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Need advice about pain and pain management! Crying time!

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  • Need advice about pain and pain management! Crying time!

    It's been a circus with the pain meds around here ...

    I was discharged from rehab with Vicodin, which I can't even take. The discharge nurse told me to call my PCP's office for something else, so like an idiot I did. My PCP changed it to Darvocet, which didn't even come close to relieving the pain. On Monday he changed it again to Percoset every 6 hours, which still wasn't enough to let me walk around the house, let alone down the street. It was horrible. I went back Thursday, saw another doctor since my PCP was out, and he said I could take the Percoset every 4 hours, and added Oxycontin, which was exactly the regimen in rehab. He also personally called my surgeon's office and told them THEY need to be managing my pain meds (which they had told me they wouldn't do since I had gone to my PCP - like the rehab nurse said to do).

    As it turned out, that was WAY too much medication, and after more than a day of dizziness and nausea and no appetite, I'm finally trying to figure out what I should take. I figure I'll leave the oxycontin alone. Maybe taper down on the Percoset from 4 to 5 to 6 hours? I was also discharged with Robaxin, which isn't doing anything for the muscle spasms, and it feels like my back is a cramped up rock. Interestingly, the surgeons office said they don't even recommend muscle relaxants post op.

    I want to go walking! I want to get out there and loosen up, get everything moving, make some progress! I feel frozen, can't even sit for more than a few minutes! I know it sounds like I'm whining, but I'm just frustrated and don't know what to do or what to expect. Help!
    Juliet, age 57
    37˚ lumbar and 35˚ thoracic with rotation
    Diagnosed at age 11 and untreated.
    Total degeneration of disc at L4-5, spondylolisthesis at L4, L5 sacralized.
    Surgery on 10/26/10
    Dr. Matthew Geck, Seton Spine & Scoliosis, Center, Austin, TX.
    University Medical Center @ Brackenridge Hospital.
    Posterior fusion of T11-S1, part minimally invasive; TLIF at L4-5.

  • #2
    What dose of Oxycontin? Maybe it was too much. You have to find your own balance, somehow. With Oxy, you should be taking just that and using the Percocet for breakthrough, if the oxy isn't enough.
    Stephanie, age 56
    Diagnosed age 8
    Milwaukee brace 9 years, no further treatment, symptom free and clueless until my 40s that curves could progress.
    Thoracolumbar curve 39 degrees at age 17
    Now somewhere around 58 degrees thoracic, 70 degrees thoracolumbar
    Surgeon Dr. Michael S. O'Brien, Baylor's Southwest Scoliosis Center, Dallas TX
    Bilateral laminectomies at L3 to L4, L4 to L5 and L5 to S1 on April 4, 2012
    Foramenotomies L3 through S1 in August 2014

    Comment


    • #3
      When I left rehab, they had me on Oxycontin 10mg ER q 12 h and oxycodone 10 mg q 4 h. They apparently expected me to be just fine changing abruptly to Vicodin only. After struggling on Darvocet over the weekend, the combination of Percoset and Oxycontin was just too strong, and now I'm trying to figure out what to take - Oxycontin alone, or Percoset less frequently. I want to take as little pain medication as possible, while at the same time being able to function. I guess I'll just talk to the surgeon's office on Monday and find out what I'm supposed to do, because I sure don't know.
      Juliet, age 57
      37˚ lumbar and 35˚ thoracic with rotation
      Diagnosed at age 11 and untreated.
      Total degeneration of disc at L4-5, spondylolisthesis at L4, L5 sacralized.
      Surgery on 10/26/10
      Dr. Matthew Geck, Seton Spine & Scoliosis, Center, Austin, TX.
      University Medical Center @ Brackenridge Hospital.
      Posterior fusion of T11-S1, part minimally invasive; TLIF at L4-5.

      Comment


      • #4
        At the same stage as you are at now, I was on 40mg Oxycontin x 2 daily, plus Endone (quick release oxy) 6 hourly and I was told to take paracetamol with the Oxycontin because it makes the oxy work in two different ways. It took care of my pain though the doctor said it was a "horse dose." I've since been told it wasn't!

        I didn't start cutting down until the 6 week mark. Ok, I became dependent on the oxy, but I kept cutting back slowly week by week until I was off it all. You are very early to be off the oxycontin, though you may have a good reason why you don't want to take it?

        What I'm trying to say is, I was taking much more than you are at the same stage, and after the 3 week mark, it kept the pain completely under control. I was able to walk every day, extending the distance daily. I feel if you can get that pain under control to enable you to walk, you'll recover more quickly. Just my thoughts.
        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


        • #5
          I agree with Jennifer, you're so early in recovery to be cutting back. Reading your post made me angry with your surgeon AND PCP's office. You shouldn't have to figure it out on your own!
          __________________________________________
          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


          • #6
            Thanks, guys ... I'm pretty upset too. I feel like I've been abandoned by my doctor. But at least I don't feel like a whiny baby anymore.

