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  • #16
    Hi, Jana. Good to hear from you! I'm feeling "OK." My hip pain is still there, but not severe. I think because I only walk 10-minutes at a time. I know if I was doing long walks, it would hurt way more. So, the issue is definitely still there. I guess for now I'll just keep with the shorter walks and hope that it goes away and I can walk longer with no pain. No one can live their life only walking 10 minutes at a time! We'd get nothing accomplished at that rate!

    My nights are still bad. Last night was another really bad night. Ugh! It is SO frustrating! I slept from 2:30 - 5:30 a.m. I did manage to sleep another 2 hours from 8 - 10 this morning. So, I'm still feeling shaky and not hungry and all the things that go along with being overly tired.

    Linda and I have been talking about thigh pain. My thighs STILL are super sore and tender. I keep massaging them and using this roller massage thing that my son has. Nothing seems to make that pain ease up. But, I actually had that before my surgery. I thought it was from my walking gait being so "off", and maybe it was.

    The weird thing is that my back pain isn't my biggest complaint. It does get tired and achy if I'm on my feet too much so I know if I over did things, I would be in trouble. Which I'm sure someday I will end of over doing things w/o realizing it. When I walk outside, if I hit an uneven spot and my foot slams down harder, that hurts! So, I'm really paranoid when I walk out side. I do a lot of my walking in the hallways of this apartment. I'm met more of John's neighbors than he has!

    I keep reminding myself I'm only 35 days out. I KNOW I'm doing really well all things considered. But, I'm getting to that frustrating point.....

    I'm going home in 9 days! I'm also anxious to go home, although I love being with my son :-) I think having a change of scenery and being in my own bed and all of that will give me a new outlook and a renewed sense of things. My husband got here last night so he's here for 3 days. That always makes me feel better too.

    My kids are grown (they are taking care of me! LOL!). I can't imagine going through this with little kids! They will probably love being your "helper."

    Hang in there Jana. It's so nice to know someone who's surgery date is basically the same as me. It's nice to be able to compare my symptoms and complaints.

    Take Care,

    Kathy
    Decompression surgery L4/L5
    April 3, 2015
    Twin Cities Spine Center - Dr. Joseph Perra
    Fused from T11 - Sacrum anterior/posterior
    June 24, 2016 - 55 years old at surgery
    Twin Cities Spine Center - Dr. Joseph Perra
    Before Surgery: 42 degrees lumbar, 28 degrees thoracic
    After Surgery: 10 degrees lumbar, ?? Thoracic
    2 inches taller

    Comment


    • #17
      Hi Kathy,

      It is great to hear from you! I thought of you last night with this emoji🙄 while I stared at the ceiling the entire night. I never slept once! It was so annoying. It had been a long eventful day as we left my recovery house in La Jolla and drove home, which ended up taking over 3 hours because we stopped for a quick lunch and gas. I was doing great in the front seat of my mom's comfy car with 2 soft pillows and 2 ice packs. I walked around while they ordered lunch and after we started on the second half of the drive, my back started feeling very tight and I could not get comfortable. I popped 3 Dilaudid ( it was time for my usual one) and an anti-nausea pill and I had the brilliant idea to lay own in the back seat of my Dad's pick-up ( which has very soft seats). We had to pull over, move luggage around but once I reclined, propped up on a few pillows I felt soooo much better. Even semi-reclined sitting in a car has its limits with me. If you have a car you can lay down in on the ride home, it really helps.

      It was great to be home after almost 7 weeks. I was up more trying to get things put away so by the time it hit 9:30pm, my low back was killing me and I went to bed. Although I never slept! The pain went away but my bed is firmer than the other mattress I got used to, so I am hoping it is just an adjustment.

      My upper back is really not in pain anymore, it is all in my lower back. I feel like I have the bear claw people talk about in my low left side. I think I could almost be off the pain meds if it wasn't for that spot. It makes it very hard to walk more than a few houses down. So frustrating. I still walk very slow.

      It is hard to realize at home all your stuff up high or down low is not accessible anymore. I need to rearrange things better but I get the pain and just want to get on the couch. Have you felt restless? I do yet I don't really feel like going out or seeing people yet. My kids have been so sweet and helpful, even my 4 year old. It seems he really understands my limitations. Keep me posted on how you are going. I hope we get some sleep tonight!!

