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

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  • Sometimes after being on a high (the relief that the surgery is done, you survived and it was successful, why wouldn't you be on a high?) then something goes wrong (the incisional hernia) we can fall in a slump. I'm sure you already know this, but when it's happening to us, perhaps we need to be reminded? This is a slump, that's all, you will get these problems fixed and your life is going to be great with your new back. It's a shame you have encountered these problems. I know that I fully expected to never have anything ever go wrong with me again after undergoing such a huge surgery, (wasn't that the least I deserved? <grin> )
    but when I then had gall bladder problems then heart problems, I did fall in a slump. I'm out of it now though, and I'm still thrilled with my back. Nothing will change that. It was worth it, a zillion times!
    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


    • Hugs Susan


      Melissa
      Melissa

      Fused from C2 - sacrum 7/2011

      April 21, 2020- another broken rod surgery

      Comment


      • Susan,

        I agree with Jennifer. In fact, I think I read in Wolpert's book (it's been a while), that it's not uncommon to go through a slump or even get depressed around 3-4 months post-op. That's when the early surgical pain is gone, but you start to realize exactly how long this recovery is going to take. Everyone has unique issues. You've got the hernia and leg pain. At that time in my recovery I was still having trouble getting off the last of the pain meds, sitting for long periods of time, and I had recently started having sciatica. It's not 100% perfect for me now, but things have improved a great deal over the year since then, and I am no longer feeling down. Hang in there -- you WILL improve. Can you see a surgeon about your hernia, or does that need to wait? Also, is your leg pain related to your back surgery? I don't remember you mentioning it before. Think about how far you've come! Just a few months ago you were sitting on the floor of an airport, if I remember correctly!

        Best wishes,
        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


        • Originally posted by Confusedmom View Post
          Susan,

          I agree with Jennifer. In fact, I think I read in Wolpert's book (it's been a while), that it's not uncommon to go through a slump or even get depressed around 3-4 months post-op. That's when the early surgical pain is gone, but you start to realize exactly how long this recovery is going to take. Everyone has unique issues. You've got the hernia and leg pain. At that time in my recovery I was still having trouble getting off the last of the pain meds, sitting for long periods of time, and I had recently started having sciatica. It's not 100% perfect for me now, but things have improved a great deal over the year since then, and I am no longer feeling down. Hang in there -- you WILL improve. Can you see a surgeon about your hernia, or does that need to wait? Also, is your leg pain related to your back surgery? I don't remember you mentioning it before. Think about how far you've come! Just a few months ago you were sitting on the floor of an airport, if I remember correctly!

          Best wishes,
          Evelyn
          Thanks, Evelyn. Lying on the floor at the airport for over an hour was a very low point for me and was a motivator for surgery. I plan to see a surgeon soon for an evaluation of my incisional hernia. I need to go shopping at Goodwill for some bigger pants. There is a surgeon in Portland who specializes in hernias and uses a laparoscope. My son is going to have his ACL repaired in September and my husband and I are going down to Oakland to help his family. I don't remember the recommendation, but I believe that my surgeon wanted me to wait 6 months for elective surgery.

          My R leg was painful before surgery with sciatica from a stenotic L4. Now it is somewhat weak and my knee is painful and slightly swollen. I have L leg butt pain which I did not have before surgery. looked at my X-ray and noticed that my R pelvis was lower than my L side, so I put a lift in my shoe and that has lessened the discomfort on my L buttocks. Unsure what the R knee pain is about, maybe unrelated to the surgery. I need to have that assessed.

          I am tired of going to Physical Therapy, doctors appointments. My life revolves around medical appointments. I finally went to the dental hygienist for a cleaning and brought a pillow for back comfort. I was sitting up when she lowered the chair to put me in a lying position. I immediately said "stop" as I have not lowered my body like that, I always use my arms and go down on my side first. Wish that I had thought that through. Then she said that I needed to followup with the dentist for a small cavity. I don't think that I am ready for that.

