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  • Thoracic Pain (ax in my back)

    Hello everyone:

    I'm fused T2-L3.

    For thirty years, I have suffered with various types of thoracic pain. I've had a tight "bearclaw" feeling, burning, a DEEP ache in between my shoulder blades and over shoulder blades and rib hump (feels like there's a chainsaw in my back) and general horrible fatigue feeling in my upper spine. In the past few years the deep thoracic ache is so bad at times that I actually cry in public. Also, the past two years I frequently wake up in the middle of the night and in the morning with my right arm numb and it takes me several minutes before I can move my numb fingers.

    The only good thing about the "ax in the back" pain is that, unlike my broken spine lumbar pain, it comes and goes. But, when it comes it's a mother!!!

    All my MRI's and X rays have shown nothing.

    I've asked every Scoliosis surgeon about it (and I've seen several recently) and they either won't comment, or they say there's nothing they can do about "it," but they don't say what the "it" is. Finally, one surgeon actually talked about it with me. He said that "all of us" - meaning anyone who had had Scoli surgery eventually got this thoracic pain, and that no one had any idea what caused this pain, or what is was and that there was absolutely nothing to be done about it.

    This is just unacceptable to me. Why hasn't any research been done for us? I think as Scoli patients we need to stand up for ourselves and demand that the Scoliosis medical community start taking this seriously and DO something! Why hasn't the Scoliosis research society done a study on this? Doesn't anybody care about us? Sometimes I think they just fuse our spines, go home to their families and their dinner, say to themselves "Oh, I straightened another spine," and don't give a darn fig about our pain afterwards.
    1st surgery: Fused T1-L3 in 1987 with contoured Harrington Rods. Rods broke at top.
    2nd surgery: Re-done two weeks later; fused C7-L3. Left in chronic pain.
    3rd surgery: Hardware removal 1997, but still pain for 30 years.
    4th Surgery: Fused to the sacrum in 2016. Came out of surgery with left foot paralysis. (Drop Foot) Can't walk on my own.
    I'm blessed to have found my peace and reason to live not from a husband or kids (I have none) but from God and within myself.

  • #2
    Just a suggestion but have someone make sure your scapula are moving correctly. My right scapula kept causing a snapping and locking pain. This went on for years. Finally the scapula locked on a set of deformed ribs. I recently had a very unusual surgery to help fix the problem.
    Since the scapula moves through there maybe it can cause the pain. I will send more info if you would like it.
    T10-pelvis fusion 12/08
    C5,6,7 fusion 9/10
    T2--T10 fusion 2/11
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16
    Broken neck 9/28/2018
    Emergency surgery posterior fusion C4- T3
    Repeated 11/2018 because rods pulled apart added T2 fusion
    Removal of partial right thoracic hardware 1/2020
    Removal and replacement of C4-T10 hardware with C7 and T 1
    Osteotomy

    Comment


    • #3
      There are no answers to the bear claw gripping in the thoracic. It seems that we need to be able to lay down when this happens, it always helps.....

      When you look at photos of scoliosis surgery, the 5 inch wide trench the length of our spines is quite invasive. I have gotten used to looking at these photos now so don’t really think about it much but it is invasive surgery, no doubt. This stripping of soft tissues creates scar tissue and scar tissue is a problem. I have stitches in my head from an accident when I was a kid, and I have had to scratch this area every day for 50 years. This is also a shallow cut. Its scar tissue related, it has to be, perhaps the nerve cells reacting to atmospheric pressure? That’s the best I can figure.

      My surgeon mentioned that it’s moisture related, but I’m a diver and it doesn’t get wetter than that. (smiley face) I don’t notice any difference on the spine while diving now that I’m fused.

      I think that we have posted about our bear trap issues here quite a bit over the years and someone has to be reading.....it’s a common occurrence.

      What’s strange is that this feeling doesn’t happen in the Lumbar spine. Those pains are different. I’m sure many would agree. My anterior scars produce no pain whatsoever, so this really creates a conundrum.....Every time we might think its something, its something else. Self diagnosis is fruitless.

      We are complicated. Our bodies are engineered beyond belief, beyond knowledge. So complicated that we cant figure things out in thousands of years.......

      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


      • #4
        Ugh what? I have this to look forward to? Ed, when does this usually start?
        Cathy
        2 sons, one Syracuse University graduate (working for the Mets now), one college sophomore, one great husband and two fabulous cats
        54 years old March 5
        AIS 45 degrees Thoracic at 14, Milwaukee brace for one year in 1977 then in 2012 I found Dr. Baron Lonner ❤️
        Surgery April 8 2015
        Presurgical curves T77 L66
        Post surgical T27 L22
        Fused T3-S1 pelvic fixation, osteotomies and all the other stuff but you know what? It's done...

        Comment


        • #5
          Unfortunately, Ed is correct. I have it as well.
          Melissa

          Fused from C2 - sacrum 7/2011

          April 21, 2020- another broken rod surgery

          Comment


          • #6
            As your body heals, and after all the pains of immediate recovery pass, you will notice what “might not” heal, or notice any problems areas.......We all hope this doesn’t happen, and there is no way of knowing. This is why surgery is usually though of as a last ditch effort.

