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Hip pain caused by scoliosis...????

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  • #91
    hi dixie's mom...
    sorry you are in pain...
    just sent you a private message

    jess...and Sparky

    Comment


    • #92
      shocked at how much pain i am feeling without NSAID help...
      see pain doc's PA tomorrow in NYC to discuss meds...
      but will probably schedule steroid shot for left hip for December....
      figure it is less area and will require less of the steroid...
      the spine is bad but i cannot risk the amount of steroid it requires
      to relieve the pain...takes alot, and i cannot risk the cortisol drop
      again...no guarantee it would come back a second time...

      very discouraging that the NSAID was what was causing pain reduction.
      not healing of left hip...

      ah well....
      this is not for sissies, as i think Sally (loves to skate) wrote...
      neither is aging...

      jess...and Sparky

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      • #93
        Oh my gosh, Jess. That sounds crazy bad.

        I hope they help you.

        Sharon
        Sharon, mother of identical twin girls with scoliosis

        No island of sanity.

        Question: What do you call alternative medicine that works?
        Answer: Medicine


        "We are all African."

        Comment


        • #94
          Sorry the pain has come back so badly, Jess. Good luck tomorrow!
          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


          • #95
            Jess

            Your not taking any NSAID’s? Are you taking anything at all?

            What about a warm pool. Warm water therapy?

            I hope this flare up passes soon.

            Ed
            49 yr old male, now 63, the new 64...
            Pre surgery curves T70,L70
            ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
            Dr Brett Menmuir St Marys Hospital Reno,Nevada

            Bending and twisting pics after full fusion
            http://www.scoliosis.org/forum/showt...on.&highlight=

            My x-rays
            http://www.scoliosis.org/forum/attac...2&d=1228779214

            http://www.scoliosis.org/forum/attac...3&d=1228779258

            Comment


            • #96
              hey guys...
              thanks for the concern...

              Ed, i reacted to the Diclofenac, as i feared would happen, about a week or so ago....so i am now allergic to Vioxx, Celebrex, and Diclofenac...
              which makes NSAID's off limits to me....
              i didnt realize how much pain relief i was getting from Diclofenac til i stopped taking it completely...

              i have hydrocodone and oxycontin...but am needing to increase how much of it i take without an NSAID to cut the inflammation...

              so the hip hurts, and spine feels worse...makes me wonder about surgery...

              problem is, too much steroid and my cortisol will crash...so i have not had any steroid shot in over a year...

              therefore, narcotic pain meds are all i take lately...

              thanks again...Sharon, Jennifer, TiEd....for the replies..
              am seeing pain doc in Manhattan today...
              the train ride is not fun when in pain...
              will probably cave in and ask for steroid shot in hip for next month...it is a small area to put shot in hip, compared to entire spine, as i used to
              get.

              i am staying over in Manhattan tonite, returning to CT Wednesday...will not be back online til Wednesday nite...
              but seeing Manhattan again, especially at nite, is good for my soul...

              jess...and Sparky
              Last edited by jrnyc; 06-08-2014, 11:45 PM.

              Comment


              • #97
                That sounds like a good plan, Jess. They have to help you.

                Best regards,
                Sharon
                Sharon, mother of identical twin girls with scoliosis

                No island of sanity.

                Question: What do you call alternative medicine that works?
                Answer: Medicine


                "We are all African."

                Comment


                • #98
                  Jess,

                  I'm sorry the pain is getting worse again. Is there anything you can do to modify your routine? When my back/leg pain was at its worst I used a shower chair and sat down to put on makeup, for example. I also would put one foot up when I had to stand--like to wash dishes I would put one foot on the inside ledge of the cabinet below. I would try to lay down for a few minutes frequently. Hearing pads. And what about topical pain relievers - the patches or creams? Just brainstorming here. I'm sure you've probably tried all of this already.

                  Thinking of you,
                  Evelyn
                  age 48
                  80* thoracolumbar; 40* thoracic
                  Reduced to ~16* thoracolumbar; ~0* thoracic
                  Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
                  Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
                  Not "confused" anymore, but don't know how to change my username.

                  Comment


                  • #99
                    hi Ev
                    thanks so much for your reply and concern.

                    i just got back (this afternoon) from seeing PA at the pain doc office in Manhattan...
                    i got a script for PT for the left hip. i was scolded for having increased
                    the hydrocodone just for a FEW DAYS after i reacted allergically to the
                    NSAID and needed relief from the increased pain... i thought it better to
                    increase the hydrocodone rather than the oxycontin, but was told the
                    opposite...that i was getting too much tylenol and would be better to
                    increase the oxy if i needed to take more pain meds....
                    so i will be going up to two oxycontin from one a day, and staying at
                    the previous maximum of 6 hydrocodone a day, IF needed...
                    was also given a script for skelactin...(splg??) have never had it before...
                    but will pick up prescription and see if it helps my pain.

                    i also agreed to a steroid injection in left hip for Dec 11th if i can be
                    squeezed into schedule that day....i am VERY NERVOUS about that...
                    it has to be the minimum amount of steroid possible...i am very scared
                    that my cortisol could drop to zero again...
                    i thought left hip would need less steroid...but PA claims it will be same
                    amount as if doing spinal injection....that shocked me and i said i need to talk to pain doc about it...

                    i mentioned to the PA that i am wondering about surgery...
                    as usual, she was against the idea...in my experience, pain doctors and
                    their staff are against fusion surgery.

                    thanks for the concern...
                    hope you are feeling well, Ev..
                    have a wonderful Thanksgiving
                    jess...and Sparky

                    Comment


                    • Hi Jess,

                      so sorry to hear about your hip pain---I hope the injection will go well and provide some needed relief.

