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

  1. #31
    Join Date
    Jan 2012
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    Yacolt, WA
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    Quote Originally Posted by tae_tap View Post
    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
    Tamena, you know me well! One way that I have chosen to control my surgery situation, which seems overwhelming to me, is to plan everything and to control the things that I can control. Deep down, I am a little bit scared. I do have mega confidence in my surgeon, but too many pieces seem to be still left unsaid. Due to distance, I have only seen her once. Granted she did take an hour with me and my son, but I am still confused on exactly what will happen. I originally said to myself, that once I made the date for the surgery, I would just relax and trust my surgeon. That sounded great on paper, but I cannot feel it as much as I try.

    I went out to Saturday market today in Puerto Vallarta with my husband. I sat down so many times that I decided to time my pain. After sitting down for 10 minutes, I can go for 7 minutes before I start to be get a feeling of severe tightness in my lower back and sciatic pain on the right. At ten minutes, my right thigh pain is unbearable and the back pain/tightness in unbearable. Then I sit again. It has become quite apparent that I do need surgery. I cannot sit down every 10 minutes for the rest of my life!
    Not more to say. I am confused. 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

  2. #32
    Join Date
    Nov 2012
    Posts
    88
    Susan, you said " I cannot sit down every 10 minutes for the rest of my life!" Oh my goodness, you poor dear! If that is how you are functioning now, then you're going to be thrilled with how things work out after surgery! I didn't time my walking before surgery but I couldn't walk long at all. I couldn't sit long, I couldn't lay down long, basically there was no time I was comfortable. Surgery changes everything. You are going to be SO glad! I hope you post again several weeks after your surgery. We all will want to know how you are doing.

    Suggestions for the hospital... I had my sons write in a notebook starting the day of surgery and during the week I was in the hospital. They wrote notes of when I first walked, things I said, etc, at my request because I knew I would never remember afterward. I slept a lot. I fell asleep mid-sentence a lot. I remember talking to my mom on the phone and she said "you're falling asleep on me, aren't you" but I couldn't answer because I was falling asleep so my son took the phone and talked to her. You will be doing a LOT of sleeping after surgery. That will be good. And there will be times that you don't even remember later. In my notebook, the boys had written that I practiced stepping in an out of a tub during therapy. I have absolutely no memory of that.

    I continued to write in the notebook occasionally for the next three months after surgery. One time I wrote a couple things I wish I had done differently:
    - - - ALL pre-surgical patients should do deep breathing exercises at least 1 month before surgery. I experienced a "stitch in side", very severe within seconds of standing. Deep breathing exercises would have helped to greatly reduce rib pain!
    - - - Eat a soft or liquid diet 2 days before surgery. Pick soft items from the hospital menu, especially fruits and vegetables for the first week to help with constipation.
    - - - Let nurses know immediately that you want a low-sodium (cardiac) menu. Less sodium = less thirst later.
    - - - Leg compression wraps helped VERY much for fibromyalgia leg pains since I walked so little during the hospital stay.
    - - - Rent an adjustable hospital bed just like the one at the hospital. Hard bed at home was miserable!

    When the nurses or therapists weren't working with me, I didn't do a single thing at the hospital other than fall asleep repeatedly for a week. I didn't want TV or anything. I just asked for pain medication and slept. It felt good to sleep because I slept poorly for months before surgery any way.

    Every patient is different and it is impossible to predict what you will want to do or what you will be able to do after surgery. It's best to be prepared for activities such as reading if you want, so take a book or other activity. But also expect that you just might want to sleep or visit with friends or family instead.
    Last edited by JuliaAnn; 02-03-2013 at 12:46 AM. Reason: spelling
    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

  3. #33
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,591
    Quote Originally Posted by JuliaAnn View Post
    Susan, you said " I cannot sit down every 10 minutes for the rest of my life!" Oh my goodness, you poor dear! If that is how you are functioning now, then you're going to be thrilled with how things work out after surgery! I didn't time my walking before surgery but I couldn't walk long at all. I couldn't sit long, I couldn't lay down long, basically there was no time I was comfortable. Surgery changes everything. You are going to be SO glad! I hope you post again several weeks after your surgery. We all will want to know how you are doing.

