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  • #16
    Just wanted to say hi and that I wore a brace after all of my surgeries. While at times somewhat uncomfortable, it gave me confidence that I was healing in the right direction. Also, when I went to the supermarket, I had a fear that someone would run into me with the cart. The brace protected me and told people to perhaps be gentler around me. Finally, when I drove, I felt that I would be somewhat protected if I was in an auto accident.

    Best of luck! Have confidence in your surgeon. You are having surgery for all of the right reasons. Inspite of all of my problems, I do not regret having my surgery. If not, I would be in a wheelchair by now in a lot of pain.

    Deep breath, 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


    • #17
      Thanks, Susan. I sent you a "friend request" but not sure I did it right. I appreciate and agree with everything you said. I don't mind being braced. I, like you, consider it a "safety net." One thing I did that has helped me (mentally) is I made a set of flash cards. Each card has a statement on "why I'm doing this." It's about 20 reminders to myself that this IS the right thing to do and NOW is the right time.

      I have a question about a bed: Since I'm staying at my son's apartment until my 6-week post op check up, should I rent a "hospital bed?" I was planning to just take a twin bed from home. It's the older style where the mattresses aren't so tall. But, the mattress is nice & firm. It's a good height for me in terms sitting & standing up. (I'm not very tall). But, now I'm wondering if I should just rent a hospital bed. Is there any advantage to having the adjustable height and all of that?

      Thanks.

      Kathy - sitting in Iowa taking lots of deep breaths!!
      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


      • #18
        I wouldn't say that the height is the problem but the firm mattress may be. It it better to put a memory foam topper on the twin. It may not be possible to sleep without the forgiveness of the foam. If that is too tall you can get a stable step to use. If it is too short you can get a bed raiser kit. The PT should work with you to make sure you have what you need.
        Good luck. It will be over soon.
        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


        • #19
          Originally posted by jackieg412 View Post
          I wouldn't say that the height is the problem but the firm mattress may be. It it better to put a memory foam topper on the twin. It may not be possible to sleep without the forgiveness of the foam. If that is too tall you can get a stable step to use. If it is too short you can get a bed raiser kit. The PT should work with you to make sure you have what you need.
          Good luck. It will be over soon.
          Jackie is right. This is important since I couldn’t sleep and I have a Tempurpedic medium. Once I laid the foam topper on top of my bed, it doubled my sleep time.

          Sleeping is hard after surgery......The foam helps soften things since we have to sleep on our bandages for a while and the scar area or surgical zone is delicate until it heals and toughens up.

          If I had to do it over again, I would select this topper....2-4 inches thick of “latex” foam
          https://www.amazon.com/dp/B010JAE7MC?psc=1

          Also, a good idea to have 2 bottles of Magnesium Citrate on standby. They have different flavors....
          http://www.walgreens.com/store/c/wal...604183-product

          And plenty of soft pillows.......LOTS of them.....The more the merrier.....

          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


          • #20
            KathyinIowa Update - 6/25

            Hello all. This is John, Kathy's husband. Hope I can relay appropriately.

            First, thanks for your forum. It has been a source of great information for Kathy.

            Her surgery was yesterday, Friday morning. We checked in around 5:30am, she went into pre-op around 5:45 and I went back with her around 6:45. We got to meet the team - surgical nurse, anesthesiologist, abdomen doctor and we knew Dr. Perra. Very professional. They shoo'ed me out and I waited to her that they were done with the front and were starting on the back at around 11:45. I next heard from them when Dr. Perra came out and reported that things went well. That was around 2:15. I did not get to see her until about 4:45 - and only for about 10 minutes. They needed to let me know that she would look so pale - including her lips. Freaked me out a bit. She then had to wait for a room to be assigned. I was in the room with her at around 7:15.

            I will try to get this right, cuz I am not the spine expert like you folks!
            When doing the anterior they had goal of doing 3 fusions but did 4 - L2 to sacrum (did I do that right?)
            Posterior was T11 to sacrum
            BMP was used for fusion at 3 and 4
            At 4 and 5 they 'cleared some of the opening out for nerve relief'
            Spaces inserted were 14mm, 10mm, 10mm and 12mm
            Said her bones were strong and they were able to 'scrape' them to improve fusing
            She lost 2 pints of blood during the surgery.

