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  • #16
    Allison,

    I was on the same pain killers but take valium in the daytime and zaneflex at night time. The first couple of weeks I would wake up at night with the sheets soaking wet like someone poured water on them. I was hot so my husband would uncover me and turn the fan on. Then I would be cold so he'd cover me up and it would keep going and change minute to minute. Thank god everyone was so patient with me. They would laugh but it's misserable. Hang in there though because it does get better! I still have hot and cold flashes but I don't sweat like I was a few weeks ago. Hope you start to feel better soon:O)
    Susan

    Diagnosed at 10, Boston brace from 11-13 yrs old.
    50* Lumbar w/ 5 centimeter shift to the left and slight rib hump...
    Surgery Date: April 15 and April 22, 2009
    X-LIF approach for disc repair L5,L4,L3,L2
    Posterior Approach for fusions L5-T5
    Dr. Fox @ Naval Medical Center Portsmouth
    Nice and straight now!!!!!

    Comment


    • #17
      cutting back on meds

      I've decided to see what happens when I cut back on my meds. I'm going to go at this really slow as I can't afford a meltdown at this point in my life! For those of you with experience on narcotic withdrawal, how slowly should I take it? Currently, I take 6-7.5mg Percocet and 2-10mg Oxycontin per day. I was thinking maybe cutting out one Percocet per day and then cut the Oxy. That would mean in 8 days I would be med free. Is that too quick? Just about right? Too slow? What can I expect physically? I'm going to do some poking around on the internet but thought first hand experiences would be good too.
      I'm a little tired of my friend throwing comments into conversations about being concerned that I'm "addicted". DUH! Me too! I usually take 2 Percocet in the morning and only took 1 this morning. The only problem so far is my back is KILLING ME! Oh, well. I'm tough, I can do it! I think I'll tape a piece of paper with that on it to my computer screen for future reference!
      Becky, 46 years old
      Diagnosed at 13 with mild scoliosis
      Ignored until 448/07
      Left thoracic 49* T5-T11
      Right thorocolumbar 60* T11-L4
      Surgery Monday, June 9, 2008 Oklahoma Spine Hospital
      Fused T-10 to L-5
      14 titanium pedicle screws
      Corrected to approx. 10* YEA!!!
      Email

      Comment


      • #18
        cutting back on meds!

        Becky,

        Here's my thought and it is just that......Our Doc's prescribe these meds for a reason and most people will never under go surgeries as complicated as what we have been through. I am not sure how for out from your surgery you are but If you try cutting your meds and your back is hurting that is a clear indication that you still need it. Do not listen to your friend who may have good intentions of course but can't relate to the pain that you are going through. Only you know how you feel. As for being addicted. If you do not have an addictive behavior you aren't going to get addicted especially since you are being so conscience about it. Good luck and I hope all works out for you! Take care and do what works best for you!
        Susan

        Diagnosed at 10, Boston brace from 11-13 yrs old.
        50* Lumbar w/ 5 centimeter shift to the left and slight rib hump...
        Surgery Date: April 15 and April 22, 2009
        X-LIF approach for disc repair L5,L4,L3,L2
        Posterior Approach for fusions L5-T5
        Dr. Fox @ Naval Medical Center Portsmouth
        Nice and straight now!!!!!

        Comment


        • #19
          Yes, I believe your approach would be too quick.

          I became dependent on Percocet and long-acting Oxy after using them for several months, and I withdrew pretty slowly. I think I did everything in 1-week increments, cutting out the short-acting Percocet first. I gradually cut back on the number of them, then starting cutting them in half, then cut back on the number of them as well. I had an unpleasant couple of days (no appetite, headachy) when I stopped the Percocet altogether but it passed pretty quickly for me. When I was down to just 2 long-acting Oxy's a day, I cut out the nighttime dose first for a few days, then stopped the daytime dose. It wasn't as bad as stopping the Percocet although I did feel weird and spacy for about 3 days. I also remember having restless legs in bed for a few days, which I haven't had since, although I do still have trouble sleeping (seems to be a very common thing with fusion patients).