      Best,
      Jana
      Diagnosed with idiopathic scoliosis at age 11
      Dr. Edgar Dawson of UCLA
      Braced and "stopped" below 50 degrees
      Age 25: 47 degrees, 48 degrees
      Age 38 (3 babies later): 60 degrees, 63 degrees and 2.5 inches shorter
      Age 41: 64 degrees, 70 degrees
      Dr. Gregory Mundis Jr. of Scripps Hospital, La Jolla CA
      June 2015-ALIF on L5-S1 for a slipped and degenerated disk
      June 14, 2016-T4-L4 spinal fusion with instrumentation
      Post-surgery: 16 degrees, 12 degrees and 2 inches taller

      Comment


      • #18
        Hi, Jana. I'm wondering how your days and nights are going now that you are at home?

        I still am NOT sleeping. It's almost becoming a joke, except for that I don't find it funny! It is definitely taking a toll on me. This chronic fatigue is not good. I still do my walks, but am less motivated. I feel "agitated" all day long. I'm wondering if it's the weaning of the drugs? I don't know. Last night I did fall asleep for a couple of hours - I woke up drenched in sweat! My tshirt was so wet I had to get up and put a clean one on. My hair was soaked. I think this bedroom is a tad bit warm but I have a ceiling fan and a floor fan going. I don't think a hot room caused that. It was really weird, It may have been a hot flash, I don't know. I wasn't able to get back to sleep after that.

        I did go to lunch with my Aunt today. I was gone about one hour and 45 minutes. That was enough. I wasn't in pain and I did fine sitting through lunch, but I had reached my limited and needed to lay down when I got back.

        Back to the original topic of this thread, my hip bursitis seems to be settling down. But, I don't walk more than 15 minutes at a time - which is fine for now anyway. I am able to do multiple 10 or 15 minute walks a day w/o much pain, so that's what I've been doing.

        My 6-week post op appointment is this Thursday, so only 3 more days! I hope a get a good report and can head for home. I have a 5 hour ride home. I will probably take your advice and lay down in the back for part of the drive.

        I hope you are getting along OK.

        Kathy
        Decompression surgery L4/L5
        April 3, 2015
        Twin Cities Spine Center - Dr. Joseph Perra
        Fused from T11 - Sacrum anterior/posterior
        June 24, 2016 - 55 years old at surgery
        Twin Cities Spine Center - Dr. Joseph Perra
        Before Surgery: 42 degrees lumbar, 28 degrees thoracic
        After Surgery: 10 degrees lumbar, ?? Thoracic
        2 inches taller

        Comment


        • #19
          Originally posted by KathyInIowa View Post
          Last night I did fall asleep for a couple of hours - I woke up drenched in sweat! My tshirt was so wet I had to get up and put a clean one on. My hair was soaked. I think this bedroom is a tad bit warm but I have a ceiling fan and a floor fan going. I don't think a hot room caused that. It was really weird, It may have been a hot flash, I don't know. I wasn't able to get back to sleep after that.
          Hi Kathy...

          You should take your temperature a few times to be certain you're not running a fever. It wouldn't surprise me if it was a hot flash. If you haven't already started menopause, the surgery could certainly catapult you into it.

          --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


          • #20
            A lot of that sounds like it could be from the meds...I had this happen several times at night, where I had to change my nightshirt I was so sweaty, but it stopped once I was off the meds. I still have regular cycles with no hot flashes now.

            I also had a lot of trouble sleeping in the early days and weeks which is very stressful. It does get better in time is my only advice. Good luck at your appointment, and keep up the good work! The multiple 10-15 minute walks sounds perfect.
            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


            • #21
              Good luck on your appointment and trip home. It is exciting to go home. I know you are still early in recovery but it will keep getting better. Some of the issues just peak and then go away. It will be a long year but when you look back you will see that while a bumpy ride you made it to the top! Continue to take care of yourself.
              Last edited by jackieg412; 08-02-2016, 08:10 PM.
              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


              • #22
                So I'm curious, by bursitis, do you mean sciatica or a radiculopathy? With bursitis, you have a fluid-filled bursa that is usually caused by some sort of repetitive injury (like resting your elbow on your desk every single time you talk on the phone). If the sac stays around for more than a few weeks, it usually has to be removed surgically so that the sac is removed and doesn't return. Otherwise, they go down pretty fast with ice/heat.

                After my lumbar surgery, I definitely had sciatica on both sides of my hips. I could barely walk at times. I would have to lie flat on my back at all times because I couldn't turn onto my hips on either side, it just hurt too much. After three months, I had to take a small course of steroids which helped to knock down the pain considerably. I still get it. But now I use a topical anti-inflammatory called Solarase (prescription for $250 here in the US, or over the counter in Europe for $4 converted) so that I don't touch the fusion area with an anti-inflammatory drug. I go to Europe quite frequently and I stock up on the stuff; it's called Voltaren over there. It works like a charm! I highly recommend it. I would pay the $250 out of pocket if I had to, or I'd pay anyone going to Europe to bring me back some if I had to. It's like putting Celebrex or Advil right over the painful area only, so that the damaging effects of those products don't hurt my new fusion.