            The first night was as you might expect - people coming in and out of the room, she was sleeping - or passing out - for short times up to 1.5-2 hours of sleep. She was a little bloated everywhere and hot. She was pretty liberal with the morphine button (.1/click, 10 minute minimum between clicks). Blood pressure pretty low 87/56 and 94/57 and Hemoglobin at 7.6. Started on Valium around midnight.

            In the morning took blood and hemoglobin at 7.1. Catheter removed. BP at 115/69. Color returning to face.

            Morphine changed to .2/pump and Valium upped.

            Twice during day they tried to get her to sit up and she got dizzy and passed out - would not wake up second time and scared the bejeebers out of me. A little later in the day they were able to get her to sit in the bed for 20 minutes with the back raised all the way.

            She was able to go #1 a couple times in a bedpan but her belly is bloated and not much for intestinal/bowel activity yet.

            In the afternoon she did some simple PT (ankle pumps, thigh squeezes and glute squeezes) and started on the the spirometer. She has been doing good on all of those.

            Tonight (6pm) they had blood work done and it was 6.7 and ordered 2 units for transfusion. In the process right now while she rests a bit. Started at 9PM and expect it to go until 2AM.

            Think that does it for the update. Let me know if there is info I am not passing that would be of value to you or if there is something that will help me make sure she is doing well and being taken care of.

            JohnInIowa :-) (OK, Minnesota right now!)
            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


            • #21
              John

              The scraping is called partial corpectomy. I had that done along with Susan, another member here. A scraping of the end plates to help with fusion. Like cleaning the old battery terminals for a good connection....(smiley face) All my spacers from L1-Pelvis are 13mm. These spacers actually lift and separate and help create room for nerves. They are made of a plastic called PEEK, and the BMP is inserted inside the spacers, a protein that heals or grows bone quickly.

              The bloating is called an ileus. A shutdown of intestinal activity from abdominal surgery. Not a mechanical shutdown.....They have meds for this, and it does resolve after time. They wont release her till she does have that bowel movement. Mine took 10 days...

              Edema in the legs or feet mainly is another thing that happens. A hydrostatic pressure imbalance. The movement of the legs is extremely important, along with the hallway walks. Continued short multiple walks throughout the day distribute blood and nutrients to healing zones.

              She just had major surgery. It’s the beginning of a 2 year recovery, and slow going.....Sleeping is extremely difficult in immediate recovery, the first 8 weeks are hard. Every minute is spent trying to get comfortable, and the littlest chores can be difficult things. I felt like I was hit by a train. She is going to need time to heal.....

              The old pains from degenerative scoliosis are traded for surgical pains....She needs to know that healing does happen, it takes time and patience.....Its important to have a positive attitude (both of you) while entering the next chapter of the book. When pain hits, never look back, its all forward thinking, one step at a time.

              Any day now, they will let her take a shower. The first shower made me feel quite a bit better......

              Nice report on your part!

              Congratulations! She made it.

              Ask any questions you wish

              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


              • #22
                apologize....off topic

                TiEd.....your private messages are full.

                sorry for interrupting thread.

                jess...and Sparky

                Comment


                • #23
                  I am out of the hospital - looking for advice on drugs and activity

                  Kathy was released from the hospital yesterday afternoon. Was a pretty rough night for pain. She is frustrated because it seems like the pain starts to be controlled and then it goes goofy again. Looking for advice on Drugs and Activity

                  Drugs
                  Dilaudid - 1-2 pills (2mg) every 3 hours
                  Flexeril - 1-2 pills (5mg) every 8 hours
                  Valium - 1 pill (2mg) every 4 hours - but trying to just use at night as it makes her really sleepy and afraid it may be slowing her bowels
                  KeFlex - 1 pill (500mg) 4 times per day - each meal and bedtime (anti-biotic as a safety precaution for the drainage site - which looks much better today)
                  Laxitive - prescribed DOC X Plus - 1-4 pills (50mg) 2 times per day - have also tried replacing with ClearLax. Looking for ideas here as she is uncomfortably distended.

                  Night seems to be worse than day. I wonder if attempting to wean her off the drugs during the day has a delayed reaction? I get mixed advice on narcotics - some say give her enough to keep the pain away and other say wean her or she will be constipated (distended). The distention is an issue. She is uncomfortable with that - but we also battle the pain.

                  As for the incisions themselves, they look great. One of the nurses said they had never seen such a straight incision on the back for as long as it was and everything healing nicely.