          There are non-narcotic prescription meds you can take for pain (like Ultram), but most of them carry their own risks of dependency. For me, the dependency problem was a small price to pay to keep me functioning while I healed. But since you're over a year post-op, I would be thinking about cutting way back also. Talk to your doc about alternate means of pain relief.
          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


          • #20
            I went from Oxycontin and Percocet to 7.5 hydrocodone which was no problem and a muscle relaxer. I started with 12 of hydrocodone and am down to 10 & 1/2. I tried to go faster than that a month ago and paid for it for 10 days. So I'm going really, really slowly to get down on this. Dr. Lenke didn't seem to be concerned where I was seeing as what I'd had done. I imagine everyone and docs are different on this. Janet
            Janet

            61 years old--57 for surgery

            Diagnosed in 1965 at age of 13--no brace
            Thoracic Curve: 96 degrees to 35 degrees
            Lumbar Curve: 63 degrees to 5 degrees
            Surgery with Dr. Lenke in St. Louis--March 30, 2009
            T-2 to Pelvis, and hopefully all posterior procedure.

            All was posterior along with 2 cages and 6 osteotomies.

            Comment


            • #21
              Originally posted by skoshi314 View Post
              I've decided to see what happens when I cut back on my meds. I'm going to go at this really slow as I can't afford a meltdown at this point in my life! For those of you with experience on narcotic withdrawal, how slowly should I take it? Currently, I take 6-7.5mg Percocet and 2-10mg Oxycontin per day. I was thinking maybe cutting out one Percocet per day and then cut the Oxy. That would mean in 8 days I would be med free. Is that too quick? Just about right? Too slow? What can I expect physically? I'm going to do some poking around on the internet but thought first hand experiences would be good too.
              I'm a little tired of my friend throwing comments into conversations about being concerned that I'm "addicted". DUH! Me too! I usually take 2 Percocet in the morning and only took 1 this morning. The only problem so far is my back is KILLING ME! Oh, well. I'm tough, I can do it! I think I'll tape a piece of paper with that on it to my computer screen for future reference!
              Becky,

              I'm no expert, so maybe you should check with a professional, but here is what I did. I started out on 14 pills per day. 1 long acting Oxy 2x a day, and 2 short acting Oxy's every 4 hours. For one dose, I'd cut down to 1 short acting pill for 3-4 days or even longer. Then alternating every 4 hours for the short acting pills, I'd take 2 for one dose, and then 1 the next dose. Once I got used to that, I cut back 1 short acting pill every 3-4 days so that I ended up having only 1 short term pill every 4 hours. Then I stretched the 4 hours to 5 hours, 6 hours, etc. I didn't get into any trouble with withdrawl until I was down to the 2 long acting pills and 1 short acting pill. When I cut out that last short acting, and started spreading the long acting pills longer than 12 hrs, I got the chills, sweats, body aches, etc. You cannot cut the long acting pills because you could overdose. I should have asked the doctor for other pills that I COULD cut, but I couldn't cut my short acting pills either--they were capsules.

              Once I as down to the 2 long acting I went back up to 3 short acting per day and no long acting. That way I could spread the doses out longer and longer. It took me about 3 weeks from this point to totally get off. It wasn't too fun, but I did it.

              Good luck, and like I said, maybe get professional advice on how to cut down.
              __________________________________________
              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


              • #22
                I do not have an addictive personality, yet I suffered withdrawals from Oxycontin. I think we are all different. I came home from hospital on 80 mg Oxycontin and 8 x 5mg Endones (quick acting) per day. I had no pain so lowered my intake of Endones first, until I'd stopped them altogether. Then, at 5-6 weeks, I began lowering my Oxycontin. My GP gave me scripts for 15mg, 10mg and 5mg. I went from 2 x 20mg twice a day to 1 x 20mg twice a day with no problems and no pain, then gradually reduced to the 15mg, then the 10, then the 5mg. The day I took my first 5mg I had nausea, stomach cramps, diahorrea, dizziness and emotionally, fell into a black hole. I still had no pain, so was determined to get off the drugs and so stuck to the 5mg and waited. When I ran out of 5mg, I didn't renew my script. I forget now the time frame, but it wasn't rapid, but I had big problems. But I had no pain, so it was obviously the time to stop.

