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  • ?'s re:lumbar scoliosis

    Hi! I've been looking in at the forums from time to time over the past couple months and I have some questions. I see that most people here seem to have double curves or thoracic curves. I have a 78 degree lumbar curve (last check was almost 2 years ago, it may be more now). I am going to see a surgeon next month- finally getting to a "point" in life where I can do something about it. (I was 23 when I was 1st diagnosed- curve was 62 degrees). I have searched the 'net for info re:adult idiopathic lumbar scoliosis and it seems to be more difficult to correct w/instrumentation. Is there anyone here that has lumbar scoliosis? Did you have surgery? If so, how was it (what did they do? what kind of instrumentation? anterior and/or posterior?) and how are you now? (do you have any advice, etc.?). What was your curve pre-/post-op? I'd like to get some firsthand feedback before I go to the Dr.- he may be able to "fix" it, but he doesn't live with it! Thanks!!

  • #2
    Gabrielle-

    I had double major curves. I was diagnosed at 16 and it got progressively worse over time. I finally couldnt take the side effects of the scoliosis- burning pain in my left hip, numb legs, breathing problems.you name it i had it..I just couldnt take it one day and saw my specialist and he set it up from there. 6 months later I was having my 1st surgery. I have 3 titanium rods with pedicle screws throughout my entire spine. I had both anterior and posterior fusion. Anterior definitely was painful but I got much better results from that surgery than the 2 posterior surgeries that followed. THe worst part about recovery from the anterior is that you have a stomach incision which is very painful and tough to move with. but once you get past the first 2 weeks its smooth sailing. I hoped that helped . Let me know if you have any other questions.

    Ali
    Alison
    Upper 98
    Lower 96
    3 surgeries Jan 02' Mar 02 & Sept 03'

    Comment


    • #3
      I will try and keep it short, I have a marked dextro conver scolisosi of the thoracolumbar spine. Spinal Stenosis, multiple levels within the lumbar spine to varying degrees, degenerative arthritic changes of the articulating facets, L3-L4,L5-S1 levels. This was and is after a spinal fusion in 1954, since that time I have had numerous checkups and followups, medications, therapy and MRI's. Until recently I have been able to work full time, and have just recently applied for SSDI.
      I'am not a supportor of surgery or spinal fusion unless it is absolute. I'am not a supporter of further surgery, such as revision. The statistic that I have read do not support necessary successes for me, personally. It is something you must decide, all I can tell you is that I have had a pretty normal life but only because I have ADVOCATED for my rights as an individual with a disability.
      Live long and prosper!

      Comment


      • #4
        First, thank you both for your repiles. I'm still looking for more/good info specifically regarding lumbar (only) scoliosis. My curve is low- looking at my x-ray the curve starts at the sacrum. (my spine is a "C" shape). I can tell there's been significant rotation over the past few years as well. I can feel the bottom of my left rib cage rubbing against my pelvic bone when sitting in certain positions, or standing/walking for any extended period of time (more than an hour). I'm hoping to find someone who has had lower lumbar surgery- fusion w/instrumentation, or fusion w/lumbar cage... whatever, I guess. Mostly my life has been normal. I gave birth 3 times (all vaginally, and all 3 kids have great spines) and worked f/t until 2 yrs ago. With the pain, progression and age factor (I'm 42) I think surgery is the only answer. (and honestly, I am tired of being crooked!)
        -gabrielle

        Comment


        • #5
          All but two lower verts are fused in my spine, and I know that the pain and discomfort can be an issue. So my lumbar area is just one big fusion and an ugly one at that. I wish you the very best and keep looking for your answer, I know that originally my fusion did work for almost fifty years so if you decide on one. I sincerely hope that yours will last for at least fifty also. Medical and research has made significant progress in this area, but do consider the risks. God Bless.
          Live long and prosper!

          Comment


          • #6
            Check into STRS.com (Scoliosis Treatment Recovery System)
            I hope this helps.

            Comment


            • #7
              Lumbar spine

              Hi Gabrielle. I do not know if you still check this forum, but I came across your post and I too had scoliosis, primarily in my lumbar spine. Before my surgery, my lumbar curve was 70 degrees. I did have a thoracic curve of about 42 degrees, but my primary curve was in my lumbar spine.

              I was fused from T-11 to L5. My surgeon did not correct my thoracic curve during surgery. As it turned out, my thoracic curve spontaneously corrected itself after the surgery. My surgeon explained that straightening out the dominant curve can result in a simultaneous correction of the secondary curve. I had both anterior and posterior fusion, so I have two scars, one in the front going up towards my rib cage and the other just on my lower back.

              Did you ever have surgery to correct your lumbar scoliosis. I'm just curious since you wrote about your situtation and possible plans...
              Heather
              Surgery date: April 20, 2004
              Anterior/posterior surgery
              Fused T-11 to L-5
              Pre op lumbar curve: 70 degrees, thoracic curve: 42 degrees
              Post op lumbar curve: 19 degrees, thoracic curve: 18
              Surgeon: Dr. Boachie-Adjei
              Had successful pregnancy and birth 2 years post-op

              Comment


              • #8
                For Felicia

                the STRS is a scam. It preys on false hope.
                Karen
                Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
                Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