                  Activity - We have a plan of 4-5 walks and 4-5 sits per day. Walks are to be 5-15 minutes. We are not sure on how long she should sit. At the hospital it was a challenge to get her up and going, which is not Kathy. But when the PT nurse did get her going, she walked for 10 minutes, went up and down a flight of stairs 2 times and got in and out of a 'test car'.

                  I am a rookie nurse and can use all the help I can get. If you want to provide any information off-forum, my phone number is 712-251-4666. Feel free to text me. Thanks again for your help.

                  John
                  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


                  • #24
                    I am glad that you are on this side. It is a long healing process. It takes about two years. Do not over do it. Listen to your surgeon. Ask questions here and of your surgeon. Get pain relief.
                    Melissa

                    Fused from C2 - sacrum 7/2011

                    April 21, 2020- another broken rod surgery

                    Comment


                    • #25
                      Just a few words---you made it!
                      It will take time. As far as pain ice packs may help. There will be ups and downs.
                      Don't sit for long periods at a time . It does seem to be uncomfortable for most that are fused to the pelvis.
                      Walking is key. It helps is so many ways.
                      And sleep when you can.
                      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
                        Quick update - sore thighs?

                        Just a quick update - Doing OK. Still fighting the balance between pain, drugs and constipation. Taking Dilaudid, Flexeril and Valium. Valium is the ticket for sleep. Taking DOK PLUS 8.6 which is a combination stool softener/laxitive. Supplementing DOK with Milk of Magnesia and ClearLax. Tried a suppository 2 times - sorta worked once, not so much the second time.

                        My incisions are healing very well (so they tell me! I only see the front).

                        The pain is different than I thought. Like getting hit by a baseball bat. And my hips and thighs are very, very sore. Muscle sore. Did any of you experience that? or know what it is?

                        Thanks for words of encouragement. I look forward to things getting better.

                        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


                        • #27
                          Miralax worked the best for me along with Senokot-S. Milk of Magnesia can work well too but it's much easier to overshoot with it. For me being on a daily schedule of the above worked best.

                          I'm glad to hear the Valium helps you sleep...sleep can be very elusive in the early days. You sound like you're doing great! Keep well ahead of the pain with ample pain control and you will be able to move around more. Several 5-10 minute strolls at this stage is a good goal. Sitting was very uncomfortable for me so I mostly avoided it at first. It does get better in time. I recall turning my first corner at around 11-12 days.

                          Thanks for keeping us updated and keep up the good work.
                          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


                          • #28
                            Originally posted by titaniumed View Post
                            John

                            The scraping is called partial corpectomy. I
                            Ed... I don't think that's correct. The surface of vertebrae are always "scraped" with a burr. They need to make the vertebrae to bleed in order to start the fusion process. A partial corpectomy is completely different. A corpectomy is removal of a vertebrae and adjacent disc. I think a partial corpectomy refers to removal of most of the vertebrae and disc.

                            --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
                              Hi Kathy...

                              The soreness in your hips and thighs is not at all uncommon. It could just be the interruption of the psoas muscle during the anterior portion of your surgery. It could also be trochanteric bursitis, which is also very common. Hang in there, it will improve.

                              As to John's question about how long to sit, we typically tell patients not to sit for more than 45 minutes at a time. After my revision surgery in 2011, I actually discovered I could sit in my recliner for hours without getting sore. Let pain be your guide.

                              Regards,
                              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


                              • #30
                                Originally posted by LindaRacine View Post
                                Ed... I don't think that's correct. The surface of vertebrae are always "scraped" with a burr. They need to make the vertebrae to bleed in order to start the fusion process. A partial corpectomy is completely different. A corpectomy is removal of a vertebrae and adjacent disc. I think a partial corpectomy refers to removal of most of the vertebrae and disc.

                                --Linda
                                Its possible due to layman lingo that surgeons will use with patients. Since it states the “partial corpectomy” procedures in my hospital reports, I did question my surgeon about it after and he mentioned scraping. When I mentioned using a dremel type tool to remove the end plates, his slightly defensive response was “only a small amount”. He did tell me that my diseased end plates were shot on all my lumbar levels and that they needed to be removed.

                                All I know is that it worked like a charm.....

                                It does seem that partial corpectomy “might” have been a cervical procedure from the start.....I wonder about this. Every time I looked for info on this subject matter, it was always referencing in the neck. See link
                                https://books.google.com/books?id=qa...plates&f=false

                                Years ago, there was not much info out there on this....Plenty of trauma related corpectomy info however.

                                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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