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  • Surgery Window - Details on the 3 week time period

    It is my intention to record here some of the tips and experiences that I think might help someone else in the critical three weeks. Yes, circumstances differ, but knowing other people’s experiences helped me to gauge my own.

    This is one of the most important three week periods in our lives and we are drugged and in unfamiliar surroundings and – to some extent – at the whim and competency of people that we do not know. The better we have internalized what to expect, the more likely we are to maximize the options and solve the issues.

    For me, I define the three weeks as beginning Friday before the Monday surgery – the day my “central line” went in.

    Setting
    My surgery was posterior fusion T4 to the sacrum, performed by Lawrence Lenki at Barnes Jewish Hospital in St. Louis. Because St. Louis is hours from home, we rented an apartment. Your results and experiences will differ, if you are near home.

    Also, I had added to an active exercise program in the six months that I waited for surgery. We called the extensive efforts at the gym and in water aerobics “pre-hab.” It made a huge difference.

    Family and Friends and Caregivers
    Have someone wait with your spouse or primary caregiver during surgery. The more involved that primary person is with your condition, the less able he/she will be to cope during the surgery. Do not, however, have an army.

    Have someone with you 24 X 7 in the hospital, if possible. We mostly achieved this with primary plus one. Most medical help responded very positively, as such coverage makes for faster improvement and an easier time for the staff. Things that the bedside sitter can do include:

    • Find the morphine button if you lose it.
    • Find the call button if you lose it. (You will, initially, be unable to focus well or turn without help and losing the call button may be a matter of having it a ½” from where you expect it to be.)
    • Write down the names of nurses, techs, and others … and even what you think of them. It can get really overwhelming as to who is coming and going. Not everyone in your room is qualified to help you with everything.
    • Write down all advice/instructions, as it can be hard to remember and some inconsistencies ought to be checked out.
    • Find out what’s going on, if a call on the call button results in no action.
    • Protect your sleep from unnecessary interruptions … rarely, but sometimes possible.
    • Make lists of questions you want to ask at the next rounds or therapist visits.
    • Keep track of any paperwork you are given.
    • Cheer your progress.
    • Share conversation when sleep eludes you. (With both our daughter and our “almost daughter,” I had late night conversations that I will cherish for their own sake.)

    You will also have many people who want to be updated. I created a mailing list and added people as they requested updates. Beginning the night of the surgery, my husband sent mail to the list. I enjoyed getting the responses, people who really care were relieved, and the notes themselves are treasures to preserve. It was quite a burden, at times, for my husband; but he also benefited from the summarization and reflection.

    Responsibility
    Give yourself up to the competence of your surgeon on the day of surgery. Resume primary responsibility, the next day.

    • Tell people what you need.
    • Tell people anything that seems unusual.
    • Let people hear your real gratitude, but do not hesitate to ask for help.
    • Reject that which doesn’t make sense. Consult and determine why it doesn’t make sense and what the correct approach should be.

    Interruptions
    Your hospital stay will be busy. Interruptions and activities will vary with the hospital and your progress, of course. Here are some of mine:

    • Nurse or tech at the beginning and ending of shift
    • Someone to change bags on the IV for fluid, antibiotics, “food substitute”, etc. or check the oxygen supply
    • Someone to respond to alarms on any of this (My oxygen supply alarm went off sometimes with nothing more than my raising the finger that had the monitor on it. I was on and off oxygen until about day 4 or 5. Hated it.)
    • Someone to empty container for catheter (The catheter is generally left in until it is obvious that you can make it to the bathroom. I actually asked for it to be left in for one last night so as not to overburden the night with up and down and possible opps. I think that was night 3 (Wednesday) after the surgery.)
    • Meds delivery (You will get both new meds and your usual meds from the nursing staff.)
    • Vital signs checks
    • Blood sugar checks (No pain at all while you are still on morphine, but you do tend to run out of fingers.)
    • Insulin shots to counteract the sugar levels caused by the gunk in the “food substitute”
    • Fellow(s) – if your surgeon has Fellows – doing rounds (very early morning)
    • Surgeon and trailing personnel doing rounds (Hey, I actually managed to get smiles from Lawrence Lenkee during rounds.) (still early morning)
    • Rounds by surgeon’s scheduling nurse or other person assigned such duty (generally afternoon)
    • Rounds by hospital’s patient rep or similar post
    • Cleaning people (in general, miraculously unobtrusive and still effective)
    • PT – physical therapy, twice per day
    • OT – occupational therapy, once per day, to learn how to take care of yourself (more later)
    • Flower delivery, visitors, and such (I had no visitors beyond my primary support.)
    • Someone to help you “log roll” – side to back, back to side, … (Position changes every two hours are recommended.)