                Comment


                • #9
                  Originally posted by gabrielle
                  Hi! I've been looking in at the forums from time to time over the past couple months and I have some questions. I see that most people here seem to have double curves or thoracic curves. I have a 78 degree lumbar curve (last check was almost 2 years ago, it may be more now). I am going to see a surgeon next month- finally getting to a "point" in life where I can do something about it. (I was 23 when I was 1st diagnosed- curve was 62 degrees). I have searched the 'net for info re:adult idiopathic lumbar scoliosis and it seems to be more difficult to correct w/instrumentation. Is there anyone here that has lumbar scoliosis? Did you have surgery? If so, how was it (what did they do? what kind of instrumentation? anterior and/or posterior?) and how are you now? (do you have any advice, etc.?). What was your curve pre-/post-op? I'd like to get some firsthand feedback before I go to the Dr.- he may be able to "fix" it, but he doesn't live with it! Thanks!!
                  I have lumbar scoliosis and i have had two rods put in my back. one on each side of my spine to support it better. It saved my life. I was in heart and lung failure because the scoliosis was cutting off the ability to expand my lungs enough to breath on my own. I noticed an immediate change after surgery. I felt tons better!- Good luck I still have severe scolioisis but i am no longer in the position i was once in. -
                  Jenny-

                  Comment


                  • #10
                    I too am 42 years old and I am currently recovering from surgery for lumbar scoliosis. I do have double curves, but my thoracic curve has not been corrected. Most people bend back the other way to some extent, creating a second curve just so they can stay upright. Because my lumbar curve was bigger (and increasing), I was very unbalanced with a big sideways shift (head over right hip). My thoracic curve may also have to be corrected in time but so far they have left it alone.

                    You may find my blog of interest since we are the same age and my lumbar curve which was 70 degrees in 2003 had increased by about 10 degrees in the last 2 years. I also had a pretty big rotation. I am now very balanced side to side and remarkably straight for what they have done so far.

                    Hope this is of some help.
                    Double 63(T)/75(L) deg curve with big sideways shift - Surgery in UK on 8th February 2006.
                    Post op 30(T)/33(L)
                    http://warpedwoman.blogspot.com/

                    Comment


                    • #11
                      26 y/o male with lumbar scoliosis

                      hello i've been looking into these forums for quite a while i have lumbar scoliosis with some associated kyphosis in which my lower spine has a bump to it sticking out of the right side. my lumbar part of the spine has a C shape to it and my ribs at times feel to be rubbing with my pelvis. I dont know if the hump is rare since no one on these forums really talk or even mention it. The curve is very low in my spine, it basically starts where the pelvis starts so im afraid of the fusion since i know i'll be fused from the pelvis on up, hopefully only to where my ribs start. Does anyone have this type of fusion that starts that low, is the mobility extreamly limited? can you still bend? also i was wondering is it easy to eat at a dinner table since its prob. hard to bend over close to the plate

                      some help would be appreciated thank you
                      right lumbar curve T12- L3 43* T12-L5 69*

                      Comment


                      • #12
                        Rib humps are very common, as the ribs get pushed out of the way by the spine.

                        My fusion starts at my bottom vertebrae although there are lots of people on the forum who have been fused to the sacrum. I can still pick stuff off the floor and can bend pretty well considering the amount of metal they put inside you! Dinner is not a problem at all.

                        My ribs had actually passed inside my pelvis before they operated and it was a huge relief that they were able to put that right.

                        Hope this is a help.
                        Double 63(T)/75(L) deg curve with big sideways shift - Surgery in UK on 8th February 2006.
                        Post op 30(T)/33(L)
                        http://warpedwoman.blogspot.com/

                        Comment


                        • #13
                          26y/o male with Lumbar scoliosis

                          Wow thanx for the info, yeah i also have the rib hump on the side, but it seems like my spine sticks out of my back too like the curve, curves out side of my body i can feel my spine and the curve b/c it sticks out quite a bit i know if i get fused i will get fused from the pelvis on up since it starts too low. Also how much was ur back straghtened? was it a complete thing or is there still a slight curve? and did u gain any height too?.. One of the things i hate is that all my shirts fit horrible they all feel too long and very unconftrable b/c of the shirt feeling like its tighter from one side.

                          Also how is the recovery going is it what u expected refering on the way its making you feel? and if so do u think you would of gotten it sooner? Hope the recovery is going and keeps on going great..

                          thanx

                          ivan
                          Last edited by kardoid; 02-13-2007, 06:31 PM.
                          right lumbar curve T12- L3 43* T12-L5 69*

                          Comment


                          • #14
                            Hi Ivan
                            Have you had a surgical consult yet and did they tell you they would fuse from the pelvis? My daughter has a 60 degree lumbar curve that ends at L5.
                            Her doctor took her xrays with him to a spine conference where he discussed her case with 30 other physicians, none of them said they would fuse to the sacrum. All of them said the lowest they would go is to L4. The top level they would fuse varied. She's 14 so I don't know how that would make a difference but nowdays, dr's will try to preserve the lower vertebrae if possible. If you've only had one opinion, definitely seek out a few more.
                            As you know, the less they fuse the more flexibilty you will retain, the downside is if they don't fuse enough, there's a possibility for revision surgery later on.

                            Comment


                            • #15
                              26y/o male with Lumbar scoliosis

                              hey Sherie, thanks for that info. im bearly going to go get a consultation on the surgery they havent told me anything yet but by looking at my xrays thats what i think i guess im just playing dr. here. But i also think that my curve ends at L5, hopefully i get that info and the fusion wont be complete. Also all the luck to your daughter hope all goes well and just like all the other scoliosis suferrers hopefully something comes up soon that will make us straight with out surgery.


                              thanx once again
                              right lumbar curve T12- L3 43* T12-L5 69*

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