    Suggestions for the hospital... I had my sons write in a notebook starting the day of surgery and during the week I was in the hospital. They wrote notes of when I first walked, things I said, etc, at my request because I knew I would never remember afterward. I slept a lot. I fell asleep mid-sentence a lot. I remember talking to my mom on the phone and she said "you're falling asleep on me, aren't you" but I couldn't answer because I was falling asleep so my son took the phone and talked to her. You will be doing a LOT of sleeping after surgery. That will be good. And there will be times that you don't even remember later. In my notebook, the boys had written that I practiced stepping in an out of a tub during therapy. I have absolutely no memory of that.

    I continued to write in the notebook occasionally for the next three months after surgery. One time I wrote a couple things I wish I had done differently:
    - - - ALL pre-surgical patients should do deep breathing exercises at least 1 month before surgery. I experienced a "stitch in side", very severe within seconds of standing. Deep breathing exercises would have helped to greatly reduce rib pain!
    - - - Eat a soft or liquid diet 2 days before surgery. Pick soft items from the hospital menu, especially fruits and vegetables for the first week to help with constipation.
    - - - Let nurses know immediately that you want a low-sodium (cardiac) menu. Less sodium = less thirst later.
    - - - Leg compression wraps helped VERY much for fibromyalgia leg pains since I walked so little during the hospital stay.
    - - - Rent an adjustable hospital bed just like the one at the hospital. Hard bed at home was miserable!

    When the nurses or therapists weren't working with me, I didn't do a single thing at the hospital other than fall asleep repeatedly for a week. I didn't want TV or anything. I just asked for pain medication and slept. It felt good to sleep because I slept poorly for months before surgery any way.

    Every patient is different and it is impossible to predict what you will want to do or what you will be able to do after surgery. It's best to be prepared for activities such as reading if you want, so take a book or other activity. But also expect that you just might want to sleep or visit with friends or family instead.
    Love the diary idea during drug haze phase in hospital. Thanks for sharing great ideas and your experiences. 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

  4. #34
    Join Date
    May 2012
    Location
    El Centro, CA & Baja California, Mexico
    Posts
    193

    at the hospital and at home (a small hose to rinse off)

    You will need the slippers and a robe to cover up when they make you get up and walk.

    a gun to shoot the beeping machine when the IV lines have bubbles - you can call the nurse but it will take like an eternity and they are very loud.

    a person with you at night (preferably always) because the staff is less than during the daytime

    I discover buckwheat hull pillows and it was a savior as it accommodates my neck and head much better than the 300 pillows they have that are covered with plastic.

    The dry shampoo is great the first week but I was not allowed to shower for 2 weeks so the second dry shampoo added to the first makes your scalp feel like there are bugs growing. I would walk to the sink and use a wet face towel to wet my head in the morning over and over.


    The best was a handheld little hose that are made to attach to the toilet pipe from the wall. My husband reluctantly installed one as I remember growing up in Panama and everyone would have a bidet or a hose. Since you can't really wipe yourself because (at least my arms are about 5 inches too short) and without bending or twisting etc... the hose gadget is the best best thing EVER to rinse both front and back!!!
    Gardenia
    Baja California, Mexico & El Centro, Ca
    pre-surgery 75° and 89° - post ?
    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