                Cheers!!!
                "The plural of anecdote is not data" --Frank Kotsonis

                Ph.D. in Bone Biology
                Harrington rod and Leuke sublaminar wires 2/1986, fused T4 to T12.
                First revision 3/1987 fused pseudoarthrosis, placed CD instrumentation from T10-T12.
                CD instrumentation removal 10/97 following breakage.
                Leuke wire removal 4/99.
                Salvage surgery; Harrington removal 1/2000, fused to L2.
                Ruptured disc, fusion extension to L4 3/2016.
                Surgeons: David Bradford, Francois Denis, Mike Lagrone

                Comment


                • #23
                  Originally posted by KathyInIowa View Post
                  Last night I did fall asleep for a couple of hours - I woke up drenched in sweat! My tshirt was so wet I had to get up and put a clean one on. My hair was soaked. I think this bedroom is a tad bit warm but I have a ceiling fan and a floor fan going. I don't think a hot room caused that. It was really weird, It may have been a hot flash, I don't know. I wasn't able to get back to sleep after that.
                  Kathy
                  Hi Kathy,

                  It's the drugs. Especially if you were on morphine or any type of morphine-derived drug. People get the sweats even if they're late taking it by 30 minutes sometimes. If you're coming down off of them, that's why. They'll go away fast as your body acclimates. The higher the dose though, the more you will experience this effect when coming down off of them.

                  If it's really really bothering you, get your doctor to prescribe some Baclofen. It will help a whole lot with all of the symptoms of coming off of opiates. And as an added bonus, it's a muscle relaxant specific for the back!!!
                  Last edited by Prfbones; 08-02-2016, 12:29 PM.
                  "The plural of anecdote is not data" --Frank Kotsonis

                  Ph.D. in Bone Biology
                  Harrington rod and Leuke sublaminar wires 2/1986, fused T4 to T12.
                  First revision 3/1987 fused pseudoarthrosis, placed CD instrumentation from T10-T12.
                  CD instrumentation removal 10/97 following breakage.
                  Leuke wire removal 4/99.
                  Salvage surgery; Harrington removal 1/2000, fused to L2.
                  Ruptured disc, fusion extension to L4 3/2016.
                  Surgeons: David Bradford, Francois Denis, Mike Lagrone

                  Comment


                  • #24
                    Originally posted by Prfbones View Post
                    So I'm curious, by bursitis, do you mean sciatica or a radiculopathy? With bursitis, you have a fluid-filled bursa that is usually caused by some sort of repetitive injury (like resting your elbow on your desk every single time you talk on the phone). If the sac stays around for more than a few weeks, it usually has to be removed surgically so that the sac is removed and doesn't return. Otherwise, they go down pretty fast with ice/heat.

                    After my lumbar surgery, I definitely had sciatica on both sides of my hips. I could barely walk at times. I would have to lie flat on my back at all times because I couldn't turn onto my hips on either side, it just hurt too much. After three months, I had to take a small course of steroids which helped to knock down the pain considerably. I still get it. But now I use a topical anti-inflammatory called Solarase (prescription for $250 here in the US, or over the counter in Europe for $4 converted) so that I don't touch the fusion area with an anti-inflammatory drug. I go to Europe quite frequently and I stock up on the stuff; it's called Voltaren over there. It works like a charm! I highly recommend it. I would pay the $250 out of pocket if I had to, or I'd pay anyone going to Europe to bring me back some if I had to. It's like putting Celebrex or Advil right over the painful area only, so that the damaging effects of those products don't hurt my new fusion.

                    Cheers!!!
                    Allison...

                    The sciatic nerve doesn't come close to the sides of the hips.

                    http://www.mayoclinic.org/~/media/kc...icathu_jpg.jpg

                    Here's a good image showing what generates pain in these areas:

                    https://s-media-cache-ak0.pinimg.com...8444def872.jpg

                    --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


                    • #25
                      Linda great picture of the sciatic nerve. Is it true that pressure in any of those areas can cause leg and foot pain? What test can t where it is coming from?
                      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


                      • #26
                        Originally posted by jackieg412 View Post
                        Linda great picture of the sciatic nerve. Is it true that pressure in any of those areas can cause leg and foot pain? What test can t where it is coming from?
                        The sciatic nerve is a really large nerve with lots of axons that radiate off of the nerve trunk. Sciatic pain can be throughout the thigh, though yes, most people feel it down the back of the thigh. All my physicians are calling it sciatica. That's why I asked.
                        "The plural of anecdote is not data" --Frank Kotsonis

                        Ph.D. in Bone Biology
                        Harrington rod and Leuke sublaminar wires 2/1986, fused T4 to T12.
                        First revision 3/1987 fused pseudoarthrosis, placed CD instrumentation from T10-T12.
                        CD instrumentation removal 10/97 following breakage.
                        Leuke wire removal 4/99.
                        Salvage surgery; Harrington removal 1/2000, fused to L2.
                        Ruptured disc, fusion extension to L4 3/2016.
                        Surgeons: David Bradford, Francois Denis, Mike Lagrone

                        Comment


                        • #27
                          Originally posted by LindaRacine View Post
                          Hi Kathy...

