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  • Ongoing pain

    It's been awhile since I have posted and I feel a little embarrassed to come back needing input. My surgery was 2 years ago and I am back to the crippling pain I had before the surgery: however, 1 reason I've been lax at keeping up with the forum is I was diagnosed with Primary Progressive Multiple Sclerosis 1 year ago. Therefore, just as I thought my life was coming back together ~ life through me another curve. I am partly convinced that I am in a partial state of denial, but the one thing that is certain is the debilitating pain. My surgeon tried cortisone injections above my fusion (T-10 thru S-1). It didn't provide me any relief. I have been through the gamut of anti-seizure meds (which they use for MS pain as well) with horrible side affects. Neurontin, Tegretol, Cymbalta, Lyrica, etc. etc. etc. So, now it's back to the Percoset which is again the only thing that provides any relief. I'm due back to see the neurologist in 2 weeks, but the neuro guys are nearly totally resistant to using the opiates for pain. I get 'you know they are so addicting'. Yes! I realize that, I took them as long as I had pain post-op and that was that. I tell them I am also addicted to being able to live a life that includes functioning beyond getting out of bed, eating breakfast and heading for the recliner to vegetate because if I don't the pain is unbearable. The pain starts directly above my fusion and spreads throughout from there. I was pain free in the morning when I got up until a month ago, now it's 24-7. Any advice or suggestions?
    Good to be back, but wish it were under different circumstances.
    Always fondly,
    Gayle
    Gayle


    November 4, 2004, 57 yo
    Instrumented Spinal Fusion ~ T 10 -S1

  • #2
    Hi Gayle,

    Gosh I'm so sorry about all your pain and your other health issues

    I can relate about horrible side effects when taking pain meds, I tried Lyrica and had to stop, but I was starting an allergic reaction to it, as I am allergic to many meds or I get serious side effetcs that I have to stop taking them. I think you should seek many opinions, to see what you need to do, and never give up even if you think nothing can be done, or if that's what certain doctors tell you.

    Keep in touch and good luck, and please don't feel embarassed about sharing your pain and worries and seeking help here That's one of the reasons this forum exists.
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

    Comment


    • #3
      I'm so sorry to hear about your pain. I too think you should seek multiple opinions.. I am doing that too. My thoughts and prayers go out to you, I hope you can find some relief soon!
      Angela
      29 y/o f w/76 degree curve.Surgery done on June 26th, A/P, rods, instumentaion, rib removal- now 18 degrees!!

      Comment


      • #4
        So sorry

        So sorry to hear about your condition. Yes, it always seems that we are hit with the big whammies all at once - as for your pain, might I suggest, as have others, that you seek out other opinions, it is your body, your life and you have the right to live it pain free.

        As for the MS - my sister was diagnosed years ago ( at the same time she was going through her divorce), and she has thus far been able to lead a very normal and active life - she is on inhibitors that are working fine, she gives herself an injection once a week.

        We are here for you - no need to feel bad about venting -

        Comment


        • #5
          I wish I had something to offer in the way of advice, but I don't. I am glad you came back to the forum and decided to post about what you've been going through. You never know who might be reading, you know? I feel for you. I lived with near debilitating pain for about 8 years before I had surgery. Maybe seeking another opinion will help. I hope you find some relief soon.
          Brandi
          Congenital Scoliosis, 58* lumbar curve
          Combined Anterior/Posterior Spinal Fusion w/Laminectomy May 22, 2006
          L1-S1
          Dr. William Lauerman
          Georgetown University Hospital, Washington, DC
          Pedicle Subtraction Osteotomy @ L3, Posterior Spinal Fusion L2-L4, rod removal with re-instrumentation T10-S1 and Laminectomy February 5, 2009 to correct flatback
          http://brandi816.wordpress.com/

          Comment


          • #6
            Hey Gayle,

            I was surprised to see you had posted. I haven't seen anything from you in so long. Sorry to hear about your diagnosis and your pain returning.

            My doctor did a CT scan on me to make sure no screws were touching any nerves because of the continuing pain that I have.

            I have not left here. I mainly just read and reply every once in a while. I think that I was unintentionally scaring some of the posters with my stories.

            The site has really grown since your surgery. You might want to also go under the revision surgery. Hope to hear more from you.
            Last edited by Theresa; 10-18-2006, 10:36 PM.
            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


            • #7
              Hey Gayle,

              I was surprised to see you had posted. I haven't seen anything from you in so long. Sorry to hear about your diagnosis and your pain returning.

              My doctor did a CT scan on me to make sure no screws were touching any nerves because of the continuing pain that I have.

              I have not left here. I mainly just read and reply every once in a while. I think that I was unintentionally scaring some of the posters with my stories.

              The site has really grown since your surgery. You might want to also go under the revision surgery. Hope you hear more from you.
              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


              • #8
                Hi Gayle...

                I'm really sorry to read that you've had such a bad outcome.

                While I agree that you should take narcotics if you need them, I'd like to encourage you to try other options as well. Once you're on high doses of narcotics, I think it's difficult to have a good outcome from any further treatment.

                I'd like to encourage you to see another scoliosis surgeon for another opinion, preferably one who has a lot of experience treating patients with prior scoliosis fusions. It's possible that you won't get any additional information, but it's also possible that someone with a lot of experience may have the answer. Unfortunately, I don't really know of anyone in Tucson with that sort of experience. Would it be possible for you to travel out of the area to see someone?

                Regards,
                Linda
                Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                ---------------------------------------------------------------------------------------------------------------------------------------------------
                Surgery 2/10/93 A/P fusion T4-L3
                Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                Comment


                • #9
                  Originally posted by Theresa
                  I have not left here. I mainly just read and reply every once in a while. I think that I was unintentionally scaring some of the posters with my stories.

                  I sometimes think that, and it is not my intention. But I think about myself when I joined this forum and got scared b/c of all that I read, and then I got OVER that feeling, and it has made me not only stronger and realistic but really, just better informed.
                  35 y/old female from Montreal, Canada
                  Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
                  Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
                  Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
                  Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

                  Comment


                  • #10
                    Thanks so much for the support

                    How good it is to be back to the forum. Hey ~ Theresa and Linda it was so good to see you on my reply list. Almost like a little reunion ..:>). I suppose when one goes through the kind of surgery we have had it creates a special bond wherever we may be. I am going to take your advice and search for another specialist; although I have a follow-up appt. with my current surgeon on the 31st, and an appt. with my neurologist the following week. Will keep you informed as this entire episode progresses. My surgeon is saying that spinal stenosis is the culprit, we'll see. For those of you who addressed my MS, I should have perhaps been more specific. MS presents itself in more than one categorey some of those being; Relapsing- Remitting,
                    Relapsing-Remitting-Secondary Progressive, and the type I was diagnosed with is Primary Progressive MS. Unfortunately the interferon meds are not effective for this type. It is treated systematically with one drug in the chemo family, which has a limitation on how much you can take over a lifetime as it has negative affects on the heart. You know I told my neuro guy, I may have to live in a wheelchair but I'll keep dancing in my heart always. Thanks again, I couldn't have made it 2 years ago without your support and I thank God for you now.
                    Always fondly,
                    Gayle
                    Gayle


                    November 4, 2004, 57 yo
                    Instrumented Spinal Fusion ~ T 10 -S1

                    Comment

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