                      No surprise that the pain office was against surgery--they really have no clue about fusion surgery for severe scoliosis vs. the small garden variety one or two level fusions that so many people have for simple herniated discs, many of which don't seem to help apparently. Please don't listen to their opinions about surgery.

                      If you are wondering at all about surgery, it seems like Lonner would be a great source of accurate info that pertains to your spine specifically.

                      I hope you and Sparky have a wonderful Thanksgiving. Does he get to taste any Thanksgiving treats? We have two greedy dogs with iron stomachs, so they will get to enjoy some turkey!
                      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


                      • Jess,
                        I hope you make it home safely today. I know you LOVE the city and will miss it.
                        I had to quit taking my NSAID (naproxen sodium) because it was ripping my guts apart. The other ones designed to be lighter on the tummy just don't have the strength to help. I didn't realize how much pain I was in until they disappeared from my diet. At least I can start them again for a little while. I can only use them for about a month at a time, then my guts hurt so badly that I can't eat and lose a bunch of weight that I can't afford to lose. I got chewed a little by my nurse for losing 4 pounds this last visit.

                        I don't understand why your pain management team is so against surgery for you. They aren't like that with me. Well, one doctor was, but he's gone. Do they want you to have permanent nerve damage? Don't they understand that's what can happen? It just doesn't make sense.

                        I hope you feel better on the upped oxycontin. Since they changed the formula and put plastic polymer in it, it just doesn't work AT ALL for me. Yes, you have to watch your acetaminophen intake. For those of us taking it regularly they don't want you going over 3,000mg/day. In fact, I think the FDA lowered it for everyone from 4.000mg to 3,000mg/day. It's a MAJOR cause of liver failure. One doctor told me that it's the most dangerous drug out there for that reason alone. My doctor told me to try to keep it down if I can.

                        I hope you get to feeling better soon. I'm sure December 11th can't be here soon enough... with apprehension, of course. I hope it works with no ill effects.

                        Take Care
                        Be happy!
                        We don't know what tomorrow brings,
                        but we are alive today!

                        Comment


                        • thanks Gayle and rohr, for the kind comments...
                          the train back from NYC left Penn Station an hour and a half late...
                          made for a long day...

                          i have never met a pain doctor yet who was in favor of fusion surgery...
                          they all said not to do it for pain relief, "as you may not get any"
                          and only to do it if the progression of curves is very fast and very bad...

                          am hoping the PT, the skelactin (splg?) and the steroid shot next month
                          will help reduce the level of pain, along with an additional oxycontin a day...i held off on increasing the oxy for as long as i could...
                          and will have fingers crossed that the steroid does NOT bring my cortisol down.

                          i hope everyone has a wonderful Thanksgiving..
                          Sparky is my little angel that i am so very thankful for...he will get a few little Thanksgiving treats for the holiday...

                          i am thankful for the people on this forum, too.

                          rohr, i am sorry the oxy doesn't help you anymore, but glad you can still take an NSAID,
                          even if it is not continuously...whatever you can do to get the meds to help, without
                          them ripping your stomach up..
                          Gayle, i hope you are well and free of pain.

                          jess...and Sparky

                          Comment


                          • Jess,
                            I've taken Skelaxin before. It's a mild muscle relaxant. I found no relief with it and coupled with the other meds I was on at the time, hydrocodone and diazepam, it made me throw up. My two muscle relaxants that I use now are baclofen and klonopin (clonazepam). This combination is much more helpful. Although, I found Soma (carisoprodol) to work quite well, my physician is not willing to prescribe it. When it's metabolized it first acts as a muscle relaxant, then breaks down into a tranquilizer type med like the benzos. He said it can be quite addicting. Honestly, I wish I could still take it now and then. I do have some left, but I'm not in to mixing all these meds! I do want to stay alive. LOL
                            Last edited by rohrer01; 11-23-2013, 04:15 PM. Reason: spelling error "skelaxin" LOL
                            Be happy!
                            We don't know what tomorrow brings,
                            but we are alive today!

                            Comment


                            • Good luck Jess. I hope one way or another, you can reduce this pain, safely.
                              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


                              • Have a great Thanksgiving--and hopefully a better feeling day!
                                T10-pelvis fusion 12/08
                                C5,6,7 fusion 9/10
                                T2--T10 fusion 2/11
                                C 4-5 fusion 11/14
                                Right scapulectomy 6/15
                                Right pectoralis major muscle transfer to scapula
                                To replace the action of Serratus Anterior muscle 3/16
                                Broken neck 9/28/2018
                                Emergency surgery posterior fusion C4- T3
                                Repeated 11/2018 because rods pulled apart added T2 fusion
                                Removal of partial right thoracic hardware 1/2020
                                Removal and replacement of C4-T10 hardware with C7 and T 1
                                Osteotomy

                                Comment

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