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Thread: What you wished you knew about surgery and recovery

  1. #1
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    What you wished you knew about surgery and recovery

    What do you think of posting some of the things you wish you knew going in? It may be helpful to those waiting for surgery.
    I wish I knew that I'd be helping my son with the toilet. I also wish I knew that from spending all those hours face down that he'd be swollen in the face.
    Bethany

  2. #2
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    Bethany,

    Great idea for this thread.

    Helping Jamie to the toilet is always easier when you and the child are the same sex. I'm surprised the surgeon didn't tell you about the swelling. I literally could sit and watch the swelling go down with Jamie. However, when her bed was pushed past my husband and mom, neither one of them recognized them. They only knew it was her because they saw me.

    I wish I had known she would have an NG tube sticking out of her nose. I was also surprised to find a large IV bag on her upper thigh/groin area. It was being used to keep pressure on the site where they had put some kind of line. But the most shocking thing for me was seeing a central line (?) sticking out of Jamie's neck.

    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.

  3. #3
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    Hi Bethany,

    I wish had know the meds cause hot/cold flashes as well as mood swings. I thought I was starting menopause!!! LOL!

    I also wish I had known that a stool softener WAS NOT ENOUGH! I had to take a laxative and softener at every meal while on pain meds. ( I found this out from my pharmacist, when he asked how I was doing, about 6 weeks out from surgery!)

    Mary Lou, My Dad walked right past my bed when I was in the recovery area. I guess he didn't recognize me either.

  4. #4
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    I wish I knew that they pin the head down, well maybe I didn't need to know that, but it explained the bloody clumps on the head. I thought my daughter had hit her head the day before and didn't say anythig.
    Emily

  5. #5
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    Quote Originally Posted by babachi View Post
    What do you think of posting some of the things you wish you knew going in? It may be helpful to those waiting for surgery.
    I wish I knew that I'd be helping my son with the toilet. I also wish I knew that from spending all those hours face down that he'd be swollen in the face.
    Bethany
    I wondered about this as well with my "gadgets" post.

    Is this an area where they should have a gadget to help them reach? Or are we shown/given this stuff to take home with us from the hospital?

    Marian

  6. #6
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    Not everyone needs help with toileting issues. My son never needed help with that. But he needed help putting on shirts and a chair in the shower and probably some other things I'm forgetting now. I've read about gadgets for reaching while on the toilet but we weren't offered one. The only gadget I bought was a baby monitor so I would be able to hear Alexander while I was sleeping or in another room with noise.

    I wish I'd known/realized that postural issues could possibly still be a problem. I guess I just read a lot about so many people having such perfect posture after their fusion that I thought my son would have it too. I think/hope he just needs more self-awareness about it. We have our next ortho appt./x-ray in Feb. and I get so nervous before each one.
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  7. #7
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    Marian,

    Not all kids need help with using the toilet, they just need help getting there and back, especially in the first few days after surgery. That's really all I did for Jamie. However, I remember reading a thread in the adult section about gadgets. I think someone mentioned a gadget that looked like kitchen tongs that they have available. Maybe try doing a search to find them?

    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.

  8. #8
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    Just a little bit about gadgets... some of those items you will receive in the hospital with your insurance footing the bill. Of course, everyone's hospital and surgeon are different, but some of the things I got (that I remember!) were sock aids--a hard one and a soft one (helps you put your socks on), a reacher, a raised toilet seat, and a cane. Regarding "tongs" for wiping-- it was really hard for me with my long fusion, but they didn't give me any. I either did the best I could, or they helped some (aughhhhh!). The nurses said if I really needed some way to help after I was a little better, then I could get some tongs from a health aid place, but they were quick to add that a short pair of kitchen tongs would be the same and cost a lot less. I managed ok on my own without anything.
    66 and still heartbroken...
    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
    2014 DXd w/CMT (type 2)

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

  9. #9
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    Great thread!

