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SUGGESTIONS FOR THE HOSPITAL: what helped? What would have made it better?

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  • #16
    Originally posted by Marina63 View Post
    I was so completely and utterly out of it, I didn't need or want a thing. I brought an iPad thinking I would want to go online and write emails. None of that happened.
    I feel the same way. The only thing I wanted was another shot....

    We have had posters that have posted a few hours after surgery.....I on the other hand did not e-mail or post for months. It had to be really important for me to find my glasses and sit on major medications and try to make a decision and write something. I know that many feel the same as me on this. Computing and television were NOT a priority. Silence was a priority.

    When Led Zeppelin played a concert at Kezar Stadium in Golden Gate park on June 2nd 1973, the patients at UCSF were complaining about the noise..... I can’t say I blame them, but after all, it was Led Zeppelin......I would have grabbed my walker and walked over there. (smiley face)

    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


    • #17
      I agree with the other posters. The first week was a total blur in the hospital and the 2nd week in rehab wasn't much better. I could have gone with nothing I think but a toothbrush. You won't need entertainment. You can't stay awake that long or really concentrate on anything! Just think of it as a BIG nap. Janet
      Janet

      61 years old--57 for surgery

      Diagnosed in 1965 at age of 13--no brace
      Thoracic Curve: 96 degrees to 35 degrees
      Lumbar Curve: 63 degrees to 5 degrees
      Surgery with Dr. Lenke in St. Louis--March 30, 2009
      T-2 to Pelvis, and hopefully all posterior procedure.

      All was posterior along with 2 cages and 6 osteotomies.

      Comment


      • #18
        Originally posted by Doodles View Post
        I agree with the other posters. The first week was a total blur in the hospital and the 2nd week in rehab wasn't much better. I could have gone with nothing I think but a toothbrush. You won't need entertainment. You can't stay awake that long or really concentrate on anything! Just think of it as a BIG nap. Janet
        Haha! That's exactly what it was for me. One big nap!

        "Confusedmom

        Dr. Lenke's patients aren't allowed to shower for two weeks from the date of surgery. Many people get their periods shortly after surgery. I brought a squirt bottle, which helped with washing while on the commode. Also, they gave me these no-rinse shampoo kits that were awesome. They come in a bag, and you can get them at a drugstore. Your hair gets wet, but you don't have to rinse it out. "

        I guess I was allowed to shower early because I had no external stitches. I was glued shut. They removed the long dressing on day 3 or 4 which I remember I was a little concerned about but they assured me I was properly closed.
        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


        • #19
          Originally posted by leahdragonfly View Post
          Hi Susan,

          Sorry, I was being a little flippant, but what I meant to say was, you will not be looking your best after surgery! Which is not to say you will be too vain to Skype, what I meant was that it is doubtful that you will feel up to Skype-ing until after you get home.

          I'm glad to hear you're enjoying the pool exercise.

          Gayle
          I was trying to be funny. You are a role model for me. I look awful in the morning without surgery. I will keep up the swimming. Susan
          Send me a pm and tell me your Skype name!
          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


          • #20
            Tell me this isn't true

            I was reading that many people cannot lie on their side after surgery and must sleep on their back. I have never slept on my back because I wake up after a short time as my tongue slides back and obscures my trachea. So, what is happening after surgery?
            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


            • #21
              Originally posted by susancook View Post
              I was reading that many people cannot lie on their side after surgery and must sleep on their back. I have never slept on my back because I wake up after a short time as my tongue slides back and obscures my trachea. So, what is happening after surgery?
              Susan
              I was always a side-sleeper and still am, but after surgery, I woke up on my back. In ICU, I asked if I was allowed to lie on my side because I was vaguely uncomfortable on my back and the nurse brought a helper to help roll me to my side. Unfortunately that was even more uncomfortable so they rolled me back. After that, I slept on my back for about a month, then gradually went back to sleeping on my side with support from various pillows, propping me up.

              So you might need to sleep on your back for a short while, but perhaps if you have more than one pillow, slightly propped up, you might find the tongue problem doesn't happen. I swear by my U shaped pillow, it wraps round me and supports me. I still use 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


              • #22
                Susan, I had not slept on my back in over 15 years because, oddly, I would get nightmares and quickly wake with my heart thumping. That was one of my worries when I went in to surgery. To my surprise, everything changed after surgery. I slept soundly on my back, no nightmares at all and felt peaceful and as comfortable as could be expected.

                In the hospital, any time I wanted to sleep on my side, I would ring for the staff and someone would come help me position in the bed. They put a lot of rolled up blankets pressed against my back for support and placed another blanket between my knees. My legs were kept in inflating cuffs to help with blood circulation and I was still able to be turned on my side, even tethered like that. The staff at Duke Raleigh is amazing and I never had to wait longer than about a minute or two after pressing the buzzer for help.

                Once home, my bed wasn't nearly as comfortable but I was able to turn my head to one side and bunch up the pillow against my face for more support while on my back. Since my nose usually gets congested when I lay on my right side, I would turn my face to my left side and be able to breathe well. Having the pillow bunched up against the side of my head helped my neck from getting sore too.

