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  • Long term pain management?

    I had my surgery nearly 15 or so years ago for kyphosis. I'm not all that sure what the names for the various instrumentation was, but it's two rods about 1 foot long each on either side of my spine, connected together in two places with a perpendicular joint, and each of the two rods has 4 hooks which attach to my ribs close to my spine. In addition I had 10 vertebrae fused together with bone from my hip. I couldn't tell you exactly which ones they were, but I know they weren't much in the lower lumbar as I can still touch my toes etc.

    The problem is, while I had a considerable amount of pain post surgery which I fully expected, I continued to have moderate to worse pain periodically. I was expecting 100% recovery within 12 months, but I found that any sort of activity up to as little as jogging ended up causing a great deal of discomfort and progressively got worse if I continued. And I'm talking about 2-5 minutes worth of jogging here or 10 minutes of just walking. After a little bit of light activities, or light lifting of objects under 50lb as my doctor has recommended I find myself in a great deal of discomfort which progressively leads to greater pain.

    I've tried muscle relaxants, massage therapy, and some pain medication. While it all provides some relief, it's something I don't want to have to have on a daily basis. There are some days where I lay down and the pent up muscle strain surprises me as my back begins to relax. And some times, though usually only when I exert myself, the pain is so bad that I almost gasp for breath.

    I can't sit in chairs with hard backs, wood, metal, or hard plastic, as the rods or the clips on them can be very uncomfortable, and sitting in any chair for more than an hour or so (movies!) begins to get uncomfortable.

    I've had several appointments with the doctor that did my fusion and implants, and he has suggested the possibility of removing the hardware. I've resisted so far just dealing with the pain because the idea of going through another surgery isn't one I'm looking forward to. While of course it's not the same thing, the pain after my first one was no fun at all. I was on a morphine drop for a few days, and that stuff is horrible, nauseating and questionably effective. It seemed like it was more like it prevented you from concentrating fully on the pain rather than actually decreasing it.

    So anyway, what have any of you done to manage the pain? And how's the success on hardware removal? I've looked through the forums and there's only a few posts on it. Thanks for your time!

  • #2
    Removing hardware

    I'm sure others will respond, but I do recommend not getting the hardware out, until you are sure that your problem is caused by it. You didn't mention if you had any tests that would help determine the cause of your pain.

    It sounds like you have been experiencing what I did over the years. I always had this nagging pain the just got worse over time. How you treat the pain is up to you and your doctor.

    A second opinion is always appropriate when considering surgery.

    p

    Comment


    • #3
      I also made the mistaker of watching the removal surgery on the learning channel one day. It looks like (though this was a few years ago) they take stainless steel bolt cutters, stand on the table above you, and clip away ><

      What tests did you get? And what did you end up doing?

      Comment


      • #4
        Have you been to a pain management specialist? They can also give injections or nerve blocks to help the pain.
        Theresa

        April 8 & 12, 2004 - Anterior/Posterior surgery 15 hours & 7 hours
        Thorasic - 79 degree down to 22
        Lumbar - 44 degree down to 18
        Fused T2 to sacrum
        June 2, 2005 - Pedicle subtraction osteotomy @L3 7 hours
        MAY 21, 2007 - Pedicle subtraction osteotomy @ L2, extended the fusion to S2 and added pelvic instrumentation 9 hours

        FUSED T2 - SACRUM 2

        Comment


        • #5
          Originally posted by Theresa
          Have you been to a pain management specialist? They can also give injections or nerve blocks to help the pain.
          I didn't know there was such a thing. I'm not sure I'd want to have to take periodic injections for the rest of my life, but getting more information certainly couldn't hurt.

          Comment


          • #6
            PostOp123. I hope you find out all you can about the injections. Right now, I'd do almost anything to get some relief from the pain. The hydrocodones aren't helping all that much. The pain started 8 days ago and seems to be sciatica based but what do I know? For the first time in all of my kyphosis/scoliosis history, I'm unable to find a comfortable position in which to lay down. Everything hurts and we're not talking about wee little aches but I'm either yelling out loud or crying due to everything hurting; pain on a scale of 6 and 7's. When that muscle or nerve in my right leg gets pushed or squeezed or is bearing all the weight, I swear the pain level goes to a 10. I have a doctor's appt today with my surgeon and surely he must recognize the deterioration that has happened. I won't be patted on the head and dismissed. This is a new pain; most disabling and I need treatment or at the very least, the looney bin. To have gone so far and now to be reduced to this whining bawling mass of pain. I've never asked for much, but I'm asking now. Stop the pain. Stop the bending over which leads to more pain. I don't want to be like this. It's not a bright future. No one wants to constantly hear how bad you feel.
            Diane in Dallas
            Adult Ideopatic Scoliosis (37%) and Kyphosis (65%)
            Surgery #1 8/4/03 - Dr. Shelokov, Plano
            Surg #2 12/8/03 - Dr. Shelokov, Plano
            Surg #3 1/10/05 - Dr. Shelokov, Plano
            Surg #4 9/10/07 - Dr. Viere, Dallas
            Surg #5 1/28/08 - Dr. Viere, Dallas
            Surg #6 4/27/09 - Dr. Viere, Dallas