                To me, your plan is a little too fast, but then your body may well handle the fast drop. But having been through withdrawals, for 3-4 weeks plus dizziness for 7-8 weeks, I would advise you to go very slowly, even what seems excessively slowly, to avoid that hell.

                I should mention the dizziness may not have been related to the withdrawals, although they started the same day. My surgeon felt it was related to the antibiotics given during surgery.

                If you're in pain, I would wait another week or two and try again. No point in hurting, and not sure if this is correct, but I've been told that you don't heal as quickly when you're in pain. Good luck!
                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


                • #23
                  Pain Meds

                  Hi Becky,
                  Sorry to hear you are still having pain. Makes me a little nervous. I was told by one of the surgeons that I saw that one of the risks of surgery is that it is unsuccessful as far as alleviating the pain and may possibly have to be done over again. I sure do hope that isn't the case for you. However, the surgeon I did decide to go with is a very well known surgeon in my area and has a very high success rate, so I'm trying to think positively as far as that goes! Hope you can get things figured out with minimal problems. God Bless!

                  Debbie

                  Comment


                  • #24
                    All,
                    I basically quit taking all meds a couple of days after I got home from the hospital. But I do have a high tolerance for pain. I didn't like the way I felt. And I couldn't handle the constipation. I love prunes, thank goodness! I take meds when I can't handle the pain, and usually only at night. I'm one year post-op from first surgery, fusing T2 to S2, and only three months from a revision, only an 18" scar! When I begin to hurt, I stop what I'm doing! I have a tendency to get focused on whatever, and that can get me into trouble pretty quick. I have doctor's orders to "do nothing" and that is bascially what I'm doing. Boring, but not much pain. I walk 1.5 miles each day on the treadmill, walk around the neighborhood, and do my PT exercises. I still tend to lean forward, but I think that as the day goes on, my back muscles get pooped out. Those muscles are doing things they ain't never done before. I am riding on the back on hubby's Harley, and that gives me a lot of peace. Like I'm doing something NORMAL. I do realize everyone's pain threshold is different. I firmly believe I know my body best. And I don't want to do anything to hurt it. Take one day at a time.
                    Lesley
                    Les, Biker Babe, age 56 (at time of first surgery)
                    Fused T2 to S2, posterior only, 8 Apr 08
                    T3 fracture repair and revision, Mar 09
                    Broke left lower rod and pelvic screws removal, Dec 09
                    Scheduled to remove all hardware, replaced everything instead due to non-fusion, Nov 10
                    Remove top 2" of rods and screws, Feb 14
                    Pre surgery degrees: L40, T45
                    Post surgery degrees: L8, T10

                    Happy, joyous and pain-free!
                    Surgeon: C Timothy Floyd, MD, Boise Orthopedic Clinic

                    Comment


                    • #25
                      Originally posted by lapieper View Post
                      All,
                      I basically quit taking all meds a couple of days after I got home from the hospital. But I do have a high tolerance for pain. I didn't like the way I felt. And I couldn't handle the constipation. I love prunes, thank goodness! I take meds when I can't handle the pain, and usually only at night. I'm one year post-op from first surgery, fusing T2 to S2, and only three months from a revision, only an 18" scar! When I begin to hurt, I stop what I'm doing! I have a tendency to get focused on whatever, and that can get me into trouble pretty quick. I have doctor's orders to "do nothing" and that is bascially what I'm doing. Boring, but not much pain. I walk 1.5 miles each day on the treadmill, walk around the neighborhood, and do my PT exercises. I still tend to lean forward, but I think that as the day goes on, my back muscles get pooped out. Those muscles are doing things they ain't never done before. I am riding on the back on hubby's Harley, and that gives me a lot of peace. Like I'm doing something NORMAL. I do realize everyone's pain threshold is different. I firmly believe I know my body best. And I don't want to do anything to hurt it. Take one day at a time.
                      Lesley
                      Leslie,

