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  • Pain Management

    I went to the pain management doctor today who informed me he is unable to give me epidural shots of cortizone which my doctor prescribed. He said to try acupuncture to see if it helps. He is trying to get approval from my medical insurance for a teuns unit (sp?) which may help with some of the pain.

    My other alternative is to have all my hardware removed which he does not recommend. I won't go for it anyway. It's been there 33 years and it's staying there.

    I never had any idea I would be in so much pain and have so many problems from this surgery. I have spurs on my neck with degenative disks and spinal stenosis in the lower lumbar as well as broken off calcium deposits, arthritis and degenerative disks.

  • #2
    Are you using anything for pain now? My son uses a combination of methadone, neurontin, and tylenol/codiene for his spinal pain. He also has used a pain patch in the past which helped... cant remember which one. It helped the pain, but he did NOT like the feeling of the patch removal so we felt it wasnt worth continuing. (all prescribed by a pain doc).

    We too have discussed removing hardware at some point in time, though we hope to put that off as long as possible since he is only 8 yrs old.

    Heidi
    Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

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    • #3
      Pain Management

      I had the Harrington Rod in my back for 19 years and when I decided to take it out (done in 2000 a procedure the dr. said would take 30 to 45 minutes) took 4 hrs. and he only managed to take out 3-4 inches on the top. It was so fused to my spine that he didn't want to risk taking the part that apparently wasn't giving my the problem. I can't even imagine yours being in so much longer if it would even be possible! But I am in Pain Management for 2-1/2 years and I too, am on methodone - an extremely mild dose 20 mg per day. I take 5 in the am; 5 in the afternoon and 10 before bed along with celebrex and that has helped me so so much. I was in such agony I felt it wasn't worth going on in this type of pain. I also never knew years later how I would be but at the time when they say they can help, I would do anything to get my spine straight. I was 27 when I had it done in 1981 and I was actually painfree until 1997. It was truly a miracle for me as I suffered with back pain since I was 11. As far as the patch that Heidi referred to.... if it is the Duragesic (Fentanyl) Patch, I had severe side effects. I used it for about four or so months and had every side effect immaginable; severe panic attachs, chills, weight loss, no appetite, etc. and wound up in the hospital for five days with a blood clot on my lung from it. All went away but it was just awful and I didn't feel it was really helping with the pain. The only thing that helps me is the methodone. I did NOT want to take it for fear of just the name but after careful consideration and research, I thought I would try it and it's 2.5 years now and I'm very very glad I did. Hopefully you can find the right choice too. Pain is a terrible thing as we all have/are experiencing. What works for one, might not work for another, but I thought that I would let you know what I went through and how I found some relief. I also practice "The Alexander Technique" a postural method that helps me with pain. I have been doing this as long as I'm taking the methodone so the combination for me is working. (look it up on the website - I swear by it). Good luck and I hope you get some comfort soon. LYNN
      Last edited by Jacque's Mom; 05-23-2005, 03:42 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)

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      • #4
        Thanks for the advice Lynn. I have my tens unit and the doctor also wants me to try acupuncture. I'm a little depressed as I knew in my heart that I wasn't going to get a miracle but was holding out for one. I've been in denial of the pain for a few years and just couldn't hide it anymore.

        I had my surgery performed by Dr. Keim at Presbyterian Hospital also in 1973.

        Kim
        Last edited by kg5939; 05-24-2005, 08:24 PM.

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        • #5
          I'm only taking motrin right now Heidi. I was taking Bextra but stopped after the FDA warning. It didn't do anything for me anyway. My doctor did mention if the tens unit didn't work using a morphine patch. I really don't want to start with drugs right now.

          Sounds like your son has been through alot. I don't blame you for not wanting his hardware removed. I can imagine how much it hurts you to see him in all the pain. Little guys just shouldn't have to go through it. My younger son is almost 8 and has learning disablitlies and I hate to see how he struggles.

          Best wishes,

          Kim

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          • #6
            acupuncture

            I had acupuncture for about 3 months, and it was wonderful. If I could get 3 visits a week and then taper off I would not need much pain meds. The only problem is that my insurance would not pay for it, so my family put out 600. dollars and I went until the money ran out. Some will offer so many visits for a set amount. It is worth the try. It would be great to have insurance pay for it. It also was a life saver for me when I would have severe muscle spasms and swelling in my leg and feet, and they also had this very powerful massage machine that felt like a smooth sander that got rid of a lumpy muscle that had been stubborn for months. The lumps in the muscle's that seem to be due to tightness and spasms, cause me to have circulatory problems and when a massage therapist or acupuncturist gets rid of it it's like a miracle. I actually felt like a normal person, pain free, for an hour when I left the acupuncturist office.
            If I were wealthy, or had insurance to pay, I would go to acupuncture (a good one) atleast a couple times a week.