            Comment


            • #7
              Diane BCSW + PO123

              Diane-- I am so very sorry for what you are going through. Actually, for ALL that you've been through-- all those surgeries that, at the time, were endured and recovered from with the hope of being "fixed", but then were real disappointments. I will be praying for you and your appointment today. No one should have to live with the kind of pain you are experiencing now. I am so sorry. Let us know what he says. Wish I could give you a real hug-- and cry with you. Please keep us posted with how it's going, even when it's bad. Hugs, Susie

              PostOp123--I wish I had suggestions to help you, but other than seeing a pain management doctor-- and possibly getting a second opinion about what to do next concerning your pain and possible hardware removal, I can't think of anything. Best wishes as you continue your search for a good solution to your pain. (And yes, I can see how watching that rod removal surgery on TV could impact your "view" on the whole thing! )
              71 and plugging along... but having some problems
              2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
              5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
              Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

              Corrected to 15°
              CMT (type 2) DX in 2014, progressing
              10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

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

              Comment


              • #8
                You may find that a pain management clinic / dr could be a good long term solution. I have been seeing a pain dr for 15 yrs & on pain meds for same time period. There are many meds they can select from. You may also discuss the subject of an implanted pain medication pump. They are a wonderful thing. I have one for 3 yrs now & love it! It makes it feel like you never had pain. Meds are safe if you follow your dr's directions. You can take them for the rest of your life if need be. Just be sure to find a pain dr that is an anesteologist (spelling"). They are the only ones that install pumps or write meds. Best of luck to you.
                scoli appeared age 15
                untreated until age 30
                41* T & 72* L
                Harrington Rod T4 to L4
                33* T & 53* L
                neck instrumentation C3-4,C4-5,C6-7
                Revision coming up in Nov. 2012

                Comment


                • #9
                  Injections

                  Originally posted by PostOp123
                  I didn't know there was such a thing. I'm not sure I'd want to have to take periodic injections for the rest of my life, but getting more information certainly couldn't hurt.

                  Steroid injections can only be done a few times. After repeated injections, they can cause more inflammation than reduce it. Pain management in its various forms can help long term. Muscle strengthening is helpful--even though it may seem like it makes your pain worse. Water aerobics worked for me because I found a class near my house and was really cheap. Others use yoga, pilates, or swimming. Anything low impact.

                  Have you had an MRI or CT scan?

                  p

                  Comment


                  • #10
                    For PostOP123 &amp; DianeBCSW

                    I have been with my pain mgmt dr. who is an anestesiologist, for the past six years who has been keeping my pain at a tolerable level successfully. But for the last year I've been suffering with pain in my sides of my low back and into the buttocks. It is now intolerable. I could not sleep and turning or getting out of bed was so painful (and I have a very high tolerance for pain) I had seen Dr. Boachie in 2002 as I had not seen a scoliosis dr. since 1981 when I had my original surgery. July 3rd of this year I saw Dr. Boachie again. Things have changed and he noticed immediately the problem. I have a disc that is slipping and the discs below are deteriorating. He said surgery is the only way to get rid of this pain. He would remove the disc and extend the rod. The reason for the pain into the butt area is the joints and said I could try the facet joint injections in L3/4 - L4/5 and if that gave me relief it would confirm the problem. He wanted an MRI done as well. I elected to do the injections and had them done by my pain mgmt. dr. in NJ this past Tuesday. I know it's only two days ago but I have absolutely ZERO pain in that area. I realize it will return but for now, I'm in heaven. Dr. B. said it could do nothing, last a week but also could last up to three months and then I could have another one (or I think perhaps another two). It was done at a surgical center in the OR and I was mildly put under - dont' remember anything until they woke me up. The procedure was about 20 minutes. Four shots and that was that. I'm so glad I did it, and if it lasts for a good amount of time - like a few months (certainly not just a week), I will do it again. I was back at work the next day doing fine. I am continuing the meds that I've been on for the past six years so that is helping the upper back pain.

