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  • Pain meds vs surgery

    I am currently scheduled for surgery with Dr. Lenke in February 2010. I have double major scoliosis with kyhosis--both thoracic and lumbar curves are in the 55-60 degree range. Most of the pain is in my upper back where the junction of the two curves twist. I do have significant degeneration in the curves as well as stenosis and arthritis. The fusion would be from T3-L3. I am getting quite apprehensive about the surgery.

    If I take Lyrica and Flexeril religiously around the clock I can keep pretty much out of pain. If I try to hike or do more intense workouts (or anything upper body)--or go crazy cleaning the house I have some breakthrough pain. I am a busy mom (37) with 4 kids. I don't do any extreme sports--so this surgery won't change my life in that way. I just wonder if I should wait for the pain to be worse--or uncontrolled by meds before I undergo surgery.

    Any thoughts from those of you that had to make the decision would be most appreciated. Thank you!

  • #2
    Hi Jen...

    That's a really excellent question.

    The surgery is a big procedure and has a lot of potential complications. If you can function normally if you take pain medication, it's at least worth a consideration. The downsides to not having the surgery are 1) potential liver damage, 2) potential for having to take even more medication in the future, and 3) the potential that you'll eventually have to have surgery anyway. With that said, I don't think there's too much downside to waiting 5-10 years if you think you'll be better able to handle the surgery then.

    I have a quiz on my website to help patients think about the pros and cons of having the surgery vs. not having the surgery, or having the surgery now vs. later. You can find it here:

    http://www.scoliosislinks.com/ShouldYouHaveSurgery.htm

    Good luck with your decision.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

    Comment


    • #3
      Thank you Linda

      Thank you Linda for the kind reply. I look forward to going over the questions.

      Something else that has bothered me has been what different surgeons have said.
      A doctor in Salt Lake told me a year ago that I would likely need surgery in two to three years--so what if I move it up a year or two while I have really good insurance and a chance for Dr. Lenke to do the surgery?

      A doctor in Vermont told me it wasn't a priority to have it ASAP--but not to wait too long. When doctors say this are they basically saying to not let it get so bad??--as the surgery will be more difficult and harder to reach correction?

      Making this choice just feels like a complicated multiple choice test! Being a nurse I know that emergency gallbladder surgery is a no brainer. This is the toughest test I've even taken in my life!

      Thanks for all of your support out there!

      Comment


      • #4
        Hi Jen...

        If you've already made up your mind that you're going to have surgery, then sooner is usually better than later, but I don't think there's much significance between now vs. 1 year from now (or even 2-3 years). If you have everything (e.g., insurance, help, etc.) in place now, then I don't see a lot of reason to wait.

        Regards,
        Linda
        Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
        ---------------------------------------------------------------------------------------------------------------------------------------------------
        Surgery 2/10/93 A/P fusion T4-L3
        Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

        Comment


        • #5
          Originally posted by jenparker View Post
          Thank you Linda for the kind reply. I look forward to going over the questions.

          Something else that has bothered me has been what different surgeons have said.
          A doctor in Salt Lake told me a year ago that I would likely need surgery in two to three years--so what if I move it up a year or two while I have really good insurance and a chance for Dr. Lenke to do the surgery?

          A doctor in Vermont told me it wasn't a priority to have it ASAP--but not to wait too long. When doctors say this are they basically saying to not let it get so bad??--as the surgery will be more difficult and harder to reach correction?

          Making this choice just feels like a complicated multiple choice test! Being a nurse I know that emergency gallbladder surgery is a no brainer. This is the toughest test I've even taken in my life!

          Thanks for all of your support out there!
          HI Jen,

          My Dr. told me that I could have waited as much as 5 years, but I went ahead and had it last October because we had really good insurance that was ending May 09. I'm glad I did it, espeically seeing what our new insurance is now...I would have paid much more out of pocket.

