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  • Leg pain?

    Hi all,

    What is scoliosis-related leg pain like? I've never had it in the past, but my leg has been hurting for a few weeks now with no obvious cause. Is this what all the doctors have been saying would happen eventually?

    It doesn't hurt when I'm sitting or laying down, but it does when I'm walking or standing. Seems to move around--anywhere in my quad or knee area. Feels a little like a muscle strain, but I didn't do anything to it, and it doesn't seem to be getting better. I was expecting more of a shooting, nerve-type pain from scoliosis, but is this it? Any thoughts would be appreciated.

    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.

  • #2
    Hi Confusedmom,
    Leg pain can be anything and everything you mentioned from a dull ache to a shooting pain so bad that you can't stand up. It can be anywhere on the leg from the toes to the buttocks. Google Dermatomes and you can probably figure out what level in your spine is causing the pain or at least come close. I hope this helps.
    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.

    Comment


    • #3
      it's a hard to describe pain that doesn't respond to normal OTC pain medications. It was a constant pain that NEVER went away or stopped. To me, it felt like it was right under my skin (not type muscle pain.) Sometimes it also tingled or itched, but not all the time. Rubbing it always felt good, but didn't relieve any of the pain.

      BTW, my nerve pain completely disappeared immediately after surgery.
      __________________________________________
      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


      • #4
        Evelyn,
        I had severe sciatica before my first surgery which progressively got worse as my lumbar curve progressed. It was a 10/10 at its worst. The location depends on where the nerve root is being compressed. Mine was at L5 which gave me pain in my lateral left leg (the side of my leg). It did not hurt sitting or lying but hurt like the dickens when walking or standing. To relieve it I would sit and bend my knee , bringing my knee up to my chin. Sciatica can be mild to moderate to severe. Since my initial surgery that pain is all gone. I'm having mild sciatica since my revision surgery at L5 in the right leg and that is located in the lower lateral leg and my big toe. You can google sciatica, and the nerve roots to see where the pain locates. Good luck!
        May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

        March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

        January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

        Comment


        • #5
          My leg issues were on the left side, only from the knee on down. It wasn't pain but numbness and tingling into my foot. I even had a minor nerve release procedure done on my peroneal nerve about a year before my surgery. After so many years of standing with so much more of my weight on that side, I had sort of a carpal tunnel thing going on in the lower leg nerve. That procedure helped a little, but the nerve thing was totally relieved by my surgery.


          Anne in PA
          Age 58
          Diagnosed at age 14, untreated, no problem until age 50
          T4 to sacrum fusion
          63 thoracic now 35, 92 lumbar now 53
          Dr. Baron Lonner, 2/2/10
          Am pain-free, balanced, happy & an inch taller !

          Comment


          • #6
            hi it chould be a number of problems
            Kara
            25
            Brace 4-15-05-5-25-06
            Posterior Spinal Fusion 3-10-10
            T4-L2
            Before 50T
            After 20T

            Comment


            • #7
              Last November I had what you described (plus other things). But that was the main problem down to the foot (left side too). After trying everything, plus painful injections to close a vein (kind of right thing to do but not cause of pain) I saw 3 surgeons in town, and after MRI's found L4-5 disc was shot dripping onto my nerve (sciatic) which caused numbness. In my case, I had to have surgery or I would lose my leg. I wouldn't fool around with numbness. They said nerve damage is very probable the longer you wait. Get to a scoli surgeon and get MRI's and please let me know what is going on.
              XLIF 7 discs replaced L5-T10 lateral PEEK implants, pedicle/facet screws, rib resection
              Pre-surgical: 40 d lumbar-thoracic, sponylolisthesis, kyphosis, all discs ruptured, stenosis
              Post-surgical:12 d, 1" taller
              Surgery: 8/27/2010 Dr. W Smith, Las Vegas University Medical Center
              53 yrs old

              Comment


              • #8
                Evelyn

                Usually the leg pain is caused from an impingement down low, in the lower lumbar area. I had 4 ct verified herniation’s in this area back in 2002, and was one of the indicators for my surgeries. I was running out of time.

                What is it with all the “lefties” here ? I had my sciatica on my right side. lol

                Severe sciatica in my case felt like a horse kicked me in my hip (greater trochanter) and I also had the “flame thrower” on the top of my ankle. I tried everything to postpone, and the one thing that did help was ocean therapy. Swimming in the ocean helped de-weight my spine and the discs did retract probably due to the “elasticity” of the disc. NSAID’s also helped.

                I had about 4 sciatica events over those 6 years, with the longest being 9 months.

                It also seemed that either the pain was a 1 level tingle or numbness, or full strength 10 level pain, with no in between setting. It’s the 10 level deep sciatica pain that steered my thoughts to surgery.

                Full blown sciatica is devastating. It completely cripples you.
                Ed
                49 yr old male, now 63, the new 64...
                Pre surgery curves T70,L70
                ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                Dr Brett Menmuir St Marys Hospital Reno,Nevada

                Bending and twisting pics after full fusion
                http://www.scoliosis.org/forum/showt...on.&highlight=

                My x-rays
                http://www.scoliosis.org/forum/attac...2&d=1228779214

                http://www.scoliosis.org/forum/attac...3&d=1228779258

                Comment


                • #9
                  Originally posted by titaniumed View Post
                  I had about 4 sciatica events over those 6 years, with the longest being 9 months.
                  This completely blows my mind.