            I guess the reason I don't want the Oxycontin is because now it makes me feel so dizzy, nauseated, and caused a weird pressure feeilng and ringing in my ears. I'll take what I have to, but it seems like around here the big deal with the doctors here is cutting down on meds. Home on Vicodin? Please.

            I guess I'll stick with the four-hourly Percoset until Monday, and see what the surgeon's office wants me to do. I hope they don't want me to come in, because I don't have a ride and the thought of riding in a taxi fills me with dread.
            Juliet, age 57
            37˚ lumbar and 35˚ thoracic with rotation
            Diagnosed at age 11 and untreated.
            Total degeneration of disc at L4-5, spondylolisthesis at L4, L5 sacralized.
            Surgery on 10/26/10
            Dr. Matthew Geck, Seton Spine & Scoliosis, Center, Austin, TX.
            University Medical Center @ Brackenridge Hospital.
            Posterior fusion of T11-S1, part minimally invasive; TLIF at L4-5.

            Comment


            • #7
              I agree with Debbe -- what's wrong with these people?!? At your stage post-op, I was taking 20 mgs. Oxycodone every 12 hours and 2 Percocets (I forget dosage) every 4 hours. Fortunately I have a strong stomach and tolerated everything well. At some point I also started taking Valium at night for muscle spasms. I felt like all I was doing was popping pills, but I could not have functioned without them. You need to be very assertive with your surgeon and/or PCP about pain relief because you really need to move around to hasten the fusion and healing.

              I was also referred to a pain management specialist by my physical therapist at around 3 months post-op. There are not a lot of these specialists around, but I did find one who helped me maintain pain control and taper off the narcotics when I was ready (at around 8 months).
              Chris
              A/P fusion on June 19, 2007 at age 52; T10-L5
              Pre-op thoracolumbar curve: 70 degrees
              Post-op curve: 12 degrees
              Dr. Boachie-adjei, HSS, New York

              Comment


              • #8
                Juliet, you aren't even one month post-op - you need to be on the meds. I am in the process of going through my pre-surgical testing (surgery on 12/7/10) and one of the doctors I saw on Thursday said "while this is a big surgery and painful recovery, you must stay on top of your meds to keep the pain under control". I have been with a pain management doctor for eight years, and he will be in touch with Dr. Boachie's office (or their pain management team) in order to all be on the same page. I doubt a PCP doctor even knows the magnitude of this surgery. I would insist your surgeon help manage your pain. If he doesn't, insist they recommend a good pain management doctor in your area that you can go to. I'm sorry you are hurting. I'm be keeping you in my prayers. 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


                • #9
                  Juliet, I am so sorry to hear you are struggling with the pain meeds. I had to adjust my medication several times before I got things under control.

                  I use Dr. Haro with Austin Pain Management Associates and he has been helpful with both pre and post surgical pain control. I highly recommend him. Dr. Geck's office has implied that Dr. Haro can prescribe a broader range of drugs than they can???

                  I could not take the oxy stuff,,made me sick. I now wear a fentanyl patch and take dilaudid. The pain doc wants me to start decreasing the dilaudid as soon as I can.
                  Chris, Austin, TX
                  age:58
                  80 degree thoracic/36 degree lumbar curves
                  Surgery 8/2/10, Anterior Cervical Decompression/Fusion
                  C4/5, C5/6, C6/7
                  New Surgery date 10/25/2010, T-2 to Pelvis, posterior
                  Dr. Matthew Geck, Seton Spine and Scoliosis Center

                  Comment


                  • #10
                    Thank you folks for the recommendations to pain managment! I think maybe Dr. Geck's office doesn't want to deal with it because then they'd have to put a pain specialist on staff, so many of their patients are dealing with pain issues.

                    JChris, you're the second person to recommend Dr. Haro to me; my other friend has been seeing him for almost 10 years for chronic/terminal issues. I'll call him on Monday and see if he can help. I was only given enough meds to last over the weekend, so somebody has to help me somehow. You'd probably beat me in those races now! I'm so happy you're doing well.
                    Juliet, age 57
                    37˚ lumbar and 35˚ thoracic with rotation
                    Diagnosed at age 11 and untreated.
                    Total degeneration of disc at L4-5, spondylolisthesis at L4, L5 sacralized.
                    Surgery on 10/26/10
                    Dr. Matthew Geck, Seton Spine & Scoliosis, Center, Austin, TX.
                    University Medical Center @ Brackenridge Hospital.
                    Posterior fusion of T11-S1, part minimally invasive; TLIF at L4-5.