                      I am in awe of you getting off pain meds that quickly! I did the prunes thing too--my mother made me stewed prunes which I ate daily with plain yogurt, plus a nice big shot of prune juice in the morning. Along with beans, high-fiber cereal, I had no problem in the bathroom dept.

                      I'v got to learn that when I'm not feeling so well I should just rest. I tend to have a hard time with that one. I'm having muscle spasms for about a week now that I wish would just GO AWAY.

                      Good for you that you can do things that you love. I'm happy for you.
                      __________________________________________
                      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


                      • #26
                        Hi all!

                        I haven’t been on here in ages but due to my insomnia (it’s 3:00 in the morning) I felt compelled to check here to see what others have to say regarding withdrawal of pain meds. I am 4 months and 3 months out from 2 surgeries (see my signature) and am off the Dilaudid. I weaned off slowly following Dr.’s orders. I cut the 2 mg tabs in ½’s then 1/4’s over the course of a couple weeks. Whew! The diarrhea has subsided, but this insomnia…wow! I was not expecting it at all! I sleep for possibly 2-3 hours total at night and take no naps during the day. I am walking a lot and stay busy during the day in hopes of being so tired that I will sleep but so far it’s been two weeks and I just can’t sleep. It’s not the falling asleep, it’s the staying asleep that’s a problem. I do not tolerate Ambien (big time hallucinations.) And I seem to be suffering from RLS. Just a bizarre compulsion to move my legs. Frustrating! I am hoping this will run its course soon!

                        Now I’m working on tapering off the Morphine gradually (one 15 mg every other day.) I’ll be done on August 15. There are just so many hurdles to this surgery/recovery thing aren’t there?

                        I do still have that ‘sunburned’ skin feeling over my shoulder blade area. It was soooo bad those first weeks after surgery, it was nearly unbearable, like having a bad sunburn, then standing under a hot shower, scrubbing your skin with sandpaper. OUCH! When I was in the hospital following surgery #2 I told my Dr. about it and he prescribed a Lidoderm (5% solution) patch. They are 5” x 7” and come in a box of 30. We cut one in half, one half over each shoulder blade area at night and it helped sooo much. (the dosage is 12 hours on 12 hours off) I did that every night, then every other night, now it’s only occasionally as the pain dictates.

                        I currently do not notice my back much at all, hallelujah! I haven’t been able to say that for 30 years! I can’t say that I have much pain at all…mostly only at the top of my fusion when my muscles are tight at the end of a day when I have over done it (which is every day lol!) I just lay down for 10 minutes and I’m good to go again. I do take an occasional Flexeril.

                        I am finally at the point that I can say if given the choice I would have this surgery again. Yea!
                        Julie - 51 yrs old

                        Dx'd 1973 - 43* thoracic curve / rotation
                        Wore Milwaukee brace 1973 - 1979
                        Pre-surgery: 63* thoracic / 52* lumbar curves


                        Surgeries: P - March 16, 2009 - Fused T3-S2 with pelvic fixation
                        A -April 14, 2009 - Fused L5-S1
                        Achieved +70% Correction
                        Dr. Khaled Kebaish, (and team) Johns Hopkins Hospital, Baltimore


                        Standing x-ray
                        New Spine 03/19/2009
                        New Spine Lateral 03/19/2009

                        Comment


                        • #27
                          Julie, do you think the insomnia is related to withdrawals? I have read that many people on this forum suffer from insomnia for some time after surgery.

                          I didn't but I did have withdrawals. Through it all, I slept well, night and also day for about the first 3.5 months. So I can't relate to your insomnia as a symptom of withdrawals. But we are all so different. I'll be interested in the experiences of others.