    Physical Therapy
    Embrace the physical therapy visits, as this is your opportunity to learn what will help you move forward. Physical therapy goals will likely be
    • ICU, day one  no PT
    • Day two  log roll, get out of bed, sit in chair for an hour (After this, you may be cleared for catheter removal.)
    • Day three  walk into the hall (with walker)
    • Walk further down the hall
    • Walk further yet
    • Ect.
    • Before checking out, at least one time at walking to a place where you can practice stairs. BJH has a device with four 3” steps up and two 6” steps down. Up was easy for me, the steeper stairs seemed very steep the first time. Most stairs in homes are 7 – 8” rises.

    Occupational Therpy
    Occupational therapy is also important. For me, the OT person tended to show up after the PT and I tended to fall asleep on her.

    • The most critical step in OT is using the toilet and the wiper assist.
    • There is also a reaching device that can help you pick up things from the floor or pull on pants.
    • None of the other devices seem to have continuing value for me, but you might find them useful.

    Hygiene in General
    Hygiene becomes additionally important, of course, to prevent infection. It can also be your best friend by making your skin feel better, refreshing you, and providing some babying.

    Things that may or may not increase your interest in hygiene:
    • I have always needed to wash my hair every day or so or I begin to hurt in the scalp and face.
    • Since surgery, I have had a great deal of difficulty with temperature swings and sweats that soak me, particularly around the head. These are easing off as I approach three weeks post surgery, but I understand that I am not unusual in this.
    • Bathing is a time to inspect the body. With the help of my caregivers, I found and addressed some surprises.
    • The ritual of shampooing, bathing, and brushing teeth can be soothing. (It’s exhausting, too, but everything is.)

    Modesty
    Modesty is a pleasant social convention that can be ignored if doing so carries sufficient reward.

    Skin
    Until two weeks after surgery, getting the back wet is not approved. (Having the water soluble stitches dissolve early is obviously not a good idea.) OT assumption is that I would first soap and then rinse all but my legs and someone else would do the legs. I was spoiled and a caregiver did it all for me. Placing the potty chair in the shower made it safer than it would otherwise have been.

    After two weeks, when it was okay to shower, my husband just showered with me. (Not the experience that we would have giggled over when we were younger, but a good sound answer and a deep pleasure of another sort.)

    Hair
    First step was a really short – and very good – haircut.

    BJH (my hospital) supplied shampoo caps. Heat one in the microwave for 15 secs, put it over the hair and massage. The shampoo is included. There is no need to rinse. To our amazement, it worked magnificently. I couldn’t get both hands up to do the scrub, but I could talk my care givers into this marvelous treat. Some 24 hour periods, I managed to get two of these! We ordered more of these for after hospital release.

    Once released from the hospital, we could put the potty chair thing in the shower and wrap me up to protect the back from getting wet and a care giver could wash my hair. The wrap consisted of a towel around my shoulders with a plastic trash bag (with a head hole) over that and another towel over it all. It worked.

    This tremendous joy, but tiring experience, was replaced at two weeks with a real shower and shampoo.

    Even after the shower was approved, twice in the late evening, I was itching from being sweaty and my husband provided another shampoo cap shampoo. YES! I have been spoiled.

    <Ran into length limit ... to be continued>
    Cheryl

    Double major idiopathic scoliosis from 1988; progressed to 53 degree thoracic/65 degree lumbar.
    Corrected (with posterior surgery, fusion from T4 to the sacrum, & instrumentation) on August 4, 2008
    by Lawrence Lenke to within 10 degrees.

    Love this forum! Thanks, all!

