but finding a doctor that agreed with me... well, that was the hardest part for me. All I can I tell you is to follow your heart and do what is best for you and your family.
      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"

      http://www.facebook.com/album.php?ai...9&l=03212f3e17

      Comment


      • #4
        Well, Peachrush...here's how it went with me:

        My curves at the end of my growth were in the high 30s. They progressed very slowly, less than 1 degree per year, over a period of 30 years. Then, they took off, and now I have debilitating pain and am facing surgery in my 50s. Now, 50 may be the new 30, but if I knew then what I know now, as the saying goes, I wish like anything I had done the surgery in my 40s, when the handwriting was on the wall, the curves were more flexible, and there were no children in my life. Now I have a 3 year old granddaughter I take care of daily (as you would if you have children)and this is NOT the time I want to be losing functionality for an entire year.

        You've done the math on 1 degree per year, and it may or may not do that through your 30s. It does seem that there are a number of us who have held pretty well until mid-life, and then begun to collapse as I have done. And your curves area already bigger than mine were at your age, by a good bit. When I hear you describing the changes in your body that you feel, it's so familiar to me. I never needed x-rays to tell me what was happening; the hump on my back told me all I needed to know. And the increasing pain.

        My first experience of pain was in my mid-30s, and it was very manageable for 10 years. It's not very manageable now. And the older you get, the stiffer your curves get, and the harder it is to get good correction.

        It's not easy to be in your shoes. Just don't live in denial, because I did that, and it didn't work too well for me.

        Good luck with your decision. Maybe you will never need surgery, but I suspect your cards are on the table and you just have to decide how to play your hand.
        Last edited by Mojo's Mom; 09-17-2010, 08:04 PM.
        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


        • #5
          Peachrush, I just went into your personal profile and saw your age. I can't help but think that curves that have progressed into the 50s do not have a really great prognosis. My curves were ten degrees less than that at that age and I had no pain whatsoever. One degree per year, if you're lucky to hold at that, puts you in the 60s at 37, which is where I am at age 52. And if you have kids RIGHT NOW, you're likely to need surgery when your children are still in grade school or junior high.

          I wouldn't want to have to make the call. Scoliosis sucks!
          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


          • #6
            Hi Peachcrush and Welcome. I had surgery last year. My main reasons were because my curve was progressing at 1# per month. I had spinal injections since 2007 to keep the pain at bay until they no longer gave me any relief. I am a very active person and never want to miss out on anything that life has to offer and this was just what was happening due to the pain i was experiencing. I wanted my social life back, i wanted to be able to travel painfree and i guess most of all for me, I wanted to be able to hold and nurse our grandchild when she arrived! Peachcrush, as someone else has said on this thread, 'Follow your heart' and heed your Surgeons advice! Best wishes on your decision making journey.
            Vali
            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

            Comment


            • #7
              Hi Peachcrush,

              Well, I guess I'm you 10 years down the road! I'm 38 and have a 70ish degree thoracolumbar curve. I was at 55 degrees when I was 30. Having two kids definitely did make the pain worse during pregnancy, and my curves got a lot worse with my second pregnancy, though the docs will tell you there isn't a documented link.

              I didn't want to have surgery with very young children. From what I've seen on this forum, that is a VERY difficult situation. So I waited until my youngest was three and scheduled it. However, after reading everything on this forum that people go through, I completely chickened out and cancelled it. I am now waiting another year or two until my youngest is in school all day.

              My pain isn't too bad. Manageable. But I know what you mean about having a bad day if you sleep the wrong way. Or for me if I'm on my feet too long or lift anything heavy, then I need to lay down in the late afternoon/early evening.

              One thing: Docs have told me it is not easy to lift babies in and out of cribs with a long fusion. Also, you will need to wait for a year after surgery before becoming pregnant. They want your fusion complete before you body starts changing and bearing more weight.

              Good luck. It's not an easy decision.

              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.

              Comment


              • #8
                wow everyone!!! thank you SO much for your responses. It almost makes me want to cry to have your support and perspectives on what is such a hard situation.

                I had my appointment with my surgeon on Thursday, and it was a great consult. He answered all my questions, and listened to all of my concerns for a good hour. My measurements are now a solid 52 for both curves, so I've progressed at about 1 degree over a year and a half. Slow, but definitely a progression.

                My surgeon is VERY experienced and didn't want to encourage or discourage me from the surgery, which I really appreciated. He was very blunt about everything from how tough the surgery is, to how I may need to have some sort of adjustment surgery when I'm much older. He said there are no guarantees or perfect solutions either way and it's really up to me whether I want to have it right now, or wait until I'm either progressed to 60 degrees, or my pain progresses to the point of being debilitating. I was actually surprised he was willing to go ahead and do the surgery now, since I'm not dying of pain currently, but he seems to be one of the few who understands that this affects every day of our lives, and there is a good possibility I may have to have it in 10 years, or 20 years, or less! He's not opposed to doing it "preventatively" but he's also fine with waiting if that's what I decide.

                He did say I'm a great candidate, as I'm still young and flexible and so he'd probably get a great correction, and he also knows first hand how strong my bones are. But he said I have about 10 years of being a great candidate, so I don't need to feel rushed.

                He says that pregnancy really can affect my curves, although there is a chance they wont...so again, no guarantees! He said the hormones that our bodies produce to relax our ligaments etc to expand to make room for the baby can sometimes affect our spines. It doesn't always make a woman with scoliosis worse, but it has happened, and he's treated women who've had that happen.

                I'm going to schedule another consult and bring my husband, so he can ask all his questions too. my husband would rather wait because he (having more hope than me lol) thinks as long as there's a chance I may not need it, he'd rather not get it. We've dealt with 3 surgeries already, and it really has put our desire for children on hold for 2 years already. And if I have the surgery this year, it'll be at least another year before we can start trying.

                Anyway, thanks again. Your experiences really do help me. I think I'll have my hubby read them too! :
                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

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