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Thread: Mechanics of fusion to sacrum and flexibility

  1. #16
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    It is great to hear from Linda about talking to her clinic's patients. While the surgeons know the medical, we know the result of the surgery. I even find parts of the medical community really don't understand the results of such a long fusion. Recently I have had another surgery for my cervical. The anesthesiologist knew about my long fusions, but he asked me to wiggle onto the operating table. There is no wiggling with this fusion.
    As far as the undies go, I must step in with my left leg first. Same for pants, it must be the left first. I am sure it may be different for everyone. We learn to function but need to change things.

  2. #17
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    Linda,

    I would be happy to participate in the study as long as it does not involve going to UCSF... I don't have time for it, but will fill in any questionnaires you have.

    May be your inability to lift your legs is not related to the pelvic fixation, but it's something else? I don't have problems like that now, but may be it will happen to me later in life, who knows what the future holds.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  3. #18
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    Thanks Irina. Unfortunately, you would need to be pre-surgical, have one of the study investigators as your surgeon, and come in for an exam and x-rays at preop, 3 months, 1 year, and 2 years postop. For others who are interested, most of the spine practices that do the majority of adult scoliosis surgery are participating.

    How far can you raise your knee from a seated position? I only get about 4", and one my knee is raised I cannot bend my upper torso forward without lowering the knee.

    --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.

  4. #19
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    Quote Originally Posted by LindaRacine View Post
    Thanks Irina. Unfortunately, you would need to be pre-surgical, have one of the study investigators as your surgeon, and come in for an exam and x-rays at preop, 3 months, 1 year, and 2 years postop. For others who are interested, most of the spine practices that do the majority of adult scoliosis surgery are participating.

    How far can you raise your knee from a seated position? I only get about 4", and one my knee is raised I cannot bend my upper torso forward without lowering the knee.

    --Linda
    Just tested. If l sit on a chair and lean against a back rest, I can lift my left foot about 18 inches off the floor. A little less for my right foot. That's the distance between the floor and the heel of my foot. Don't know if it's related, but I always had very flexible joints. I did rhythmic gymnastics as a kid.
    Last edited by Irina; 12-10-2014 at 12:59 AM.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  5. #20
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    Oregon
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    I tried this also, but didn't measure like Irina did. If I'm sitting in a chair at my regular-height dining room table, I can raise my knee several inches above the top of the table. If I hold on to my knee with my hands I can pull it all the way to my chest easily. I can do this on both sides.

    I like Irina am extremely flexible naturally. I am fused T8-sacrum and can currently bend forward and touch both hands to the floor at the same time. I feel if my hamstrings were looser I could almost do this with my knees straight. I noticed my hamstrings were extremely tight after surgery, and I work regularly to keep them stretched out. I was told by a PT that my current level of flexibility in my back is almost the same as what most unfused people have naturally. I have regained a whole lot of flexibility in the last 11 months, after I passed the terror of the 2-year mark of my broken rod revision and starting trying to do more motions. So far, so good!

    One of these days I might have to see if I can do the things Ed can do in his photos. Of course, I have a few extra unfused levels compared to him.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  6. #21
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    Aug 2012
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    San Francicsco Bay Area
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    study

    Linda:

    Please do let us know if you get any answers from the surgeons about why you are so limited with lifting your legs and about the other limitations you mentioned. I'm also wondering why you lose your center of gravity when you bend forward? Is it because of the Scoliosis surgery? Please explain.

    Also, is the study specifically for people who are being fused to the sacrum?

    I still keep hearing from people that being fused to the sacrum feels like a broom handle is taped to your behind. I also hear repeatedly that how flexible you are afterwards depends on how flexible you are before. It seems to me that this is something surgeons should mention to people before the surgery. Also, in terms of this discussion, how should "flexible" be defined?

    Thanks so much,

  7. #22
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    Again, I am not fused to the sacrum but will butt in anyway. I am fused T2-L4, so 15 vertebrae. Just picture a LONG amount of your back 18-20" (?) with rods built in -- that is the word picture Linda is trying to give you with the broom handle. It doesn't bend or give at all. You cannot have any flexibility with those rods in there. Period. Even with my fusion, I only bend at the hip. So if you tape a yardstick or broom handle or something else to your back and try that out for awhile, you will get the idea of what it is like to not have the capability to maneuver the way you have always been used to. With a lot of people your sense of balance is also "off" and it is hard to correct when you start to lose it -- kind of like when someone fishtails in their vehicle and overcorrects. Anyway, just thought I'd throw that in to see if it helps any.
    66 and still heartbroken...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  8. #23
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    Hi Susan bee, that is a great description about fishtailing. I never thought about it like that but it is hard to correct your balance when you are off. Yesterday,even though I have been fused for years, I was listing to the right. I have no idea why. But I have learned to wear good shoes and work all day on keeping balanced. I recently had a fourth cervical level fused and that may be throwing me off. Just have to keep working on it. I am now fused like Melissa. Total spine.

