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  • Flexibility

    Hi everyone. I’ve never submitted a post but I don’t feel new because I’ve been reading some of your comments for a few weeks now.

    Brief intro. I’m 26 (w/no children). I have a 58 degree thoracolumbar curve. It’s somewhat genetic since my mom also has scoliosis. She has very big curve but she’s not in daily pain - nothing that would require therapy or pills. She just can’t stand for too long without sitting to rest her hips/back (so no strolling the mall for 4 hours without a break ). This may mean I have some insight into how I’ll look and feel 30yrs from now. Still doesn’t help with a decision around surgery because I’m debating this as either not having surgery and facing occasional pain like mom (and of course disfigurement) or trying to fix the situation but exposing myself to unknown issues (broken rods, repeat surgeries, early arthritis, etc.). And yes, Dr Boachie recommends surgery…but on my own time so I’ll meet with him again next Jan.

    Here’s my question for the group. How flexible are you after the surgery? Can you still do yoga, pilates, curl into a ball, dance etc? Or is the fused area completely stiff? I was under the impression that I’d still be generally flexible (especially since I’d only be fused to L1- can’t recall the starting point) but I recently read something that suggested otherwise so I’d appreciate hearing about your experiences in this area.

    Thanks
    Rox

  • #2
    I can't do yoga, can dance(not right now since I'm 3 months post op revision surgery for a broken rod and non union), but not at the same level I could dance before b/c I can't bend backwards too much, and I'm much more stiff than before surgery. I was in pain before surgery but could still bend a LOT. I miss some of that flexibility, like driving those really low sportcars- can't do that anymore, too painful.

    All in all it depends on how low you will be fused(you said L1), I'm fused down to L2. Also, it depends what flexible means to you, b/c if it means being able to bend or able to bend a lot backwards(for example); is two different things.
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

    Comment


    • #3
      Rox
      My 13 year old daughter had surgery with Dr. Boachie. Shes 1 year post-op on march 30 and had the same curve on top. He fused her from t-4 to l-1 and is doing great. I realize she is a lot younger than you but she started taken dance classes again in oct 2005. She takes ballet jazz and hip hop is in marching band just did the st pattys day parade in nyc. Shes never done yoga. She does some pilates in Pt and she can roll into a ball. She was flexible before surgery and is still flexible. She is still in pt twice a week because of the 2nd curve she has and is wearing a brace.
      Hope this helps
      Dr. Boachie is a wonderful surgeon
      Theresa
      THERESA

      Comment


      • #4
        Dear Rox,
        I am fused from T-3 to L-3. I had my surgery many years ago and am now 53 years old. I can touch the floor with my fingertips without bending my knees. What I can't do is bend backwards. Picture an ice skater doing a layback spin; this is not possible after surgery. I have found that I am able to do many of the machines and exercises at the gym, however yoga is unsatisfying for me, because so many of the positions require you to bend backwards. With all of the exercises I am able to do to maintain abdominal strength, improve balance and strengthen the non-fused parts of my body, I do not feel particularly restricted. If you have specific questions about certain activities, please feel free to ask.
        Shelley

        Comment


        • #5
          What would a fusion from T1 to L2 feel like. Anyone with experience or know someone in that situation.

          Ive got a double major curve and I am somewhat scared about the impact of a fusion this long.

          Comment


          • #6
            Hi RD...

            There is actually relatively little flexibility in the thoracic spine, so fusion in that area won't be as restrictive as fusion into the lumbar spine. Hopefully, someone with those specific vertebrae fused will post what it's like. You might also want to send a message to user scoliosis-mom, whose daughter was fused T1-L2.

            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


            • #7
              Thanks

              I'd like to thank everyone who replied. Work can be a bit crazy so sometimes I don't log on for a while but I appreciate knowing that this forum is always here. I don't think I do much bending over backwards so it may be something I'm willing to give up. Theresa – I’m surprised that Nicole can roll into a ball. That’s really positive…not that my case will be the same but good to know.

              I have three other questions.