    Suzie, is the reason it's difficult to wipe yourself because you can't "bend" sideways, or forwards? I can't imagine not being able to reach, though I expect my body will be longer, once surgery is done.

    I understand this is a tricky subject, but I have never really understood why it would be difficult to do this "job".
    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

  10. #10
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    Jennifer-- I think it's really both, and then some. One of those things we don't really analyze or think about until it becomes a real task/challenge for us. I still have to s-t-r-e-t-c-h as much as possible to reach, but manage. I am fused from just below my neck to just above my "gluteal cleft" When a "normal" person "reaches", their back rounds a little plus twists and bends to the side a little. When you have 20" rods you can't do any of that. Sometimes your arms just aren't quite long enough-- but you learn to hold your TP at the end of your fingers, etc. Plus some people do buy those little tongs to use. Does that help to picture it? I had no idea, going in to this surgery, that wiping would be a problem. In the big picture, it's not a big deal. Just something to work through and we all do. Don't worry about it.
    66 and still heartbroken...
    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
    2014 DXd w/CMT (type 2)

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

  11. #11
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    Thanks Susie, that does explain it, especially the rounding of the back during the procedure. I will take special notice next time.

    I'm glad it hasn't been too much of a problem for you, with such a long fusion.
    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

  12. #12
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    git r done

    I was worried about this subject matter, and didn't have any problems. Of course I was determined to "get the job done" rather than have some one else do it for me.

    I had the "tool" ordered at the hospital, but it never made it to my house. Just like Suzie Bee said, its the full extension of the arm and proper position of the body that's essential for "gettin er done"

    Jennifer, I "get r done", with being fused up to T2, so with your fusion at T5, you will have 3 more levels of mobility "up top"
    it shouldn't be any problem at all for you.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,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

  13. #13
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    That's great to know! Thanks Ed.
    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

  14. #14
    Join Date
    Feb 2008
    Location
    Southern California
    Posts
    12
    I wish I had known walking would hurt so much at first! I don't remember much of my hospital time, since my brain pushes out bad stuff, but it would've been nice to have a heads up before I tried sitting up quickly, since I remember that did NOT go well. xD Luckily I'm a speedy healer, or so I'm told, and was walking without much pain by day two or three. But to any future surgical patients, don't expect full motion capability at first!

    I also wish somebody would have told me I had a chance to get anemia. I did get it, and the couple of times I almost fainted from it, I thought I was having a heart attack! So naturally my fear made it worse! I got iron pills and I'm all better now, but it would've been helpful to know. ^^;

    By the way, this thread is a great idea! Kudos to the thread starter! =D

    -Rachel~13~Surgery happened
    -It was July 10th
    -Curves were 57 degrees in upper back and 67 in lower pre-op
    -Dunno all of the terms yet so idk where I fused to or w/e...
    -Would love to chat with anybody at all, especially people with comments/concerns/advice!

  15. #15
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    Quote Originally Posted by Susie*Bee View Post
    Just a little bit about gadgets... some of those items you will receive in the hospital with your insurance footing the bill. Of course, everyone's hospital and surgeon are different, but some of the things I got (that I remember!) were sock aids--a hard one and a soft one (helps you put your socks on), a reacher, a raised toilet seat, and a cane. Regarding "tongs" for wiping-- it was really hard for me with my long fusion, but they didn't give me any. I either did the best I could, or they helped some (aughhhhh!). The nurses said if I really needed some way to help after I was a little better, then I could get some tongs from a health aid place, but they were quick to add that a short pair of kitchen tongs would be the same and cost a lot less. I managed ok on my own without anything.
    Thanks, Susie.

    I guess I was concerned about no bending, twisting, etc.

    Haven't had to worry to much about that since dd was toilet-trained as a toddler, but now I'm trying to imagine what she would do.

    I think I will also ask about things she will be given to take home prior to surgery so I know not to double up on "gadgets."

    Marian

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