  9. #24
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    Quote Originally Posted by Susie*Bee View Post
    kind of like when someone fishtails in their vehicle and overcorrects.
    Definitely. If I start tipping, and am not holding on, or I'm holding on with only one hand, there's no stopping me. It's especially difficult if it happens when I'm squatting.
    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. #25
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    I am fused T6 to sacrum and my right leg is a little off after the surgery. Sometimes I trip over my right foot, but I am always able to correct and balance myself. I fell only once after the surgery - I was about 2 months out and tried to put something in a trash can. I put my body weight on right leg, which was very weak at that time, and all of sudden dropped down on my knees.

    It never happened again. I am tripping over my right leg occasionally, but always balance myself. May be my doing gymnastics or yoga in the past help with that... Don't know... I would recommend yoga to anybody considering scoliosis surgery - it improves your flexibility, teaches you body awareness and calmes your nerves.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  11. #26
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    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
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    My inability to raise my foot very nigh has to be because of the surgery because I had no problems before surgery. It's minor. I wouldn't like to give the impression it's a problem. Life is good with a fused spine.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  12. #27
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    Mar 2008
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    Quote Originally Posted by Tableone View Post
    Linda has said that she can't lift her foot more than six inches off the ground. Others have said they can't wipe themselves or sit on the floor. Why is this? Does the lower spine need to bend for this?
    Yes, the lower spine at L5 needs to bed for this. I'm about to lose my L5 disc which DOES allow me to bend over, much like picture #2 in Linda's pictorial example. I can walk fairly quickly, get in and out of my car and bathtub fairly reasonably - but I can bend. When you are fused to the large hipbones in your pelvis, the only movement can come from the leg socket in the hip; as exampled in picture #3.

    Further, at present, I have been told that I can't straighten both legs at the same time without pain, squeezing my buttocks like crazy and feeling sharp pain in my waist and hips and legs because I have hip flexor issues! What? I could straighten my legs prior to surgery but not after so how in the hell can this be related to my hip flexors?? With all due respect to Dr. Gupta, I disagree. However, I also am going to ask for physical therapy NOW. I want an expert in spine surgery phys therapists to work with me on loosening up both the hip flexor and hamstring muscles. I have a book on stretching that is a common best seller that I'm going to get out and start stretching those muscles I can (without pain) before I see a phys therapist.

    Just imagine (as everyone else has said) being ONE BONE from neck to buttock, something like a tibia, for motion. All you have are your leg sockets in the hips.

    I am working on squats - fortunately my legs are strong because I've only had one disc in my back to help me move. Nevertheless, I look deformed. My ass sticks out because I am fused to L5 (where I still have motion), and I am at about a 30 degree angle to the right due to the condition of that disc and arthritic changes to my fused spine (so I need osteotomies). I am hunched forward and to the right. My legs won't straighten properly and it almost appears as if I have one leg shorter than another but it's the disc and fused spine changes that makes me look like this. One old lady (she had to be in her late 80's) flat out told me I looked like a walking question mark. OMG, even with full fusion hardships, if my head is over my hips and I am fairly straight and can walk, I'll be happy.

    Oh, that and how do I put dishes in the dishwasher - squats for that too, I expect. Then there's that $64,000 question......
    Susan
    XLIF/Posterior Surgery 6/16/08. Fused T10-L5 in CA by Dr. Michael Kropf (don't go there unless it's simple, I hear he's at Cedar's now). Very deformed, had revision w/5 PSO's, rods from T-3 to sacrum including iliac screws, all posterior, 5/23/16 with Dr. Purnendu Gupta of Chicago.


    Owner of Chachi the Chihuahua, So Cal born and bred, now a resident of 'Chicagoland' Illinois. Uh, dislike it here....thank God there was ONE excellent spine surgeon in this area.

  13. #28
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    Quote Originally Posted by Chihuahua Mama View Post
    When you are fused to the large hipbones in your pelvis, the only movement can come from the leg socket in the hip; as exampled in picture #3.
    Don't want to scare anyone. As far as I know, no one is fused to the "hipbones" (whatever they are). Fusion is typically to the sacrum, with fixation to the pelvis (ilium). There is the possibility of fusion of the S-I joints (sacrum to pelvis), but I don't think I know of anyone who has SIJ fusion in addition to a long fusion to the sacrum.

    --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.

  14. #29
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    Mar 2008
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    Quote Originally Posted by LindaRacine View Post
    Don't want to scare anyone. As far as I know, no one is fused to the "hipbones" (whatever they are). Fusion is typically to the sacrum, with fixation to the pelvis (ilium). There is the possibility of fusion of the S-I joints (sacrum to pelvis), but I don't think I know of anyone who has SIJ fusion in addition to a long fusion to the sacrum.

    --Linda
    {Without splitiing hairs} I wasn't as specific as I should have been - by hipbones I meant my fusion will be to Sacrum with iliac (pelvis) screw fixation. "Hipbones" is how I think of the placement of the iliac crest.
    Susan
    XLIF/Posterior Surgery 6/16/08. Fused T10-L5 in CA by Dr. Michael Kropf (don't go there unless it's simple, I hear he's at Cedar's now). Very deformed, had revision w/5 PSO's, rods from T-3 to sacrum including iliac screws, all posterior, 5/23/16 with Dr. Purnendu Gupta of Chicago.


    Owner of Chachi the Chihuahua, So Cal born and bred, now a resident of 'Chicagoland' Illinois. Uh, dislike it here....thank God there was ONE excellent spine surgeon in this area.

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