  • #2
    <Continued from previous ... due to length limits>
    <Skin and Hair sections are repeated from previous.>


    Skin
    Until two weeks after surgery, getting the back wet is not approved. (Having the water soluble stitches dissolve early is obviously not a good idea.) OT assumption is that I would first soap and then rinse all but my legs and someone else would do the legs. I was spoiled and a caregiver did it all for me. Placing the potty chair in the shower made it safer than it would otherwise have been.

    After two weeks, when it was okay to shower, my husband just showered with me. (Not the experience that we would have giggled over when we were younger, but a good sound answer and a deep pleasure of another sort.)

    Hair
    First step was a really short – and very good – haircut.

    BJH (my hospital) supplied shampoo caps. Heat one in the microwave for 15 secs, put it over the hair and massage. The shampoo is included. There is no need to rinse. To our amazement, it worked magnificently. I couldn’t get both hands up to do the scrub, but I could talk my care givers into this marvelous treat. Some 24 hour periods, I managed to get two of these! We ordered more of these for after hospital release.

    Once released from the hospital, we could put the potty chair thing in the shower and wrap me up to protect the back from getting wet and a care giver could wash my hair. The wrap consisted of a towel around my shoulders with a plastic trash bag (with a head hole) over that and another towel over it all. It worked.

    This tremendous joy, but tiring experience, was replaced at two weeks with a real shower and shampoo.

    Even after the shower was approved, twice in the late evening, I was itching from being sweaty and my husband provided another shampoo cap shampoo. YES! I have been spoiled.

    Teeth
    My teeth and gums may come out of this improved. It’s just so satisfying to get this sort of detail done.

    At my last dentist visit before the surgery, I thought to ask what to do if I couldn’t raise both arms and maneuver to floss. The hygienist recommended a Reach brand device that is similar to a toothbrush handle, but – instead of bristles – holds a U-shaped thing that braces the floss perfectly. One-handed and without a great deal of twisting, you can floss very well.

    We also have one of those marvelous SoniCare toothbrushes. Add toothpaste, a glass of water for rinsing, and a cup for spitting and there is the whole kit.

    Other Grooming
    While my “almost daughter” was spoiling me, she also gave me a pedicure. What a treat and something that continues to cheer.

    Blow drying the hair is also a treat, but not totally necessary once there is no risk of the wet hair wetting the back.

    Exercises
    The physical therapist that Dr. Lenke relies on says walk, walk, walk.

    Even while still in ICU, I also did the foot wiggles that are used to check how things are doing during and right after surgery – toes down (“push on the gas”), “toes to the nose” – and the push the knees out against resistance and push them in against resistance that are also sometimes used to check that all the nerve messages are getting where they need to be. Then, in a flood of relief at how well I was doing, I did a few modest lifts of first one foot and then the other. I asked Dr. Lenke about it when he came by because it hurt just a little on one side. He said, “If it hurts, don’t do it.” He also seemed amused.

    About time for release, someone handed me some sheets created by the physical therapist. There are some very modest exercises to be done holding onto a counter (or ballet bar?) that I have found no problem.

    I have avoided unnecessary exercises for the torso area, as my muscles there have some truly nasty things to say about the whole experience. Then, I called the physical therapist to ask some questions and she said to start the arm et al exercises at six to eight weeks. Oh.

    Meanwhile, walk, walk, walk. I wish that we had pre-measured some distances.

    Nasty Surprises
    Some surprises are individual. Others are common. In most of the latter, we heard about them and didn’t take them seriously enough.

    My dreadful surprise that you probably won’t have is an allergy to tape. Tape was everywhere during surgery and my response – delayed by several days – set me back significantly.

    Another individual choice that may or may not have been important is that we asked for a non-latex catheter. My daughter is allergic to latex. I have shown no signs and didn’t ask for a latex free room, but it did seem that we didn’t want to take chances with the catheter.

    Bloating is way more serious than we anticipated. See my notes on clothes to follow.

    Anyone who has had major surgery knows to anticipate a struggle to get the bowels working again. A stool softener and time solves the issue. However, I wish that I’d understood that it would take several days and not started worrying about “soiling myself” with the first gas pangs. It helps if your care givers can suspend normal manners and cheer for gas and belching.