                          You should take your temperature a few times to be certain you're not running a fever. It wouldn't surprise me if it was a hot flash. If you haven't already started menopause, the surgery could certainly catapult you into it.

                          --Linda
                          Hi....
                          I did take my temperature at 3 different occasions. It showed 98.6 all 3 times. It was one of those little digital thermometers used in the mouth (not like the fancy ones they put in your ear!).

                          I am not totally done with menopause, and I suffered night sweats ALOT in the last year. They seemed to have stopped for awhile, but that has happened before where they come back. So, it could have been night sweats.

                          I did recently get rid of one of my doses of Dilaudid, so I wonder if it was some sort of withdrawal symptom. I wouldn't have thought that quitting a 2 mg dose would do that, but I don't know much about these drugs.

                          I don't have regular cycles, but I do get a light one about once every 10 months. I did quit having regular cycles until I was 53. That seemed really old to be quitting that! But, then I read somewhere that 53 was actually median age for menopause.

                          Last night I took 10mg of Melatonin. I didn't sleep great, but I must have slept a few 2 hour chunks because today I woke up feel "better," not so shaky from being so tired. For whatever reason, I'm enjoying a day that I don't feel like total crap!

                          Kathy
                          Decompression surgery L4/L5
                          April 3, 2015
                          Twin Cities Spine Center - Dr. Joseph Perra
                          Fused from T11 - Sacrum anterior/posterior
                          June 24, 2016 - 55 years old at surgery
                          Twin Cities Spine Center - Dr. Joseph Perra
                          Before Surgery: 42 degrees lumbar, 28 degrees thoracic
                          After Surgery: 10 degrees lumbar, ?? Thoracic
                          2 inches taller

                          Comment


                          • #28
                            Hi Kathy...

                            Glad to hear you slept a little. I am totally feeling for you.

                            Also glad you don't have a fever. I'm sure your body chemistry is just screwy right now. Hopefully, it will stabilize quickly.

                            I think a neurogram or an electromyogram are the commons tests used to determine the source of nerve pain.

                            --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


                            • #29
                              Originally posted by Prfbones View Post
                              But now I use a topical anti-inflammatory called Solarase (prescription for $250 here in the US, or over the counter in Europe for $4 converted) so that I don't touch the fusion area with an anti-inflammatory drug. I go to Europe quite frequently and I stock up on the stuff; it's called Voltaren over there. It works like a charm! I highly recommend it. I would pay the $250 out of pocket if I had to, or I'd pay anyone going to Europe to bring me back some if I had to. It's like putting Celebrex or Advil right over the painful area only, so that the damaging effects of those products don't hurt my new fusion.

                              Cheers!!!
                              I had no idea this topical existed!.....sounds like the cats meow! Topical Diclofenac.

                              One of these days, I will have to get a tube and keep it next to the fire extinguisher. (Break glass when necessary) I have taken Diclofenac with fantastic results.....(cervical herniated discs)

                              I used to use a product called Infrarub back in the day.....1981 to be exact. How could I forget? You apply, forget to wash your hands, go for the scratch, and sing a much higher tune! LOL

                              He he

                              Thanks for posting....

                              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


                              • #30
                                Kathy, I agree, it’s the drugs.....

                                My decision to terminate was pretty much due to constipation issues....around the 5th week post, it was such a lower GI battle. The spine pain didn’t matter anymore, I had enough.

                                Weaning down is not easy....it can get painful, along with freezing one minute to sweating the next. Hot and cold. Sweating like Niagara falls.....

                                After I quit, I would soak in my tub. I have one of those large deep tubs, 106 degrees F. It took around 2-3 days, and I improved quickly, and then I could eat. I replaced meds with nutrients. Smoothies....

                                My dad used Baclofen as an ALS patient.....

                                If you quit, there will be some pain. Its part of what we go through.....heck, we had enough pain to trigger a decision to have major scoliosis surgery, a little pain after is still an improvement.

                                I had big time trouble with sleeping....Sleeping like a cat. But it does improve slowly.......

                                Hang in there

                                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

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