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

  1. #16
    Join Date
    May 2008
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    reno,nevada
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    4,104
    Quote 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 canít 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 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF 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

  2. #17
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    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.

  3. #18
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    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
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    Quote 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

  4. #19
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,587
    Quote 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 Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe 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 Spinal Cord Injury T4,5 sec to PJK
    2015: Revision 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

  5. #20
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
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    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 Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe 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 Spinal Cord Injury T4,5 sec to PJK
    2015: Revision 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

  6. #21
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
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    3,263
    Quote 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

  7. #22
    Join Date
    Nov 2012
    Posts
    88
    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

  8. #23
    Join Date
    Feb 2011
    Location
    Lilburn, GA
    Posts
    201

    Sleeping

    Quote 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!)

  9. #24
    Join Date
    May 2008
    Location
    reno,nevada
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    Quote 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 isnít 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 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF 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

  10. #25
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,587
    Quote 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 Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe 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 Spinal Cord Injury T4,5 sec to PJK
    2015: Revision 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

  11. #26
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,587
    Quote 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 isnít 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 Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe 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 Spinal Cord Injury T4,5 sec to PJK
    2015: Revision 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

  12. #27
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    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

  13. #28
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163

    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 at 03:46 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

  14. #29
    Join Date
    Jul 2012
    Location
    Warsaw, MO
    Posts
    373
    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

  15. #30
    Join Date
    Jan 2012
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    Yacolt, WA
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    Quote 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 Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe 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 Spinal Cord Injury T4,5 sec to PJK
    2015: Revision 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

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