  5. #35
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978
    Susan-- similar to JuliaAnn, my husband kept a notebook of everything in the hospital and also took pictures... some others have taken videos to help others along or just to chronicle their journey. As far as what I actually needed in the hospital-- not much! I took things like a bathrobe and slippers, but they just used another dressing gown turned the opposite direction for a "bathrobe" for when I was walking the halls... and they really wanted me to use their traction socks to walk in, so no slippers. I was not at all interested in any books or tv or (if I had had anything of the sort with me) electronics. I did not need anyone with me at night on the nights my husband did not stay, as the nurses at my hospital were very attentive. I guess that varies a lot. We lived 2.5 hours away and he needed to check on things at work some of the time. I was perfectly fine on my own. I did not even think about brushing my teeth or doing anything like my hair for awhile (aughhh!) -- it just hadn't occurred to me until a nurse gently mentioned my teeth. Hee hee. If you look at my hospital pictures you can tell it didn't matter to me what I looked like at all until the very end of my 11 day stay. (big smile!) Everyone is different.

    I too didn't shower for the time I was in the hospital-- just sponge baths. When I got home I had a shower seat and shower wand, and that was nice, but didn't use it for a few more days.

    We kept a separate daily pill journal on the kitchen counter where the meds were so we couldn't get confused about whether I had taken mine or not.

    The notebook I had in the hospital is the same one I had used previously for my visits to the surgeon, as suggested by David Wolpert. I still use it and jot down any questions/concerns for my next appt. and write down anything he says that I think is something I should remember. It's so easy to look back to my hospital time and see when they started having me climb stairs, or when they fitted me for my brace, etc. Since I also kept the med info, I can see when my dosages changed and when I weaned off...

    In general over the years of watching what people write on the forum, most have said they took way more than what they needed or used (like PJs). Most said they wished they had chapstick. I am an avid reader but there is no way I would have read a book (although I took some). On the other hand, I remember someone who was on her phone or laptop within hours.

    Sleeping-- I had always been a tummy sleeper and a side sleeper. Absolutely never a back sleeper. After my surgery I could not do either of those. It was not until this past year that I could sleep on my side. But I found sleeping on my back quite peaceful. I cannot get to a tummy position, I think because I go up to T2. It even doesn't work with no pillow. Oh well. The nurses in the hospital were surprised I couldn't handle sleeping on my side, so I'm sure you'll have no problem.
    67 and plugging along...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  6. #36
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,591

    Surgery 11days away!

    Surgery is 11 days away and I am reviewing hospital survival. Irina is doing well now postoperative....thank goodness. I do not personally know anyone who has had surgery with Dr. Hu, so her success was very reassuring. Joanne never hooked me up with other women my age who have had surgery with Dr. Hu. I will send her an email tomorrow and maybe she can still connect me up next week, at least we can talk by phone, maybe a lunch together. I have never seen anyone move with a fusion to the sacrum and must rely on Irina's demo as she had observed. Sorry that I didn't watch Gayle move when I saw her at OHSU, but that was so long ago and I was in semi-denial about surgery.

    I will be in Oakland for a week before surgery and have time to swim more at the Y as well as do last minute things.

    I am still hoping for a private room, so that either my husband, brother, son, or daughter will be able to stay with me. When I do not feel well, I am sure that I make a very poor roommate, so I hope that I have a single room. My relatives have learned to love and tolerate me...besides many of them owe me!

    I have been bending my back as much as possible as my last efforts to be flexible. I used to do backbends and kick overs, so am fairly flexible. I was on a high school gymnastics team (in the early 1960s). I also used to do flip turns in the pool. I will try those again in the week before surgery for old time's sake. The PT at OHSU that I saw said that I would do well postoperatively since I was so flexible. We'll see!

    Still cannot envision the toilet hygiene with a fusion to sacrum. I bought the hygiene wand that is sold at Walgreens.

    So, anyone having anymore recommendations, please add them. So far, the important things seem to be: robe, slippers, lip stuff, iPad, something to tie the buzzer, a relative in my room to help me, big t shirts, pants with elastic, toothbrush/paste, comb, brush, braided hair, and a journal for relatives to write in while I am recovering. That's probably overkill.