                What will be the extent of your fusion? I am fused from T1 to sacrum and I'm still able to turn my head almost fully to the side while on my back. With a lot of pillow support, I was able to sleep on my side for about an hour around 4 weeks post-op. My hips and ribs bothered me the most because my mattress is super firm so it took over two months till I was able to sleep on my side comfortably for more than 2 hours at a time. I still sleep more on my back than any other position now.
                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


                • #23
                  Sleeping

                  Originally posted by susancook View Post
                  I was reading that many people cannot lie on their side after surgery and must sleep on their back. I have never slept on my back because I wake up after a short time as my tongue slides back and obscures my trachea. So, what is happening after surgery?
                  Susan
                  Susan, please try to remember that everyone is different. I am an avid side sleeper and slept on my side immediately after surgery. I had the nurses and my husband running every two or so hours to flip me from side to side. I was labeled a "mover".

                  I couldn't get up out of bed much less take a shower in the five days I was in the hospital while others say they showered 2-3 days after surgery. Your experience will be specific to you. It's good to get some ideas about what others have gone through but try not to worry too much. I didn't read this forum until after my surgery. I'm glad I didn't. I would have cancelled my surgery if I had : ))
                  50 years old!!!!!
                  Wore Milwaulkee Brace 1976-77
                  Original curve 36 degrees ( measured in the 70s)
                  Advanced to 61 degrees 01/2011
                  Surgery 07/11/2011
                  Fused T1-L2 (curve now in the 20s!)

                  Comment


                  • #24
                    Originally posted by susancook View Post
                    I was reading that many people cannot lie on their side after surgery and must sleep on their back. I have never slept on my back because I wake up after a short time as my tongue slides back and obscures my trachea. So, what is happening after surgery?
                    Susan
                    Scar position has a lot to do with this. Tongue sliding back almost sounds like sleep apnea......

                    I slept on my left side for around a year. My right shoulder was broken up, and the bandage on the posterior incision is thick after your surgery. This will heal and toughen up in time, as all scars do.

                    If there is a problem, its stomach sleeping with full fusion. I can do it now, but what happens is the neck is turned at 90 degrees and end up rolling out of that position anyway in a short time. I will never wake up on my stomach.

                    Soft down pillows are best because they can be easily shaped. You want to maintain a neutral neck position. Sleeping with your neck bent isn’t a great idea and you will feel it the next morning.

                    Sleeping is hard after surgery....... Getting comfortable is hard after surgery......Sitting is hard after surgery.
                    After you heal some, all these things gradually improve in time......you take it one day at a time.

                    Hospital beds are the worst.....I was complaining big time about my bed. It was probably a $50,000 bed, and sleeping in a BMW would have been easier. Ever try sleeping in a BMW? Its impossible.

                    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


                    • #25
                      Originally posted by JuliaAnn View Post
                      Susan, I had not slept on my back in over 15 years because, oddly, I would get nightmares and quickly wake with my heart thumping. That was one of my worries when I went in to surgery. To my surprise, everything changed after surgery. I slept soundly on my back, no nightmares at all and felt peaceful and as comfortable as could be expected.

                      In the hospital, any time I wanted to sleep on my side, I would ring for the staff and someone would come help me position in the bed. They put a lot of rolled up blankets pressed against my back for support and placed another blanket between my knees. My legs were kept in inflating cuffs to help with blood circulation and I was still able to be turned on my side, even tethered like that. The staff at Duke Raleigh is amazing and I never had to wait longer than about a minute or two after pressing the buzzer for help.

                      Once home, my bed wasn't nearly as comfortable but I was able to turn my head to one side and bunch up the pillow against my face for more support while on my back. Since my nose usually gets congested when I lay on my right side, I would turn my face to my left side and be able to breathe well. Having the pillow bunched up against the side of my head helped my neck from getting sore too.

                      What will be the extent of your fusion? I am fused from T1 to sacrum and I'm still able to turn my head almost fully to the side while on my back. With a lot of pillow support, I was able to sleep on my side for about an hour around 4 weeks post-op. My hips and ribs bothered me the most because my mattress is super firm so it took over two months till I was able to sleep on my side comfortably for more than 2 hours at a time. I still sleep more on my back than any other position now.
                      Julia Ann:! Fusion will be T3 to sacrum. bummer........Susan. Ps: thanks for all of your information. It seems that I am grasping at straws in trying to somehow control the surgery situation.
                      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


                      • #26
                        Originally posted by titaniumed View Post
                        Scar position has a lot to do with this. Tongue sliding back almost sounds like sleep apnea......

                        I slept on my left side for around a year. My right shoulder was broken up, and the bandage on the posterior incision is thick after your surgery. This will heal and toughen up in time, as all scars do.

                        If there is a problem, its stomach sleeping with full fusion. I can do it now, but what happens is the neck is turned at 90 degrees and end up rolling out of that position anyway in a short time. I will never wake up on my stomach.

                        Soft down pillows are best because they can be easily shaped. You want to maintain a neutral neck position. Sleeping with your neck bent isn’t a great idea and you will feel it the next morning.