    Sweating – particularly about the head and shoulders – has been way more of a problem than I anticipated. Apparently, the meds – and, I suspect, the general assault on the body – cause the body trouble with heat regulation. You may be really eager to pull the covers up and, only a short time later, you may be throwing everything off and sweating profusely.

    Clothes
    For the hospital, I had a robe that comes to my knees, is cotton, is mid-weight, zips up the front (no waist tie), and even has pockets. Perfect.

    I also have a pair of Ecco brand sandals that fit perfectly, but have Velcro adjustable straps to adjust to TED hose or bloating. They also have sturdy, grip soles and soft “mole skin” on the straps against my skin. The Velcro straps also mean that I can put them on and off. They even look good. Again, perfect.

    You need nothing else while in the hospital. The number of tubes and wires that follow you everywhere make hospital gowns the only rational answer. Besides, your care givers will start doing laundry soon enough.

    Your own gowns and the robe and good shoes are all you will want for most of the time at “home.” Brace yourself for the remaining comments.

    You will be very unusual if you do not bloat.

    For leaving the hospital and any outings that you attempt in the first few weeks, assume that the following applies.

    • You will not want to wear bras. Camisoles or soft t-shirts may work for you, instead.
    • You will not be fond of underpants, if you have a long fusion.
    • You should have slacks available that are TWO sizes bigger than you believe you need and not rough in the waist. Having some just one size bigger might also be smart.
    • If your t-shirts are at least one size bigger than you anticipated needing and loose in the neck, you will be grateful.
    • Shirts that look good worn as jackets can be wonderful. Don’t forget to have them one or two sizes “too big.” You may need them to cover the waist and hips so that you can hide whatever it takes, if even slacks two sizes too big don’t button.
    • For your nightgowns, to just above the knees is best, soft is wonderful, loose is required, big arm holes help. I gave up on my pretty new gowns and mostly used two, old, extra large t-shirts because the gowns seemed to be binding between the arm pit and the breasts.

    Other Things for the Hospital and Beyond
    You may have favorite lotions or other things that sooth you.

    My best friend is a “sippy cup” that my daughter found in the hospital’s children’s gift shop. It is one of those cups for toddlers that can go upside down and not spill. I was mad for ice and water, starting way before the medical folks were comfortable with combining water with the anesthesia. The sippy cup also seems to produce giggles.

    Light weight reading may prove useful. I mean light weight both literally and figuratively. You will not want to try to hold up anything heavy or manage something as awkward as a newspaper. You may, however, benefit from having something to try to read.

    Equipment to Take on Dismissal
    Dr. Lenke asks that patients buy a “spine kit” to have for OT. The wiper extension and the grabber are useful. The difficulty is that the wiper works wonderfully with the wipes available in the hospital. We have not yet found baby wipes that are as good.

    You will probably leave the hospital with a walker. Apparently, insurance generally covers this.

    You will use a toilet seat thing in the hospital. The height can be adjusted to work for you. The chair can be equipped to go over a regular toilet or to be used as a porta potty. The chair is also perfect for use in the shower. Apparently, this item is not covered by insurance. Apparently, its cost is around $50. Since we were going to an apartment with low toilets, we felt doing without was not an option.

    You will also want some of those wonderful shampoo caps.

    We also noticed that the nurses in the hospital used an alcohol foaming wash for their hands. This has proven useful for us, too. Particularly, when I don’t feel like bending to wash my hands at the lavatory.
    Cheryl

    Double major idiopathic scoliosis from 1988; progressed to 53 degree thoracic/65 degree lumbar.
    Corrected (with posterior surgery, fusion from T4 to the sacrum, & instrumentation) on August 4, 2008
    by Lawrence Lenke to within 10 degrees.

    Love this forum! Thanks, all!

    Comment


    • #3
      Originally posted by CherylPJ View Post
      You will be very unusual if you do not bloat.
      I don't know if it is an adult vice kid thing or if it is a surgeon protocol as to when to start eating again thing but I can say my daughter's surgeon was ADAMANT about not eating/drinking ANYTHING, even ice chips, until her bowels were awake. To my recollection, this was on day three. Despite the fact that my daughter was very thirsty, I could only wet her lips and mouth with a water-soaked small sponge. She could not have even ice chips until day three when bowel sounds were heard.

      The result was no bloating whatsoever. Nor did she lose any noticeable weight as predicted in so many online sources.