                    I do have a question for anyone that may have experienced the following about Celebrex: The surgical center called me on Friday with the instructions about eating, etc. Asked me what meds I was on. When I told them one was Celebrex, she told me to stop as it was a blood thinner. I had taken one (200 mg) in the morning but discontinued as of then (I also take one at night). I woke up Monday morning and I literally could not move my neck. OMG It was so stiff and painful, I couldn't even turn it to the right or left, up or down, and lifting my arm to dry my hair (because I thought I was going to work - which I didn't) was impossible. I called my pain mgmt. dr. and he said that I did not have to stop and to take it. Would that have caused such intense pain as I went off it sort of cold turkey? It was really only two and a half days without it. I still have a stiff neck but no comparison from Monday. Maybe just a coincidence? The previous day I was laying on a lounge chair in the backyard and took a nap for about an hour (I realize they are not the most comfortable chairs) so maybe that had something to do with the neck? I have a followup with pain mgt. next Friday and will go over this with him as I'm not a fan of taking meds to begin with and this was quite disturbing.

                    Hope this helps and good luck. Regards, LYNN
                    Last edited by Jacque's Mom; 07-24-2008, 04:03 PM.
                    1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
                    2000 Partial Rod Removal
                    2001 Right Scapular Resection
                    12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
                    06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

                    Comment


                    • #11
                      Your situation sounds similar Postop123

                      Hi Postop123,

                      It seems that we have similar situations...I had my rods put in 10 years ago at age 16.

                      Before my original surgery, I suffered from intense burning, stabbing in the upper right shoulder blade.

                      After the surgery, the pain came back a year later in that same spot. Since then, I have been deteriorating. I cannot sit against anything hard and cannot stay seated for very long without much pain.

                      I almost feel knotted or twisted down the center of me on the inside....like my body does not want those rods in.

                      I am on my way to St. Louis and Cleveland to see two surgeons. I have been to one closer to home as well....I'm thinking I'm probably going to need the rods out.....I'm very leary as you are...but I can't keep living like this at only age 26. I figure I can't take pain meds the rest of my life and try to teach and/or have children at some point.

                      Keep me posted.

                      Scolimich in Michigan

                      Comment


                      • #12
                        Long Term pain Management, well guys I honestly dont know if there is any, and if there is I havent heard of it. Revision surgery seems the only way to go. Karen Ockers story is a good news story to read so I suggest you do that. Hope you dont mind Karen,
                        I have been in pain for such a long time, as most of the older ones on here know as I get on here now and again moaning, not able to help it though, I sympathise with all of you as honestly no one has any idea what the pain is like unless you actually have to go through it yourself.
                        I have had all the injection etc, only thing I havent got is the pain medication pump, that costs $8000 here in Australia and I am not covered in Medical benefits, so thats why I havent got one as yet.
                        Pain meds help a little but the pain keeps breaking through and it is no good then increasing the meds as the body gets used to the increased dose and then you have to keep increasing and so on and so on.
                        I am on a very strong pain killer and only take 45 mg a day. Keeping at that level is only just bearable, believe me the pain does not go.
                        I will pray for all of you and I do hope that you all find something that will help, as i really do understand.!!!

                        Macky
                        Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
                        Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

                        Comment


                        • #13
                          Celebrex

                          Jacque's Mom:

                          I too also take Celebrex 200 mg daily. I was always told that I could take it until the day of my surgery or any blocks. In fact before each of my spine surgeries (2,3,4) my surgeon Dr. Hey would give you a medicine cup with 4- 200mg pills to take right before surgery. The nurses told me he does this with all of his patients. I never really understood why or got a true explanation of the thinking behind it. I get injections and facet blocks several times a month and I've never been told to stop taking it-especially cold turkey which isn't good at all b/c you will have lots of increased inflammation. Hope this helps with your question. Take care!

                          Amanda
                          4 Spine surgeries & revisions- fused T2-sacrum

                          Comment


                          • #14
                            Amanda ...

                            Amanda - How long have you been getting these injections and how long do they last for you? I'm feeling pretty good with the first try and keeping my fingers crossed. I'm sorry to hear you've had so many surgeries and still trying to figure out this pain. Thanks for responding. Lynn
                            1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
                            2000 Partial Rod Removal
                            2001 Right Scapular Resection
                            12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
                            06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

                            Comment

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