                    Comment


                    • #11
                      Juliet,
                      I'm so sorry you are going through this by yourself. OMG, the pain after this type of surgery can be so intense, you should absolutely have the support of your surgeon. Your PCP will not be appropriate until after several months have passed. This is ACUTE PAIN, and you need BIG DRUGS. I would suggest a smaller dose of Oxycontin with Percocet in between for breakthrough pain. I was on this regimen for several months although lots of people were able to wean sooner. If you can't move due to pain, it will slow your recovery. I'm disappointed in your surgeon's office for treating you in this way. Don't even think about weaning until you feel ready, it's not a race. Good luck, and I hope you get the help you need this week ;-)))
                      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


                      • #12
                        Thanks for the suggestion, Kristy ... since I can't talk to my surgeon until Monday, I think I'll try the Oxycontin ER for overnight and see what happens. The first time I took it along with a Percoset, and the room was spinning, but alone maybe it'll work without making me sick. No harm in trying; I can always go back to what I'm doing now until Monday.

                        I appreciate everyone letting me know that the pain isn't in my imagination, or that I have to "be strong and tough it out." I don't understand doctors' attitudes toward pain treatment at all! I was so happy that Dr. Fincken at my PCP's office took me seriously, especially since I didn't really expect there was anything he could do.

                        Onward! Through the blessed fog! Tomorrow will be a better day!
                        Juliet, age 57
                        37˚ lumbar and 35˚ thoracic with rotation
                        Diagnosed at age 11 and untreated.
                        Total degeneration of disc at L4-5, spondylolisthesis at L4, L5 sacralized.
                        Surgery on 10/26/10
                        Dr. Matthew Geck, Seton Spine & Scoliosis, Center, Austin, TX.
                        University Medical Center @ Brackenridge Hospital.
                        Posterior fusion of T11-S1, part minimally invasive; TLIF at L4-5.

                        Comment


                        • #13
                          Juliet,
                          I haven't had my surgery yet, so I know nothing about the pain medications. I intend to ask a few questions at my pre-op appointment on Wed. about controlling the pain medications since I have no experience with pain medications and seldom even take a Tylenol. I just don't want to be turned lose with bottles of strong pain medications and little instructions which it seems to be the case for most on this forum. Also, does one start with the laxatives immediately to avoid constipation or is it inevitable regardless? I hope you find relief soon!
                          Karen

                          Surgery-Jan. 5, 2011-Dr. Lenke
                          Fusion T-4-sacrum-2 cages/5 osteotomies
                          70 degree thoracolumbar corrected to 25
                          Rib Hump-GONE!
                          Age-60 at the time of surgery
                          Now 66
                          Avid Golfer & Tap Dancer
                          Retired Kdgn. Teacher

                          See photobucket link for:
                          Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
                          Before and After Picture of back 1/7/11
                          tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
                          http://s1119.photobucket.com/albums/k630/pottoff2/

                          Comment


                          • #14
                            constipation prevention

                            Hi Karen,

                            I would definitely try to have the nurses help you in the hospital w/ constipation. I asked for a dulcolax suppository about the 4th day post-op which was of a small amount of help, but I ended up at home after 6 days in the hospital significantly constipated and uncomfortable.

                            I would recommend you buy a jug of Miralax (available generic for less $) to have available when you get home, and I would start taking it immediately. I also used Senokot-S and colace (stool softener). At first my abdominal muscles were weak after a long surgery and 6 days of severe nausea and vomitting, which makes constipation even more difficult and painful to deal with. Proactive prevention as much as possible from your early post-op days will help tremendously.

                            Good luck,

                            Gayle
                            Last edited by leahdragonfly; 11-14-2010, 10:24 AM.
                            Gayle, age 50
                            Oct 2010 fusion T8-sacrum w/ pelvic fixation
                            Feb 2012 lumbar revision for broken rods @ L2-3-4
                            Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


                            mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
                            2010 VBS Dr Luhmann Shriners St Louis
                            2017 curves stable/skeletely mature

                            also mom of Torrey, 12 y/o son, 16* T, stable

                            Comment


                            • #15
                              hi Juliet
                              i don't understand why, so soon after surgery, your surgeon doesn't take more responsibility for your post op treatment...
                              i also don't understand why you were given such a low dose of oxy...i have not had surgery..yet..and have both 20 mg and 30 mg of oxycontin for pain...i take it as infrequently as possible, and try to stay with just the hydrocodone i have, but some days, like when it is cold and wet outside, usually require more medication...

                              if you eat before you take the meds, it should help with the nausea, room spinning, etc...

                              i think you need to talk with your surgeon or his staff...
                              it is just my opinion, but i think the dose you were sent home with doesn't sound sufficient to treat post op pain!

                              hope you feel better soon
                              jess

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