          I somehow thought that after the surgery, I would just heal and progressively improve with some ups and downs. I am frustrated with myself for not asking for a mesh on the closing of the ALIF. Of course, I thought that I would not have any major problems after surgery.....which I didn't and then at 2 months, the L butt pain started and then the R knee pain, then the daily headaches. I was walking well for the first 2 months, but that is limited now. I have gained about 10 pounds since surgery and I would really like to take it off. Feeling depressed hasn't helped any. Bummer......

          My neurologist ordered trigger point injections and since the spots on my neck are so painful, the injections worry me. I cannot imagine ever having cervical surgery.

          You mentioned the Wolpert book, he said that older persons should not have surgery as it was too dangerous. Interesting comment that caused me to hesitate to have surgery.

          I am trying to take it one day at a time and not think about the big picture. I am trying to structure my day with my physical therapy exercises and schedule appointments to see various MDs.

          I have very little back pain, just tightness and the feeling that something is stuck to my butt. Of course I have lots of numbness in my back and legs.

          Thanks Evelyn and everyone who has sent supportive comments. I wish that you all could come over to my house and we could sit around the living room and talk. I would serve fine northwest wines to everyone not on narcotics, and everyone else could have herbal tea. I am sure that would be more helpful than seeing my counselor.

          Susan.....trying to crawl out of the dumps
          Last edited by susancook; 07-21-2013, 02:51 PM. Reason: Improvement is always needed!
          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


          • Susan,

            Could be your buttock pain related to illiac screw? It is common and I remember Dr. Hu saying that 50% of patients have these screws removed. It is an easy procedure with an overnight stay in the hospital and then taking it easy for two weeks. I am not saying that this is what you have, just thinking aloud. I had right buttock pain that radiated all the way down to my foot, but it started immediately after the surgery and is getting better, actually much better. I can live with that.

            Did you take an antibiotic before your dental cleaning? Jo-An told me to take antibiotics before any dental procedure for two years. May be it's just for me because I had an infection with my hematoma, but worth checking Dr. Hu. Also, some antibiotics, levoflaxycin specifically, have joint pain as a side effect. But you're saying that only one knee hurts, so I doubt it's a reaction to some medication.

            And, hey, don't think of yourself as an older person - you're hip and adventurous woman who traveled the world and has wonderful sense of humor. This is just a small bump on your road to recovery!
            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


            • I am wondering if any knee pain might be caused by the need to squat or partially squat, much more than pre-surgery, which might bother susceptible knees. I had sore knees at some stage in the early months, but my knees seemed to adapt and the pain went away. I still combine bending from the hip and partial squatting to pick things up from the floor.

              I agree, a soiree with tea and wine would do you (and the participants) heaps of good, seeing each other and talking about things. I believe there should be more of it!
              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


              • Originally posted by Irina View Post
                Susan,

                Could be your buttock pain related to illiac screw? It is common and I remember Dr. Hu saying that 50% of patients have these screws removed. It is an easy procedure with an overnight stay in the hospital and then taking it easy for two weeks. I am not saying that this is what you have, just thinking aloud. I had right buttock pain that radiated all the way down to my foot, but it started immediately after the surgery and is getting better, actually much better. I can live with that.

                Did you take an antibiotic before your dental cleaning? Jo-An told me to take antibiotics before any dental procedure for two years. May be it's just for me because I had an infection with my hematoma, but worth checking Dr. Hu. Also, some antibiotics, levoflaxycin specifically, have joint pain as a side effect. But you're saying that only one knee hurts, so I doubt it's a reaction to some medication.

                And, hey, don't think of yourself as an older person - you're hip and adventurous woman who traveled the world and has wonderful sense of humor. This is just a small bump on your road to recovery!
                Nobody told me about antibiotics before dental cleaning....hmmmm......hope that I didn't miss something.
                What I would like is for someone would do a thorough evaluation of all of my problems and help me figure out what to do. If the answer is "patience", then I know what to do.

                Thanks for your vote of confidence in me. Sometimes I am not objective. You are an awesome friend!
                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


                • The protocol is, indeed, antibiotics before teeth cleaning for 2 years. FYI, I haven't done so, and, knock on wood, have not had an issue.