              (i) For those who can’t move in certain positions. Do you automatically remember not to move in a certain way or do you start doing something and then you feel a bit of pain and remember that you shouldn’t do that?

              (ii) Separate question from the flexibility matter. Does anyone actually feel the rods and screws along their spine?

              (iii) A lot of you don't seem to be in immediate pain. Have you elected to do the surgery because you expect (more) pain in the future?

              Comment


              • #8
                1) I try to remember not to twist or bend, but it gives me pain anyways so it's engraved in my memory anyways(especially now that I had revision not too long ago). I bend with my knees, as it is recommended for everyone-with or without back problems.

                2) I didn't feel the rods for years, then sometimes on and off, and now feel certain screws more times than not. It gets swollen with the humidity and certain movements, or just on its own.

                3) Not sure what you mean by the last question, but I have different pains now that I had surgery. Less of the curve, more of hardware and in the unfused vertebreas(stiffness).
                35 y/old female from Montreal, Canada
                Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
                Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
                Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
                Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

                Comment


                • #9
                  Clariification

                  Sweetness,

                  I see you didn't understand my last question so others may be confused as well. To clarify, I was trying to figure out your (everyone on the blog) deciding factor for having the surgery if you aren't in any immediate pain.....For eg: At this point I really don't have much pain. The only real reason for considering surgery now would be (i) to avoid future pain and (ii) cosmetic purposes.

                  Rox

                  Comment


                  • #10
                    Hi Rox...

                    A risk of curve progression, which could lead to future pain, or further disfigurement, might also be a reason. There might be other factors as well (loss of function, potential loss of insurance benefits in the future, etc.) I have a little quiz on my website that might help you:

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

                    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


                    • #11
                      Rox,
                      I'm 46 & I would never just have a surgery like this for cosmetic reasons---no way! I could live with my deformity. My pain comes & goes mostly in the evening. My real concerns are my insides--where my organs are. I've had too many signs to ignore. In my case, it's the discomfort & tightness of my mid-section after most meals & I truly think my intestines, stomach are impacted by these curves. We all slow down a bit with age, but I sometimes feel like I'm way to young to feel this old!!! Ly
                      surg in Aug.
                      60 lumbar/60 thor/95 thorolumbar & 80 kyphosis....need I say more..
                      http://lynnebackattack.blogspot.com
                      ps. Cosmetically speaking, if I'm better after surgery that's a plus!
                      Last edited by lelc2002@yahoo; 04-11-2006, 05:32 PM.

                      Comment


                      • #12
                        I had my surgery in February from T-3 to sacrum. Right now my movements are very limited as I'm in the brace all the time except while sleeping. I do have flex issues. I cannot bend over to get pants or shoes on but I'm hoping in time that I will be able to do all of this stuff on my own again but right now I'm not rushing it.

                        Pain was my main reason for surgery. I could have dealt with the rib hump for the rest of my life if I had not been in pain.
                        It took me almost 5 years to find a surgeon who would do the surgery I needed which was crazy. (summerfields, I promise I will rewrite my story on here soon)


                        (i) For those who can’t move in certain positions. Do you automatically remember not to move in a certain way or do you start doing something and then you feel a bit of pain and remember that you shouldn’t do that?

                        (ii) Separate question from the flexibility matter. Does anyone actually feel the rods and screws along their spine?

                        (iii) A lot of you don't seem to be in immediate pain. Have you elected to do the surgery because you expect (more) pain in the future?
                        (i)I can't move in bad positions because I'm in the brace but at night while I am sleeping, I do twist a lot. I know this because I wake up stiff or actually feeling like I pulled wrong.

                        (ii)I can't feel the rods or screws but my sons like to rub them and show my scar off to friends and let them feel it. It doesn't bother me as most of the nerves in my back are still "off" due to surgery.