          Good luck with your decision.
          __________________________________________
          Debbe - 50 yrs old

          Milwalkee Brace 1976 - 79
          Told by Dr. my curve would never progress

          Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
          Pre-Surgury Thorasic: 66 degrees
          Pre-Surgery Lumbar: 66 degrees

          Post-Surgery Thorasic: 34 degrees
          Post-Surgery Lumbar: 22 degrees

          Comment


          • #6
            Hello

            After scheduling surgery, I kept having major doubts too. Mostly because I didn't have much pain unless, like you said, I did something extreme like cleaning or standing too long in one place. I was mostly just uncomfortable. I never took pain meds. My doctor explained to me that scoliosis surgery is generally NOT done for pain because they can't guarantee that the pain will be lessened. The surgery is actually done to HALT the progression of the curves prevent heart and lung issues and further deformity later on.

            Yes, surgery is a huge decision, but so is deciding to take pain meds for the rest of your life. What effect will that have on your body?

            Sometimes I wonder if pain meds make people less careful about protecting their backs in day-to-day activities, because it MASKS the pain that you would feel otherwise. You don't always know when push too hard and cross the threshold for pain when you're on pain meds.

            My doctor also explained that "big curves tend to get bigger" over time. I would expect that stenosis, degeneration, and arthritis to worsen over time as well.

            Waiting for your pain to get worse is like waiting for your back to get worse. If your back gets worse, it becomes more difficult to operate on, the degree of correction might not be as great, and the healing process after surgery may be more difficult.

            Anyway, I'm just a 24 year old kid who decided to get the surgery after months of what ifs, doubts, fears. I am 17 days post-op and feel like I chose the right path!

            The decision is the hardest part. But don't listen to me! Get more opinions if you haven't already (ortho, neuro, and alternative). That always helps.

            I'm reminded of that Jewel song that says "follow your heart. your intuition. it will lead you in the right direction."

            Best wishes,
            m i r a h

            24 years old

            Pre-op Thoracic Curve 53 degrees (dextroconvex)
            Pre-op Lumbar Curve: 33-37 degrees

            Surgery: August 14, 2009
            Posterior Spinal Fusion from T3-T11

            Surgeon: David M. Montgomery, MD
            William Beaumont Hospital, Royal Oak MI

            Post-op Thoracic Curve: 16 degrees
            Post-op Lumbar: "non-structural and will correct itself over time"

            Comment


            • #7
              Hi Jen,

              Yes, it's a very tough decision. I agonized for a couple of years before I finally took the plunge, and I lived to tell the story...

              As far as severe curves being more difficult to correct, it all really depends on how flexible you are, which is determined from bending x-rays. I had a severe curve and I was 52 when I had surgery but I turned out to be extremely flexible and so got a fantastic correction -- go figure. Recovery wasn't fun and might have been prolonged because of my age, but I'm doing really well now.

              Best wishes to you.
              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

              Comment


              • #8
                4 kids. I think you should start with that in making your decision. I delayed my surgery almost 5 years because my 2 were too young to be responsible for themselves and be truly helpful to me in my recovery. They are now 14 and almost 12. The time was right for me because of their age, plus better insurance now than I've had pretty much ever, and the opportunity to take a month or 2 off work without worries. This is a big surgery and the recovery is hard. I've been blessed with a good recovery, but not everyone is so quick to heal. Weigh everything and be sure it's the right time. Waiting 5 years increassed my pain, sure, but I know now was the right time for me. Will waiting a couple years make things easier or harder for you and your family?
                Sandy

                Thoracic curve was 55 degrees, now 30
                Lumbar curve was 68 degrees, now 26
                Rib rotation was 17 degrees, now 0
                Degenerated discs and sacral arthritic spurs, plus significant spondylosis
                Fused 8/13/09 at age 43 from T-9 to pelvis with iliac screws anchoring hardware to the pelvis, plus osteomies by Drs. Anthony Moreno and Geoff Cronen, Tampa, FL

                Comment


                • #9
                  Hi Jen,

                  I also have 4 kids and how we all would cope while i was outta action was a major worry, I was very lucky and we qualified for a Nanny for 50 hrs per week for 13 weeks. She was a god send. I dont know how old your children are, (mine are 6, 4, twin 3yo's) but you will need support during the first 3 months atleast I would be thinking. I also had the help of my Mother and Mother-in-law and husband all taking time off to help us.
                  I'm 15 weeks post op now and the vertigo which started at 6 weeks has stopped and i'm almost off all my pain meds...wooohooo!!