    Thanks again to all that survived the postoperative experience with varying amounts of grace and have shared their experiences, 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

  7. #37
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Susan,
    Wow! I was just reading about your flexibility. I would imagaine that you will get an amazing correction. My back was already fusing in the crooked position which is why I needed so many osteotomies in order to get as straight as possible. Dr. Lenke's office had a "spine kit" that I purchased. I truly never thought I would need it, but the kit had long, plastic tipped tongs to use for wiping (I hate being so graphic) I definitely needed to use it for quite a while. I also bought lots of packages of flushable wipes. I remember reading in David Wolpert's book, at least I think that's where I read it, that as he went through recovery and improved in so many ways, that it was a celebration each time he eliminated items he no longer needed. First, it was the pain pills, then the elevated toiled seat, then the multitude of pillows every place, the tongs, the sock aide, the long handled shaver, the the grabbers in every room, etc. The road to total recovery is not a quick one, but for me, was one of many small celebrations along the way. Getting back to playing golf after waiting 15 months was pretty darn special, too. My first round of golf video is in my signature if you are interested. Good luck. You are prepared!
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  8. #38
    Join Date
    May 2012
    Location
    Columbia, SC
    Posts
    75
    Susan, I think I have mentioned before, but I found a "sippy" cup with a lid to be very helpful after surgery for a couple of weeks after surgery. One like little children use. Drinking with a straw was harder when lying down after surgery as it would drip somewhat. Someone else suggested this on the forum several years ago. I never had a need for the hygiene wand and maybe you won't either.

    I have been and will continue praying for you.
    Jane

  9. #39
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Sorry, I just realized your thread was about what to take to the hospital.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  10. #40
    Join Date
    Nov 2012
    Posts
    88
    Like Jane mentioned, I used a cup with a bendy straw but had to be too careful about tipping the cup for a couple weeks. I now keep a sport water bottle by the bed all the time.
    I use a Camelbak-Eddy-Bottle, 24 oz. It's easy to drink from even while lying down. I'm not sure if a hospital allows a drink bottle or not but you might check. It's so much easier to drink from than a cup with a bendy straw.
    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

  11. #41
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    974
    I took headphones so I could listen to audiobooks on my iPhone. Also a camera (well, your relatives should have that). Depending on your showering rules, possibly no-rinse shampoo. They may also have it for you.

    Best wishes!
    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.

  12. #42
    Join Date
    Aug 2019
    Posts
    99
    Quote Originally Posted by Confusedmom View Post
    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 did use my iPhone and headphones. (iPhone= #1 recovery item!!!) For the hotel stay after the hospital, I had an eggshell foam mat for the bed.

    My husband and mom were essential. I had someone with me round the clock. Two things. I thought I was having a heart attack when I woke up from anesthesia. Go figure--me with the anxiety. They did the various tests to rule out that I wasn't. But I continued to have pain in my chest for a few days. I think it was from my ribs shifting to match my back. They said it could also have been from the bolster you lie on during surgery.

    Also, they put me on a critical floor after surgery because ICU was full. The next day, the nurses tried to remove the catheter to my bladder. I pitched a fit because that would have meant I would have had to get up every time I needed to go to the bathroom ( which is a lot because they pump you full of fluids). I couldn't stand yet, let alone walk to the bathroom. Turned out Dr. Lenke did NOT want the catheter removed. So, the lesson here is don't be afraid to question things if something seems off. I made them call Dr. Lenke, and glad I did!

    Only other thing was slippers and I wore the same loose-fitting sweatsuit out that I wore in. Make sure your clothes have give because you likely will be swollen. I used a double- layer tank top instead of bras for a while. Some people prefer button-down shirts, but I didn't have a problem getting them over my head. (T2 people might have a harder time.)

    Honestly, I slept most of the time in the hospital and don't remember much of it. Don't be afraid to ask for more pain meds if your pain isn't well controlled. It should be!!

    Best,
    Evelyn
    Evelyn, the shampoo kit sounds wonderful but I haven’t seen these in anywhere- do you happen to remember where you purchased them at? Thanks Nancy

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