      She did not eat much in the hospital and was not required to have a BM before discharge. She only gradually started eating over the next week while at home and wasn't up to speed for about 2-3 weeks. I never pressed her to eat or drink. I left it entirely up to her.

      The surgeon considered bloating/nausea/vomiting as a setback and so sets his protocol to avoid it scrupulously. It worked in my daughter's case.
      Last edited by Pooka1; 08-22-2008, 07:21 PM.
      Sharon, mother of identical twin girls with scoliosis

      No island of sanity.

      Question: What do you call alternative medicine that works?
      Answer: Medicine


      "We are all African."

      Comment


      • #4
        bloating/swelling...

        Sharon-- I think we are talking about two different kinds of bloating here. There is bloating (abdominal, facial, etc.) that occurs from being in surgery for such long periods of time, and that is different from some kind of intestinal bloating that occurs if someone eats or drinks when their intestines/stomach are still "asleep." I wasn't allowed to eat or drink anything for 5 days because my bowels were still asleep, which is called an ileus. I was allowed an occasional ice chip (notice that is singular) but very few at all during that period of time.

        If you take a look at my picture right after my surgery, I think you can definitely tell I'm bloated. BTW-- yes, I'm a bit heavy, but weighed 150 going into surgery-- probably about 20+ lbs. more than I should, not hugely excessive. That bloating/swelling is even though I was placed on a Jackson table for my surgery (that drops away and allows your abdomen to "hang free"-- and yes, don't you love that terminology! ) and probably prevents excessive swelling. Think of the abuse that happens during 8 hours or more of intense surgery-- I don't think there is any way that a body could not be affected and have some swelling from such a procedure. Most people having extensive spinal fusion surgery will experience some bloating of their body from tissue damage, etc., etc. It has nothing to do with when you are allowed to eat which, BTW, my hospital and doctor were very strict about also.
        71 and plugging along... but having some problems
        2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
        5/4/07 posterior 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
        10/2018 x-rays - 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

        Comment


        • #5
          Well then it is likely another adult vice kid thing because my daughter had ZERO bloating at any point other than her face for a few hours post surgery while in the ICU. I don't recall her having any face bloating when she was in the room a few hours after surgery and she at no point had abdominal bloating to my knowledge. I was with her during her entire hospital stay except when my husband was there a few hours each afternoon while I went home and showered.

          She was in surgery about 4.5 hours (T4-L1).
          Last edited by Pooka1; 08-22-2008, 08:36 PM.
          Sharon, mother of identical twin girls with scoliosis

          No island of sanity.

          Question: What do you call alternative medicine that works?
          Answer: Medicine


          "We are all African."

          Comment


          • #6
            I wasn't given anything to eat for TEN DAYS because my intestinal track was asleep for that long. Each day, my stomach became more and more distended. My kids were joking about my pregnant belly ( . . . a relevant subject since I have two more grandbabies on the way!) Anyhow, they claimed that I looked one month farther along in my pregnancy with each passing day.

            Frankly, the distention is painful, albeit common with this surgery. Fortunately, it goes right away when the stomach wakes back up!!!

            Thank you, Cheryl, for an amazingly helpful list!
            Ginger Woolley

            Oct 2018, L3 - S1, Anterior & Posterior, Dr Sigurd Berven, UCSF, San Francisco
            ******
            May 2008, T4 - L3, Dr. Ohenaba Boachie, Hospital for Special Surgery, NYC
            ******
            Sept 1967, T4 - T 11, without instrumentation, Dr Thomas Brown, Stanford

            Comment


            • #7
              My daughter was in the O.R. for 10 hours and her face, hands, legs and feet were especially bloated/swollen. I didn't get to see her until she was in recovery for an hour and the staff told me her swelling had already started to go down. As I sat with her I could visibly see the swelling going done. Jamie's face was so swollen that when the staff pushed her bed past my mom she didn't even recognize her. She said the only way she knew it was Jamie as because I was walking behind the bed.

              Not sure if this was on your list or not, but make sure someone writes down every medication you are given, what it is for and the time it was given. Make sure while in the hospital, you ask for your oral pain meds as they are prescribed. Once the pain gets ahead of you it is very difficult to get it under control.


