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Susan's surgery at UCSF with Dr. Hu on 19 and 22 March, 2013

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  • #61
    Hi Susan,

    So glad to read that awful pain you had pre-op, has gone. This is the best we can hope for. Did you gain much height?
    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


    • #62
      So glad to hear that you are doing better. Do you feel thirty again? (wink, wink)

      Tamena
      Diagnosed at age 12 with a double major curve

      Braced till age 15

      SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

      Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

      Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

      Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

      Comment


      • #63
        Originally posted by tae_tap View Post
        So glad to hear that you are doing better. Do you feel thirty again? (wink, wink)

        Tamena
        While I may feel 30, I look like an old lady with my walker, support hose, brace, and depends. Quite funny, actually.
        Susan
        Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

        2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
        2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
        2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
        2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
        2018: Removal L4,5 screw
        2021: Removal T1 screw & rod

        Comment


        • #64
          Susan's surgery

          I am at my son's home in Oakland and am starting to feel somewhat normal. I am almost 3 weeks from my second surgery. The first surgery, anterior and XLIF took 5 hours and I had 2 units of blood. The second surgery almost didn't happen as my PO2 was down to 79 percent. I sat in the preop area doing blowing treatments with the anesthesiologist for about 1.5 hours. Then the anesthesiologist and Dr. Hu decided that I was ok for surgery. Dr. Hu said that they suctioned out my lungs under anesthesia as I had a lot of fluid on my lungs. The PSF took 8 hours and 8 units of blood. I spent 2 nights in the ICU, then on to the regular ward. I saw ants all over the floor marching in formation. I told my daughter that they should clean the hospital better. When my daughter said that they were not there, I believed her, but still saw them marching around. It was rather humorous and entertaining, and must have been due to one of the meds.

          I went to an acute rehab ward of a hospital for a week. I had PT and OT three times a day and quickly learned everything that I needed to learn.

          I was incontinent after the catheter was removed for about a week. Then, I went to my son's house. The incontinence is better now, I am incontinent about once a day now. The incontinence was very frustrating and I was worried that I would be wearing Depends for the rest of my life.

          I retained a lot of fluid everywhere and now wear TED hose. I took diuretics IV in the hospital and stopped the PO diuretics yesterday. I get up every 1.5 to 2 hours at night to urinate and then pain pills every 3 hours. Needless to say, I sleep poorly.

          I have some good days and some poor days, but think that I am gradually doing better. All of my back muscles hurt. Dr. Hu said that is from my poor coronal balance before surgery and my muscles being pulled to the right.

          My incision looks awesome! My kyphosis is pretty much gone in the thoracic area, but the upper, cervical part remains the same, somewhat humped. Dr. Hu said that she was afraid to do anything about the upper part as she spent considerable time on the mid-Thoracic which was the major pivot point for my kyphosis.

          I am pleased with the results and can already walk much further than I could before surgery. I get tired when walking and generally ache, but am not in the pain like I had preop. I walk around outside every day and love being out of doors.

          I cannot figure out how to get my picture of my back off the disc and my cell phone. When I figure it out, I will post them with my signature.

          Susan
          Last edited by susancook; 04-03-2014, 02:54 AM.
          Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

          2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
          2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
          2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
          2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
          2018: Removal L4,5 screw
          2021: Removal T1 screw & rod

          Comment


          • #65
            Susan,

            You have a good sense of humor. Love your story about the ants!!

            Glad to hear you are progressing well. Could the incontinence be related to the diuretic? Hopefully it will go away completely now. Your body also has to flush a lot of fluids post-op. I had bed sweats and my hair would be literally soaked. (And I am not in menopause!)

            The fact that you are already walking farther than pre-op sounds very promising to me! Keep up the good work.

            Best,
            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


            • #66
              Hi Susan,

              It's great to hear you're doing so well. You must be relieved and happy. And as time goes by, things will keep getting better. Sounds like Dr. Hu has done a magnificent job.
              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


              • #67
                Susan, I'm so impressed that even with your grueling surgeries, you're able to walk outside. I was such a wimp, I didn't even go outside for a month after my surgery. You're very strong and determined. I really appreciate your updates.

                How are your pain meds doing? It sounds like you have pain under control.
                1973 Age 15 diagnosed with scoliosis but told too old for surgery.
                2001 age 43 told too old for surgery, did physical therapy & traction.
                2001 to 2008 Intermittent use of home traction machine and TENS unit.
                2009 traction no longer effective - physical therapy.
                2011 More physical therapy. 2012 Collapsing scoliosis - MRI before surgery
                At age 53, surgery on October 2nd, 2012 with Dr Hey
                Fusion with titanium rods and bolts from T1 to pelvis.
                Post op x-ray

                Comment


                • #68
                  Glad that you are doing well
                  Melissa

                  Fused from C2 - sacrum 7/2011

                  April 21, 2020- another broken rod surgery

                  Comment


                  • #69
                    Originally posted by JenniferG View Post
                    Hi Susan,

                    So glad to read that awful pain you had pre-op, has gone. This is the best we can hope for. Did you gain much height?
                    By my home measurement, I gained 2.5 inches. Yea! Back to 5 foot 2 inches.
                    Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                    2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                    2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                    2018: Removal L4,5 screw
                    2021: Removal T1 screw & rod

                    Comment


                    • #70
                      Originally posted by JuliaAnn View Post
                      Susan, I'm so impressed that even with your grueling surgeries, you're able to walk outside. I was such a wimp, I didn't even go outside for a month after my surgery. You're very strong and determined. I really appreciate your updates.