                          Not being able to sleep is no fun and I'd be rushing for the nearest Dr. for a sleeping pill, if I hadn't slept for so long.

                          In every other way, you seem to be doing extremely well, arriving at the point of knowing the surgery was well worthwhile - congratulations!
                          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


                          • #28
                            I had restless legs for just a few days after stopping Oxycontin, but I continue to have sleeping problems. I take Melatonin, which doesn't do much, and Ambien very occasionally. I'd say about every 3 or 4 nights I get a really good night's sleep.
                            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


                            • #29
                              sleep trouble.....

                              Julie,

                              Wow your doc's had you on some heavy meds....Dilaudid and Morphine! That must have kept you pretty comfy and loopy I would imagaine! I am sure it's not easy weening yourself off the really heavy meds. I'm sorry to hear that your having so much trouble sleeping. From what I have read throughout this site it seems to me that many people have issues with sleep once they stop their meds. Think about it though.....all those meds make us sleep and we fall asleep and the body gets use to that. You have to get your body use to going to sleep on it's own. Sounds like your on the right track though, keeping yourself busy and moving during the day. With little pain to! I wish you didn't still have that sunburnt feeling though. I had it for a couple of weeks after surgery but it went away ratehr quickly. At least the patches help. I used those prior to my surgery and they worked great for me.

                              Good luck with getting to sleep, I hope things settle down for you soon!!!
                              Susan

                              Diagnosed at 10, Boston brace from 11-13 yrs old.
                              50* Lumbar w/ 5 centimeter shift to the left and slight rib hump...
                              Surgery Date: April 15 and April 22, 2009
                              X-LIF approach for disc repair L5,L4,L3,L2
                              Posterior Approach for fusions L5-T5
                              Dr. Fox @ Naval Medical Center Portsmouth
                              Nice and straight now!!!!!

                              Comment


                              • #30
                                Hi Jennifer, Chris & Susan, Thanks for your replies.

                                Yeah, I guess I was taking some heavy duty stuff. Especially after that 2nd surgery. The incision was so very painful and they couldn't get my pain under control. Finally, once we did I was up and around and left the next afternoon. But what I came home on was a horse dose of meds for the first week: 30mg Morphine every 8 hours (long acting) and 6mg Dilaudid every 4 hours (short acting.) I've been cutting back here and there ever since the end of April. The short acting meds should always be the first to be cut out, or so I've been told. I was addicted physically and I think it's okay to admit that. It happens, how can it not when you take an addictive drug for 4 months? What I am not is psycologically addicted and that's a huge difference. We're all different and we do what we need to do to adjust to our new spines and all things surgery related. It's just really nice to be able to come here and vent or ask questions or whatever.

                                Yes, I’m convinced the insomnia is related to my withdrawal from Dilaudid. Not only is it on the list of possible symptoms/side effects, but it started two days after my last mini dose of dilaudid. I was a sound sleeper (like the dead almost) after the surgeries, then as I’ve been decreasing the pain meds, I haven’t slept as soundly, but I wouldn’t have called it insomnia, not like now. I’m gonna tough it out for awhile longer – I’m sure it will pass. I could try Lunesta perhaps since I can no longer safely take Ambien.

                                I hope this restless leg thing passes too! It’s really bizarre.
                                Julie - 51 yrs old

                                Dx'd 1973 - 43* thoracic curve / rotation
                                Wore Milwaukee brace 1973 - 1979
                                Pre-surgery: 63* thoracic / 52* lumbar curves


                                Surgeries: P - March 16, 2009 - Fused T3-S2 with pelvic fixation
                                A -April 14, 2009 - Fused L5-S1
                                Achieved +70% Correction
                                Dr. Khaled Kebaish, (and team) Johns Hopkins Hospital, Baltimore


                                Standing x-ray
                                New Spine 03/19/2009
                                New Spine Lateral 03/19/2009

                                Comment

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