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            • #7
              pain management

              hi. i am 40+ years post op with no hardware. i have stnosis, herniated discs, spurs, muscle spasms etc. all the stuff so many of us are having after all these years. i use muscle relaxants and vicodin, have had trigger point injuections, and epidurals. latest is lidoderm patches. they go over the painful area for 12 a day, and help the pain dramatically for me. might be worth asking your doctors about. good luck

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              • #8
                pain too

                Originally posted by kg5939
                I went to the pain management doctor today who informed me he is unable to give me epidural shots of cortizone which my doctor prescribed. He said to try acupuncture to see if it helps. He is trying to get approval from my medical insurance for a teuns unit (sp?) which may help with some of the pain.

                My other alternative is to have all my hardware removed which he does not recommend. I won't go for it anyway. It's been there 33 years and it's staying there.

                I never had any idea I would be in so much pain and have so many problems from this surgery. I have spurs on my neck with degenative disks and spinal stenosis in the lower lumbar as well as broken off calcium deposits, arthritis and degenerative disks.
                I have been having alot of pain too lately and i have tried the tens unit and if you have it on the right settings, if its not on the right setting it feels like it's just shocking you not relaxing muscles.so the right setting feels good but as soon as it is off the pain returns, so it's only a temporary relief. I am 26 years old and have scoliosis since i was a baby. -
                Jenny

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                • #9
                  I have been having a lot of pain below fusion since last oct i have a worn facet joint the pain was going down my leg. I decided to try acupunture i have had about 3 sessions so far and i now i have no pain.

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                  • #10
                    Living in daily pain

                    I was diagnosed with scoleosis at the age of 20. I didn't know I was suppossed to look after it because no one told me it would continue to worsen. I now have a 30 degree S curvage. My pelvis is higher on one side. Frankly I am in so much pain there are days I just want to go to sleep and not wake. my family doctor is useless and tells me to take over the counter tylenol which doesn't touch the pain. I am going to a specialist in Feburary but my family doctor told me it is a waste of time because he won't do surgery because I am to old at the age of 41. I am looking for support from anyone in my age bracket.

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                    • #11
                      Pain management

                      Hi Glitter

                      I am almost 40 and have congenital fused vertibrae in my neck. My condition is different but I may be of some help. I was also told to live with the pain and given prescription muscle relaxers and anti inflamitorys. I now see a Chiropractor and have been med free and almost pain free for 10 years. The chiro has done some reversal to my spine but is mostly management of pain at this point. I started by going 3 x wk for 1 month then 2 x then 1once now I maintain at every 3 weeks. My doc uses a drop table.

                      I did go thru 3 docs before I found the one right for me. Some people swear by chiropractors and others do not like them but it may be an option for you
                      from CT, USA
                      6 year old daughter diagnosed 7/06 33* T9

                      Spinecor 8/06 - 8/2012
                      8/06 11* 3/07 5*-8/07 8*-2/08 3*
                      10/08 1* 4/09 Still holding @ 1*
                      10/09 11* OOB 4/10 Negative 6*
                      10/2011 Neg.11* IB 11yrs old 0 rotation
                      4/2012 12* OOB 0 rotation
                      8/2012 18* OOB for 2 weeks. TSLO night time
                      2/2013 8* OOB 3 days TSLO nightime
                      3/2014 8* Out of Brace permanently

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                      • #12
                        If you live in the right county in california you can get medical marijuana which I use for pain management.

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                        • #13
                          I had one doctor tell me that he couldn't give me injections. I went to another better pain doctor (I have a 1 3/4 hour drive to his office), and he has been able to give me the injections I needed. He is a rehab doctor for brain and spine injuries. He does mostly just spine problems. Try to find one that deals mostly with the spine if you can. I tried a tens unit and the vibration cause me more pain. I use a heating pad and also exercise at a therapy pool that is kept at 90 degrees.
                          T12- L5 fusion 1975 - Rochester, NY
                          2002 removal of bottom of rod and extra fusion
                          3/1/11 C5-C6 disc replacement
                          Daughter - T7 - L3 fusion 2004

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                          • #14
                            TENS unit

                            I tried a tens unit and the vibration cause me more pain
                            rainbow2010

                            I have a lot of experience with the TENS unit. If you feel the vibrations/tingling then it is incorrectly set. One is supposed to set the device to just below the setting where one feels the impulses.
                            Even though I've had surgery 5+ years ago I've used the device for other issues like muscle aches and injuries. The manual is very handy and is a great source for what to expect.

                            I was fortunate in that my prescribing pain doc took the time to give me tips and could be reached by e-mail.
                            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

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                            • #15
                              I am very sensitive to vibrations. My kids were never allowed to have their stereos up loud. Even riding in the car bothers me a lot. I had a physical therapist place the tens unit on me.
                              T12- L5 fusion 1975 - Rochester, NY
                              2002 removal of bottom of rod and extra fusion
                              3/1/11 C5-C6 disc replacement
                              Daughter - T7 - L3 fusion 2004

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