                        (iii)Like I said, I had the surgery because I was in intense pain 24/7. I was also told I was losing my ability to walk and might have even had to have my left leg removed due to severe nerve damage and other issues.
                        36 year old single mom of teens ages 14 & 15.
                        Anterior/posterior spinal fusion on February 9th & 16th 2006 with Dr. Anthony Moreno who now has his own practice.
                        Fused from T-3 to S-1 (sacrum)
                        Curve pre-op = 70 degrees
                        Curve post op = 20 degrees
                        No pain anymore!!
                        Google is your friend

                        I am not a doctor and will never give medical advice. I will support and answer questions from personal experience only.

                        Comment


                        • #13
                          Rox,

                          I would be interested in hearing more about your mother's scoliosis since I'm probably around her age. I'm 56 with a 75 deg. lumbar curve and would require anterior/posterior fusion to the sacrum. I'm not actually in pain...it's more discomfort. I do experience some occasional arthritic flare-ups, but nothing major. However, I do notice little things (like I can no longer carry a shoulder bag over my shoulder for any length of time) so I opt for handbags that I can just loop over my arm. Has your mom ever considered surgery at a doctor's recommendation? Has she even been examined by an orthopedic surgeon who treats adult scoliosis?

                          For Katblack:
                          Wow...that is scary! To think that scoliosis could actually lead to loss of a limb due to severe nerve damage. That's the first time I'm hearing this. Sending you positive thoughts for a speedy recovery.

                          Chris

                          Comment


                          • #14
                            Tasha

                            ShelleyI am 34 and just had surgery 6 weeks ago today. I was fused T3-T10 and have been pretty down regarding how I will be when this is all done. I am very active, have 2 small children, snow ski and ride my bike. I asked my physician if I would be able to snow ski again and he said he wasn't going to tell me I couldn't but it was up to me. I even fall off of my bike sometimes so does that mean that I'm going to have a fear of falling for the rest of my life? I kinda wish I hadn't done this...My curve was 56 in the upper thoracic area and while I did have alot of pain if I bent over wrong I did it mostly to prevent any further curvature. Please give me some positive information as I am going nuts!!
                            Originally posted by shelley
                            Dear Rox,
                            I am fused from T-3 to L-3. I had my surgery many years ago and am now 53 years old. I can touch the floor with my fingertips without bending my knees. What I can't do is bend backwards. Picture an ice skater doing a layback spin; this is not possible after surgery. I have found that I am able to do many of the machines and exercises at the gym, however yoga is unsatisfying for me, because so many of the positions require you to bend backwards. With all of the exercises I am able to do to maintain abdominal strength, improve balance and strengthen the non-fused parts of my body, I do not feel particularly restricted. If you have specific questions about certain activities, please feel free to ask.
                            Shelley

                            Comment


                            • #15
                              Chris,
                              My case was extreme and that is part of the reason it took me 5 years to find a surgeon.
                              Nerve damage, severe nerve segmentation anomalies, severed nerves, and a whole bunch of other problems.
                              I was told to stop working in Dec.2002, I was standing on my legs and walking all day long. I still hadn't found a surgeon so I kept working. Next big time ortho and big time surgical let down told me in 2003, that if I kept on the way I was and the pressure was not removed from the nerves into, and vessels into my left leg I would lose it.

                              My leg would go completely numb, turn purple, lose all feeling not even that numbness tingle.
                              It was frightening and this past year before surgery, if I needed to go somewhere I took rides because if I had to walk, I knew I could make it from point a to point b but I wasn't so sure about getting back because my leg would be so purple and have no feeling in it.
                              My surgery has helped tremendously. Nerves are now re-routed into that leg and left hip and left torso.
                              It feels kinda funny but at least I'm feeling.
                              36 year old single mom of teens ages 14 & 15.
                              Anterior/posterior spinal fusion on February 9th & 16th 2006 with Dr. Anthony Moreno who now has his own practice.
                              Fused from T-3 to S-1 (sacrum)
                              Curve pre-op = 70 degrees
                              Curve post op = 20 degrees
                              No pain anymore!!
                              Google is your friend

                              I am not a doctor and will never give medical advice. I will support and answer questions from personal experience only.

                              Comment

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