                  It also seemed that either the pain was a 1 level tingle or numbness, or full strength 10 level pain, with no in between setting.
                  This is very close to how I would describe my herniated disc situation which was either 0 or 10. Was this traced directly to your herniated discs?

                  It’s the 10 level deep sciatica pain that steered my thoughts to surgery.
                  My thoughts were steered towards throwing myself under a bus. (smiley face).

                  I would not have lasted 9 months as you did. That blows my mind.

                  Full blown sciatica is devastating. It completely cripples you.
                  Ed
                  I am having what I would say are mild episodes of that. You are scaring me about if it gets worse. (smiley face)
                  Sharon, mother of identical twin girls with scoliosis

                  No island of sanity.

                  Question: What do you call alternative medicine that works?
                  Answer: Medicine


                  "We are all African."

                  Comment


                  • #10
                    Ed, My sciatica was on the right side. That"10" sends you right to the hospital ER. What I couldn't understand was why I was never x-rayed to find out what the problem was. Give the old girl a shot of Demerol and a script for Percocet and send her on her way.
                    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.

                    Comment


                    • #11
                      A herniated disc sent me to hospital, but I may as well have stayed at home. They couldn't x-ray me properly due to my level 10 pain and the morphine drip that didn't make any difference whatsoever. They assumed it was a herniated disc. They gave me Panadeine Forte which also did absolutely nothing. I checked myself out at day three when it was apparent they were not going to help me. This was our local public hospital. It was 6 weeks before I could hobble painfully outside and stand for more than 15 seconds. 10 months of agony before it eased up. I wouldn't wish a herniated disc on my worst enemy. My fusion surgery was a walk in the park in comparison. No kidding.
                      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

                      Comment


                      • #12
                        well, that is a comfort...because i have been living with herniated discs for years now!
                        the pain has gotten much worse in the last 2 years...degenerative disc disease is no fun!
                        nothing seems to help....i have tried all the injections...and facet block, and nerve ablation, etc etc...

                        i never believed sciatica was a big deal...for years, it rarely bothered me...now it is daily pain from it...the nerves, numbness and tingling go beyond, into pain...amazing...quite a shock! nothing has helped the sciatica, either...

                        soooo..if you say herniated disc pain is worse than fusion, then i guess i should be able to withstand fusion....? it isn't even the pain that scares me so much...it is the fusion to pelvis that has me frozen in my tracks...

                        jess

                        Comment


                        • #13
                          I know Jess. I wish I could somehow take away your fear about being fused to pelvis but I am not sure what aspect of it concerns you the most. I know you're very familiar with pain, and you will cope with the pain of surgery very well.
                          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

                          Comment


                          • #14
                            thanks, Jenn
                            now if i could just get all the stuff out of my head about robots....
                            and big bellies, and fatigue for 2 years, and pain at screw sites (which surgeon already told me i'd feel due to being extremely thin now, and small boned)...i am back down to 92 pounds, struggling to avoid the 80's!

                            Lonner told me i would most likely need screws removed after a year...even with minimally invasive approach...i remain frozen...not going forward, probably getting worse...

                            this is not to complain...i know it is my decision, and mine alone...
                            i admire all who have made their decisions...including you!
                            i guess at some point, i may be forced to...

                            jess

                            Comment


                            • #15
                              Originally posted by jrnyc View Post
                              thanks, Jenn
                              now if i could just get all the stuff out of my head about robots....
                              and big bellies, and fatigue for 2 years, and pain at screw sites (which surgeon already told me i'd feel due to being extremely thin now, and small boned)...i am back down to 92 pounds, struggling to avoid the 80's!

                              Lonner told me i would most likely need screws removed after a year...even with minimally invasive approach...i remain frozen...not going forward, probably getting worse...

                              this is not to complain...i know it is my decision, and mine alone...
                              i admire all who have made their decisions...including you!
                              i guess at some point, i may be forced to...

                              jess
                              Jess,
                              Just to address your concerns about fusion to pelvis, as you know, I was fused to the sacrum first and then extended to the pelvis. I have not really noticed a difference in flexibility. The screws don't bother me and I don't anticipate removal. I am small boned and very small as you are (although not 90 #). Do you think after fusion, when you are not taking so many narcotics, that you will gain weight? I am not a walking robot either, and I wish I could alleviate that image from your mind. Honestly, after 2 surgeries, my limitations are that I bend from my hips instead of my waist. The way this affects me in my daily living is when I put on my shoes, I have to pull up my leg instead of bending over to tie my shoe. It just takes a little longer. And getting things out of the dryer , while getting easier all the time and is doable, just requires extra effort. I can't turn to look at something behind me without turning my whole body so I might miss something if hubby says "look at that!" while we are driving. I'm just not as quick. Overall though, it's been worth it to get rid of the disabling sciatica and back pain I was experiencing. Oh, and I don't have a big belly!
                              May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

                              March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

                              January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

                              Comment

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