                      How are your pain meds doing? It sounds like you have pain under control.
                      I go outside for a walk every day. The sunshine In Oakland is refreshing. I walked to a Saturday market today but needed to stop once to sit outside someone's house. It was about 3 short blocks.

                      Pain is somewhat controlled, but since I had so much preop pain, I am used to it. I take Dilaudid 6 MGM every 3 hours. I don't know if that is a lot or not much. I was on 8 mgm every 3 hours in the rehab hospital. My lateral thoracic back aches and the Lidocaine patches have helped that some. I also take Baclofen 4 times a day.

                      I take 2 naps a day.

                      How much pAin meds do people usually take at 3 weeks postoperative? I am allergic to oxycodone.

                      Susan
                      Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                      2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                      2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                      2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                      2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                      2018: Removal L4,5 screw
                      2021: Removal T1 screw & rod

                      Comment


                      • #71
                        Originally posted by JenniferG View Post
                        Hi Susan,

                        It's great to hear you're doing so well. You must be relieved and happy. And as time goes by, things will keep getting better. Sounds like Dr. Hu has done a magnificent job.
                        She could not fix my upper part of my kyphosis and that is a little bit disappointing. I never really noticed that the upper part was so angled as the lower part jutted out so much. The lower part is gorgeous!

                        My anterior scar looks ugly. Hope that it looks better with time.

                        Susan
                        Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                        2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                        2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                        2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                        2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                        2018: Removal L4,5 screw
                        2021: Removal T1 screw & rod

                        Comment


                        • #72
                          Susan,
                          I am sure you will gradually notice improvements every week. To answer your question . . . at three weeks post op, I think most of us were on maximum pain control. This is truly the toughest time, so you have much to look forward to with your recovery.
                          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


                          • #73
                            Susan,

                            At 3 weeks I was on 30mg of OxyContin 2x/day (down from 40mg 2x/day the week prior) and 15mg of oxycodone every 4 hours. It was a lot and I'm a tiny person, but I needed it. My visiting nurse encouraged me to cut back on the oxycodone and so I started to wean fairly easily after that. Weeks 2 and 3 were the worst for me - I felt awful from the narcotic side effects and the weather was too lousy in New England for me to get outside. Like everyone says here, it slowly gets better every week. I'm 8 weeks now and feeling significantly better - I'm walking 2 miles at a time and I've been cleared to go back to the pool, plus my energy has improved to the point where I'm only lying down for a couple of hours during the day.

                            I hope you continue to have a smooth recovery...

                            Comment


                            • #74
                              Originally posted by aileens View Post
                              Susan,

                              At 3 weeks I was on 30mg of OxyContin 2x/day (down from 40mg 2x/day the week prior) and 15mg of oxycodone every 4 hours. It was a lot and I'm a tiny person, but I needed it. My visiting nurse encouraged me to cut back on the oxycodone and so I started to wean fairly easily after that. Weeks 2 and 3 were the worst for me - I felt awful from the narcotic side effects and the weather was too lousy in New England for me to get outside. Like everyone says here, it slowly gets better every week. I'm 8 weeks now and feeling significantly better - I'm walking 2 miles at a time and I've been cleared to go back to the pool, plus my energy has improved to the point where I'm only lying down for a couple of hours during the day.

                              I hope you continue to have a smooth recovery...
                              aileens, are you still using a cane when walking outside? If not, when did you stop using it? I am 5 weeks post-op and walk without anything at home, but take my cane when I go outside. I don't feel comfortable walking without a cane outside yet and wonder when would be the time to ditch it. I know we're all different and since I have right hip/leg pain, I'd probably need a cane for a while...
                              I am stronger than scoliosis, and won't let it rule my life!
                              45 years old - diagnosed at age 7
                              A/P surgery on March 5/7, 2013 - UCSF

                              Comment


                              • #75
                                Irina, I'm still using my cane when I walk outside of the house. I still feel a little wobbly so it's nice to have, and my surgeon likes me to use to keep proper posture. It's also kind of nice to have a visual cue - people give me lots so space and are helpful when they see the cane. Not entirely sure when I'll be able to put it away...

                                In terms of other things to look forward to, I drove for the first time today! It was only 5 mins to the grocery store on a Sunday morning when the streets were quiet and it went fine. I was surprised by how exhausted it made me and how weak my muscles still are, so I will leave the driving to my husband for the time being.

                                Comment

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