                        Sleeping is hard after surgery....... Getting comfortable is hard after surgery......Sitting is hard after surgery.
                        After you heal some, all these things gradually improve in time......you take it one day at a time.

                        Hospital beds are the worst.....I was complaining big time about my bed. It was probably a $50,000 bed, and sleeping in a BMW would have been easier. Ever try sleeping in a BMW? Its impossible.

                        Ed
                        Thanks....guess I will just play this by ear. 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


                        • #27
                          Agreed re the hospital bed. Well the mattress anyway. It had a big hollow from having thousands of bottoms sitting upright which was ok when I was awake and the head of the bed was up, but at night when I lay the bed back down, my now straight, rigid back hovered over this damned hollow. I complained, they brought another mattress; that too had a hollow. Then my partner marched in with a huge roll on his shoulder - he brought in a very thick foam mattress overlay. I fully expected the hospital to object but they didn't. It helped, but despite being thick and firm, it still sunk into that hollow.

                          Getting home on Day 19, I was never so happy with my lovely, comfortable bed! And that was the end of my surgical pain. Psychological because I'd finally got home? Or a level, comfortable bed? I don't know.
                          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


                          • #28
                            sleeping

                            Hi Susan,

                            I am a side sleeper too, and I continued to sleep on my side after surgery. I was extremely uncomfortable and unable to sleep in my own bed, because it was too soft. It was a Temperpedic, and it had a slight body impression in it that made it so it wasn't perfectly flat. It felt way too soft and unsupportive after my first surgery (T8-sacrum/posterior). I had a rented hospital bed that was very firm and flat, and I slept on it for the first 5-6 weeks before I could stand my own bed.

                            After my revision I slept for about a week on the hospital bed, but I was able to return to my own bed after that, and sleep on my side.

                            Almost everyone seems to go through a period of very poor sleep/insomnia after surgery. It is normal and will improve. You will sleep whenever you can.

                            Ed gave you good advice about the many soft pillows. I used one between my knees, and a king-sized one behind my back (I still use this). It was very hard/painful for me to turn over in bed the first few weeks. What I did in my hospital bed was have a pillow on each end, and I kept the blankets untucked. When I needed to turn over several times per night, I would logroll/pivot up into a sit, then pivot/logroll down onto my other side. This worked really well for me.

                            I am not sure about UCSF, but at OHSU Dr Hart sends all his patients to physical therapy about a week before surgery, to learn how to move correctly within your activity restrictions. They will make sure you can logroll correctly and do the other things you need to do in the early days post-op. They also gave me a small guide about progressive activity in the first 8 weeks post-op. This might be something to ask about at UCSF. I think it is helpful for everyone.

                            One foot in front of the other my friend, you can do this! I don't Skype but I am always happy to hear from you via e-mail.

                            Take care,
                            Last edited by leahdragonfly; 02-02-2013, 02:46 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


                            • #29
                              Susan,
                              I couldn't sleep at night and didn't want to bother my husband or mother in law when they stayed so my iPad was a nice addition to have. I watched showes, or listened to them because I couldn't focus well.

                              Chap stick for sure! And normal toiletries. I also took a robe for when all the tubes and iv's were removed (although, that didn't happen till the day I went home. I also had the cath in until the night before I went home.)

                              Don't over think things. If you don't bring it, they have it. Just plan on sleeping, walking, sleeping, walking, and more sleeping. Maybe add a few stairs to climb in pt if you had a therapist like mine, lol!

                              I pray daily for you!
                              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


                              • #30
                                Originally posted by leahdragonfly View Post
                                Hi Susan,

                                I am a side sleeper too, and I continued to sleep on my side after surgery. I was extremely uncomfortable and unable to sleep in my own bed, because it was too soft. It was a Temperpedic, and it had a slight body impression in it that made it so it wasn't perfectly flat. It felt way too soft and unsupportive after my first surgery (T8-sacrum/posterior). I had a rented hospital bed that was very firm and flat, and I slept on it for the first 5-6 weeks before I could stand my own bed.

                                After my revision I slept for about a week on the hospital bed, but I was able to return to my own bed after that, and sleep on my side.

                                Almost everyone seems to go through a period of very poor sleep/insomnia after surgery. It is normal and will improve. You will sleep whenever you can.

                                Ed gave you good advice about the many soft pillows. I used one between my knees, and a king-sized one behind my back (I still use this). It was very hard/painful for me to turn over in bed the first few weeks. What I did in my hospital bed was have a pillow on each end, and I kept the blankets untucked. When I needed to turn over several times per night, I would logroll/pivot up into a sit, then pivot/logroll down onto my other side. This worked really well for me.

                                I am not sure about UCSF, but at OHSU Dr Hart sends all his patients to physical therapy about a week before surgery, to learn how to move correctly within your activity restrictions. They will make sure you can logroll correctly and do the other things you need to do in the early days post-op. They also gave me a small guide about progressive activity in the first 8 weeks post-op. This might be something to ask about at UCSF. I think it is helpful for everyone.

                                One foot in front of the other my friend, you can do this! I don't Skype but I am always happy to hear from you via e-mail.

                                Take care,
                                You are an awesome friend. Thanks for the sleep info and other stuff. 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

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