                  --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


                  • Antibiotics before dental work seems to be surgeon-specific. My surgeon does not recommend antibiotics for any teeth cleaning, but does for one year for anything involving drilling.

                    Susan,

                    the 4-month post-op slump is very common. You are now past the survival mode, and thoroughly sick to death of being a patient and going to medical appts, having limitations, having pain, etc. I remember the feeling very well at 4 months. Depression is common at this point. It is very easy to fall into a slump and feel disappointed with your lack of progress.

                    You will continue to improve quite a lot. Just keep putting one foot in front of the other and walk several times a day if you can. We have all been in your shoes. Things will get better.
                    Last edited by leahdragonfly; 07-21-2013, 10:55 PM.
                    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


                    • Originally posted by LindaRacine View Post
                      The protocol is, indeed, antibiotics before teeth cleaning for 2 years. FYI, I haven't done so, and, knock on wood, have not had an issue.

                      --Linda
                      Whose protocol?

                      Swell, wonder when my surgeon was going to tell me? I do not believe that it was written on anything that I received from Dr. Hu and I was fairly diligent about reading everything that she gave me.
                      Susan
                      PS: my teeth look great after the cleaning!
                      Last edited by susancook; 07-22-2013, 12:18 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


                      • Originally posted by leahdragonfly View Post
                        Antibiotics before dental work seems to be surgeon-specific. My surgeon does not recommend antibiotics for any teeth cleaning, but does for one year for anything involving drilling.

                        Susan,

                        the 4-month post-op slump is very common. You are now past the survival mode, and thoroughly sick to death of being a patient and going to medical appts, having limitations, having pain, etc. I remember the feeling very well at 4 months. Depression is common at this point. It is very easy to fall into a slump and feel disappointed with your lack of progress.

                        You will continue to improve quite a lot. Just keep putting one foot in front of the other and walk several times a day if you can. We have all been in your shoes. Things will get better.
                        Gayle, thanks for your support. Progress happened so fast early on. I felt that I escaped problems associated with surgery except the mild atelectasis. I did not expect problems after the 2 months. I actually had a good day today. My leg hurt a little less and walking was a little easier. My bathing suit doesn't fit well, and I just bought it. Looking 20 weeks pregnant doesn't help.

                        I will check on antibiotics before I have my cavity fixed. Thanks for the information. Hope that I did not miss other information.

                        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


                        • Both of my surgeons want me on antibiotics before any dental work as well

                          Melissa
                          Melissa

                          Fused from C2 - sacrum 7/2011

                          April 21, 2020- another broken rod surgery

                          Comment


                          • Susan,
                            I am sorry to hear about your latest hernia setback. These bumps in the road can really get us down. About antibiotics before dental work, go to the ADA website and read what they have to say about it. It used to be recommended for people with mitral valve prolapse and no longer is. After implant surgery, it seems to be surgeon driven. My surgeon never mentioned it and I had a cleaning within three months of my back surgery. I wasn't told to take antibiotics and I refused anyway. I don't believe in killing off the good bacteria on the off chance that the bad bacteria will cause a problem. I don't want a "super bug". If the bad bugs get me, then I will deal with them.
                            Take care my friend, Sally
                            Diagnosed with severe lumbar scoliosis at age 65.
                            Posterior Fusion L2-S1 on 12/4/2007. age 67
                            Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
                            Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
                            New England Baptist Hospital, Boston, MA
                            Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

                            "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

                            Comment


                            • Like Sally's surgeon, my surgeon never mentioned it to me either. I had a clean and one replacement filling in that first year, can't remember exactly when, and I was fine.
                              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


                              • Originally posted by susancook View Post
                                Whose protocol?

                                Swell, wonder when my surgeon was going to tell me? I do not believe that it was written on anything that I received from Dr. Hu and I was fairly diligent about reading everything that she gave me.
                                Susan
                                PS: my teeth look great after the cleaning!
                                UCSF. Jo-An is supposed to tell you during the preop teaching. She also didn't tell me.
                                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

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