            This seems to stand out if every single thing is perfect......If there are 100 problems and 99 get fixed, you going to feel that final problem. 99 out of 100 on a test sounds pretty good, but with surgery, surgeons are expected to get 100% on the test of surgery, when there are things that are not known or beyond their control.

            The pains that Table is talking about are Harrington rod related which I don’t doubt for a second. The Harrington rod survivors of today are a special group, along with all the elder cast scolis that are out there. It was what they had at the time. Dr Harrington was a pioneer because he considered something that was outside the box. It was a radical concept at the time and he was trying to save these kids lives down in Houston. One thing led to the next and now we have modern style hardware. In the future, there will be no hardware.

            I have a bear trap thread I started many years ago......it’s a gripping and not an axe type of pain.

            Once again, try not to expect problems.....

            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


            • #7
              My surgeon said that if you do heart surgery and the patient improves 30% the surgery is called a success, but if you perform back surgery and get a 30% improvement in pain, patients consider the surgery a failure. Just food for thought. Kind of a glass half full vs half empty.
              Before 39* lumbar at age 18, progressed to 74* lumbar and 22* thoracic age 55
              ALIF Jan 13, 2015, PLIF Jan 15, 2015 with Dr William Stevens, Honor Health
              Fused T-7 to S-1 with pelvic fixation

              After 38* lumbar

              Xrays
              Before: http://www.scoliosis.org/forum/attac...7&d=1414268930

              After: http://www.scoliosis.org/forum/attac...6&d=1424894360

              Comment


              • #8
                Lizard: I looked at your X-rays....where is your L pelvic anchor fixed?
                Susan
                Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                2018: Removal L4,5 screw
                2021: Removal T1 screw & rod

                Comment


                • #9
                  Originally posted by susancook View Post
                  Lizard: I looked at your X-rays....where is your L pelvic anchor fixed?
                  Susan
                  I don't have one - I was too drugged up at my first follow up appointment to notice this on the xray, but I saw it later and posted about in my thread. I did ask the surgeon about it and he told me he doesn't always anchor both sides, that it is not necessary in all cases. Linda said she only has one, too. If you dig through my thread I think some others commented they only had one also.

                  As long as I fuse OK, I'm happy about only having one.
                  Before 39* lumbar at age 18, progressed to 74* lumbar and 22* thoracic age 55
                  ALIF Jan 13, 2015, PLIF Jan 15, 2015 with Dr William Stevens, Honor Health
                  Fused T-7 to S-1 with pelvic fixation

                  After 38* lumbar

                  Xrays
                  Before: http://www.scoliosis.org/forum/attac...7&d=1414268930

                  After: http://www.scoliosis.org/forum/attac...6&d=1424894360

                  Comment


                  • #10
                    I've never had this bear claw thing. I have often wondered what was different about my surgery. I'm 6.5 years out now and I am hoping your surgeon is wrong on that point, tableone!

                    I still walk about 5 times a week. My surgeon told me to walk daily for the rest of my life. Does everyone who has this bear claw pain walk daily? When I walk, I can feel movement across my rods in the thoracic area as I swing my arms. Just wondering...
                    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


                    • #11
                      I have bear claw too. What sets is off is if I'm in a crowded area, I tense up because I've had people bump into me hard. That stress immediately shows up throughout my thoracic area. Ed's right, laying down helps tremendously. Things that have helped are weight training (surgeon approved) and massage every 3-4 weeks. Some people experience it and others don't.
                      44 years old at time of surgery, Atlanta GA

                      Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
                      Post-Surgery curves ~10 degrees, regained 4 inches of height

                      Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
                      2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

                      http://thebionicachronicles.blogspot.com/

                      Comment


                      • #12
                        I am confused as to what you ladies are referring to when you say bear claw. I do not have thoracic rods but I am fused in my thoracic spine. I do have lumbar rods. I have always had a pinched feeling in my thoracic spine. Mostly during the holidays when I would be out shopping and tensing up holding onto bags. My pinch has turned into something more constant and I now feel it almost all the time. It feels like a knife turning in between my spine and my rib hump.i have told both of my surgeons and they both have not investigated it. They just prescribe Valium as they believe it to be a spasm. Is this the feeling you are talking about? Is this a spasm? Has anyone had another answer from their doctor? It's 4:30 am and this pain just woke me up from my sleep. I have also reported the pain waking me up at night seems like a lot of people complaining about this same symptom. Dos anyone know what this is?

                        Comment


                        • #13
                          Upper back thoracic pain Harrington rod

                          I’m 44 yrs post op and never had a problem with my Harrington rod. I had 3 children natural childbirth without any problem except I couldn’t have an epidural because of the calcium that built up around the rod. About 5 months ago my upper back began to give me a lot of pain. My rhomboid muscle felt like someone was stabbing me! I had a CT and numerous X-rays and all of the drs said it looked muscular. They wouldn’t give me an MRI due to the Harrington rod. I went to PT and think it made me worse! Now where the rods ends at T5 it really hurts! Actually now my entire top of my back hurts! It’s a few months now and I’ve befn to many drs. I do not want another surgery but I wondered if anyone else has experienced this pain??

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