              Mary Lou
              Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

              Comment


              • #8
                pain meds

                Hi, Jamie's Mom, yes, thanks that is a very important addition to what I hope will help people in those first critical days. I didn't get it that the percoset was on demand and that that meant I had to ask for it. For about 12 hours, this went on and I paid big time for letting the pain get ahead of me.
                Cheryl

                Double major idiopathic scoliosis from 1988; progressed to 53 degree thoracic/65 degree lumbar.
                Corrected (with posterior surgery, fusion from T4 to the sacrum, & instrumentation) on August 4, 2008
                by Lawrence Lenke to within 10 degrees.

                Love this forum! Thanks, all!

                Comment


                • #9
                  Originally posted by Ginger W. View Post
                  I wasn't given anything to eat for TEN DAYS because my intestinal track was asleep for that long.
                  Did you drink anything or eat any ice chips?
                  Sharon, mother of identical twin girls with scoliosis

                  No island of sanity.

                  Question: What do you call alternative medicine that works?
                  Answer: Medicine


                  "We are all African."

                  Comment


                  • #10
                    Originally posted by Pooka1 View Post
                    I don't know if it is an adult vice kid thing or if it is a surgeon protocol as to when to start eating again thing but I can say my daughter's surgeon was ADAMANT about not eating/drinking ANYTHING, even ice chips, until her bowels were awake. To my recollection, this was on day three. Despite the fact that my daughter was very thirsty, I could only wet her lips and mouth with a water-soaked small sponge. She could not have even ice chips until day three when bowel sounds were heard.

                    The result was no bloating whatsoever. Nor did she lose any noticeable weight as predicted in so many online sources.

                    She did not eat much in the hospital and was not required to have a BM before discharge. She only gradually started eating over the next week while at home and wasn't up to speed for about 2-3 weeks. I never pressed her to eat or drink. I left it entirely up to her.

                    The surgeon considered bloating/nausea/vomiting as a setback and so sets his protocol to avoid it scrupulously. It worked in my daughter's case.

                    OMG not being able to drink water until the 3rd day after surgery was SOOO frustrating lol. My mouth was soooo dry, it was horrible!

                    And yeah, the doctors kept checking for 'movement' in my stomach before i could eat or drink ANYTHING. I was SOOO happy when there finally was movement!
                    17 years old - Female - Canada
                    Had fusion surgery June 26th, 2008
                    Feel free to ask me ANY questions about my experience!

                    Comment


                    • #11
                      Cheryl
                      thank you so much for this very comprehensive, personal experience of your stay - I have read so much on this site that has been of help but this post (so near to my surgery date) has helped calm me - I SO agree with your comment "The better we have internalized what to expect, the more likely we are to maximize the options and solve the issues." - crikey I hope so! Only time will tell I guess...11 days to go and counting... (deep inhale and breeeeeath!)
                      Thanks again
                      Louisse
                      Diagnosed aged 17 thoracic curve of 40°/48? given brace worn for short time but was then told that I had stopped growing and it wasn’t likely to get worse. Follow ups ‘got lost in the system’ and I chose to ignore until age approx 33, after two children. Now nearly 42yrs curve was progressing (last xrays 67 degrees) and increasing 'backache' so surgery (posterior T3 - L1) went ahead beginning of September 2008 in UK - thoracic curve now approx 20° and I look a lot straighter!

                      Comment


                      • #12
                        Very comprehensive list! Thank you very much for the effort! I will hopefully use this list in the coming months.

                        Comment


                        • #13
                          Cheryl-- yes, that is a great (and detailed) list that should prove very helpful for others. I know vndy gave an account of her stay, probably in late Dec. or early Jan. since her surgery was in Dec. that is also pretty informative.

                          Everyone's hospital stays seem to be a bit different, but the same basic stuff. Thought I'd add a few thoughts of how mine differed.

                          I was in the hospital 11 days (and yes, I needed to be) and after the first 3 days (I think) I was ok by myself for periods of time. We live about 2+ hours away from the hospital (depending on traffic) and hubby would sometimes go home to sleep, shower, and work for awhile. I was fine on my own. The staff was very attentive and helpful. My husband tried to be with me for awhile each day, but neither of us saw any reason for him to stay all the time.