                  The reason why i'm posting is also that i found from Feb 2009 to operation on May 22nd I went down hill pretty rapidly. My curve definatley got worse, as did the pain and the week before the op i was shorter than my big sister who i have always towered over. In the end i could not wait for the operation as it was like the light at the end of a tunnel.

                  The first couple days post op are hell..but its surprisigly how quickly you improve and as others have said each day / week you see improvements.

                  Goodluck with you descision.
                  Rhonda (kaizan)
                  40
                  diagnosed aged 12, boston brace 12 months
                  curve 69 degree T12 to L4.
                  Posterior fusion T4 to L3? with Post/Ant rods. 22 May 09:

                  Comment


                  • #10
                    i think the worry is progression of the curve(s)...mine has progressed a great deal & is now doing so more rapidly!

                    i have tremendous pain, even when doing nothing! but a surgeon i saw today (just in passing while my husband had an appt) said i wont be pain free after surgery, but would have less pain...that gave me pause!! i was hoping for pain free if/when i have the surgery!

                    progression is a big problem...i never thought my curves would get to this point! also, it has allowed for degeneration of discs & arthritis..& spinal stenosis..i think the scoli weakens everything in the back, & makes it easier for other bad things to happen to our spines...but that is just my theory...

                    best of luck with your decision
                    jess

                    Comment


                    • #11
                      Hi Jess...

                      While I think we all hope to be out of pain from surgery, it's not terribly realistic. With that said, I know a lot of people who are 100% pain free after scoliosis surgery.

                      Regards,
                      Linda
                      Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                      ---------------------------------------------------------------------------------------------------------------------------------------------------
                      Surgery 2/10/93 A/P fusion T4-L3
                      Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                      Comment


                      • #12
                        Jess,

                        The pain I had prior to my surgery is all gone as a result of getting my spine stabilized and my rib cage lifted off my pelvis. I hate to think how much worse I would have gotten if I decided against surgery. And there are quite a few members here who were surgically treated in their 50s and 60s who had excellent outcomes. Chris

                        Comment


                        • #13
                          thanks for the replies...i keep trying to imagine what my results would be...which i guess is an impossible task...

                          i am glad you & others have had good results
                          jess

                          Comment


                          • #14
                            Originally posted by jrnyc View Post
                            i think the worry is progression of the curve(s)...mine has progressed a great deal & is now doing so more rapidly!

                            i have tremendous pain, even when doing nothing! but a surgeon i saw today (just in passing while my husband had an appt) said i wont be pain free after surgery, but would have less pain...that gave me pause!! i was hoping for pain free if/when i have the surgery!

                            jess
                            Hi Jess,

                            I don't know anything about progression, since I was diagnosed way to late for that, but I do know that the longer you wait, the greater chance you will have for pain post surgery. When those nerves get pinched, the stenosis may or may not be causing permanent nerve damage. As you know, I still have pain issues, but nothing like before surgery. It is annoying, but not debilitating, so knowing what I know now, I still would go for the surgery in a heartbeat. Also, the pain that I get is happening less and less often, so the nerves are really trying to heal themselves. The only medication I take is gabapentin. Don't wait too long.

                            Sally
                            Diagnosed with severe lumbar scoliosis at age 65.
                            Posterior Fusion L2-S1 on 12/4/2007. age 67
                            Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
                            Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
                            New England Baptist Hospital, Boston, MA
                            Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

                            "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

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