                          I never had a walker. The only time I laid hands on one (and I think there's a pic of me with one) was one of the first times I went to PT, and they just had me hold onto it briefly, not walk with it. During my first times of walking in the halls they had me hold onto someone's arm to keep me steady. I was issued a cane, but that was only to help me when going up and down stairs. I was ok walking on my own (albeit very slowly and carefully!) BTW... the only time I ever use the cane anymore is for crowd control when I'm going someplace where there are LOTS of people-- it's a handy visual aid to let other people know not to jostle you or to give you some space-- or to be patient if you are being slow!

                          OT equipment-- I still use the grabber they gave me for pulling up my undies... can do pants fine, since they are longer. Also use the sock-aid--- I just can't quite reach to get a sock over my toes. The long-handled shoe horn I use to push my socks off with when I take them off. I just slip it inside the back of my sock and it works great. My toilet seat was one that just sits on top of a regular seat and clamps to it. It was not adjustable. It had arms, which I found invaluable in helping me to push up when getting up. I grew very fond of the ease it provided... so hated to put it away, but did at about 5 months. Those things were all issued to me in the hospital, so were covered under my insurance. We purchased a shower chair which was just what I needed at home-- along with a hand-held shower wand. I would have had a very difficult time without the shower chair... even with it, I felt pretty exhausted after showering for quite awhile. I put it up too, when I did the toilet seat.

                          One other suggestion (which didn't occur to me for several months, after I saw that others on the forum had their info...) is to get copies of the paperwork they do on you in the hospital. You can get the anesthesiologist's report, the info from your chart that the nurses and doctor scribble on, etc. And of course, your op report too. The only thing I have is my op report, which I asked for at my last visit-- at about 8 months post-op. I know I could get that other info now if I requested it, but after the immediate time, you have to pay the cost for someone to search for it, their time copying what you request, and then the cost for actually making the copies. It seems like too much to bother with, after the fact, but would be fairly simple at the time, if your spouse or advocate could request it for you. Just a thought, for those of you who might be curious later on about your meds and procedures, etc.

                          Best wishes to those of you who are still on the pre-op side of this surgery. It is definitely hard work, but well worth it! And educating yourselves and becoming familiar with what your needs may be is a sure fire way to be prepared and not as frightened. Hugs, Susie
                          71 and plugging along... but having some problems
                          2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                          5/4/07 posterior 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
                          10/2018 x-rays - 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

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                          • #14
                            See! This very post is the kind of thing that I NEED to hear!!! Things to be prepared for, made up by a person who went through it themselves.

                            Reading is a passion to me, I read every single night, until my pain meds knock me out and I was hoping to get to read after surgery to maybe take some of the focus off the pain. I also have my bestest friend, my iPod, that will be making the trip with me...music relaxes me, even if its something like Metallica or Slayer :] And I read somewhere that music was a good thing to bring, especially if its something discreet like an iPod as to not disturb the next room and such.

                            I asked my husband to update my blog and maling list, but he isn't exactly computer savvy and I don't know if he will do this task for me. I will be bringing my laptop and my mother will be staying with me 24/7 at the hospital, so hopefully she will do this, and maybe if I am coherent long enough, maybe I can do this.

                            Anyone else that can add to this would totally rock so I can add it to my collection of info :]
                            .:Staci:.
                            27 years old, married mom of two daughters.
                            Diagnosed at 12 y/o. Double curves have progressed to 63 and 65 degrees.
                            No treatment as of yet.
                            Surgery scheduled January 15, 2009.
                            http://www.lifeiscrooked.blogspot.com/

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                            • #15
                              Cheryl,

                              This is a wonderful list. Thank you so much. I made a few notes for myself to look for--the shampoo camps, flosser, knee length robe & slippers.

                              I was surprised to read about the insulin shots. Does everyone get these?
                              __________________________________________
                              Debbe - 50 yrs old

                              Milwalkee Brace 1976 - 79
                              Told by Dr. my curve would never progress

                              Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
                              Pre-Surgury Thorasic: 66 degrees
                              Pre-Surgery Lumbar: 66 degrees

                              Post-Surgery Thorasic: 34 degrees
                              Post-Surgery Lumbar: 22 degrees

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